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It’s Wednesday July 3, 2013 and today is our latest scheduled date for Hudsons surgery. We are a bit anxious to say the least since we have already been bumped twice and we are frequently hearing other parents at the House saying beds and nurses are not available. Nonetheless, we follow the instructions that are given from pre-admission. We bathe him 3 times with surgical soap and we arrived at the hospital at 9:30am not having food since midnight. Chris and I didn’t have time to get breakfast in the morning neither. Hudson is not allowed to have any fluids since surgery was scheduled for 11:40am.
The nurse confirms his identity and puts a bracelet on his wrist and we’re thankful his separate blood bank ankle bracelet stayed on for the entire week, otherwise he would have had to be poked again. 11:40 rolls around and now he’s asking for water because he’s so thirsty, but unfortunately he can’t have anything. After about an hour of waiting, we hear the people next to us being told that their surgery has to be postponed due to lack of beds and nurses! Needless to say those parents were not happy whatsoever and I don’t blame them. Now we start to get a bit edgy, grumpy, being hungry and annoyed because we have been waiting in a small room for what seems to be forever without any status updates. It’s around 12:00pm, about 2.5hours after we arrived, a nurse came to talk to us and said, “Dr. Rebeyka say’s it’s a go and yes, there is a bed available.” PHEWWW!!! But there still always the possibility of being bumped again even if Hudson was being prepped in the OR. It’s 12:30 and Dr. Rebeyka comes to finally talk to us on what he plans to do to Hudson’s heart. He seems very confident that everything will go smoothly and does not expect any problems since he’s going in very healthy. He says he will also try to repair his Tricuspid valve that currently has a mild-to-moderate leak and also reconstruct his aortic arch to widen it. This is good because Dr. Rebeykah had done the original repair during his Glenn operation. Chris mentions to me that Dr. Rebeykah makes it sound so easy like he’s fixing a car! And lastly of course, the main reason we are here, the Fontan procedure which is re-routing his blood flow. (Chris likes to know every detail so he can write more on this operation sometime). Dr. Rebeykah say’s that he should see Hudson in the OR around 1:00. Another hour passes and we are starting to want to scream at someone because we have been there since 9:30 waiting and the anxiousness, thinking of the possibility of being bumped again being so late in the day, is eating at us. Finally, 2:00 they get a call to take him up and gown him up. He’s wheeled in and Chris wants to go with him into OR. Chris has been putting together video of Hudson’s Journey since he was born and wants to be able to record him going into the OR. It was really hard for me at this time to let him go and see him be wheeled off into Operating Room. It’s like I know I should let go, but it’s so hard to give him up. One thing that was so reassuring in my heart was that when I asked him who was going to be beside him when he has his surgery. His response was, “Jesus!” I am so proud of my boy to know he’s not going alone and that there is also an army of people praying for him and for our entire family.
To be brave and courageous,
For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you Hope and Future
– Jeremiah 29:11
So once he’s sedated, Chris leaves him and meets up with me in the hallway. For some silly reason, Chris and I were fighting about something but I can’t remember what about. It must have been so stupid and silly. How can we be fighting at this particular time when both of us need to be comforted? We just handed our baby off to surgeons that are going to cut open his chest, break his ribs and fiddle with his heart! Yeah, a bit nerve racking! But I guess we just needed our time alone to gather our thoughts and realize how immature we are for being mean to one another at this time.
Anyhow, we managed to get it together and approximately 5hrs later we are back at Hospital waiting again. As we waited for approx 1hr, we see the surgeon Dr. Rebeyka come out and speak to us. He is a very confident surgeon and he informed us on what he had done, that he was very pleased with the work and everything looked really good and he should be extubated, brought to PICU and we should see him soon.
Well after 7hrs being in the OR, he finally makes his appearance at 8:00pm and looks good. They take him into PICU and we wait again for about 20min or so to go in to see him. Finally… We are able to see him and we are so happy on how he looks and how responsive he has been! Apparently, the first words that came out of his mouth when he woke up were “Don’t touch me, go away!” HA HA!! That sure sounds like something he would say.
I stayed with him all night and didn’t get any sleep at all, but when you’re running on adrenaline it’s hard to rest. I just wanted to make sure he was OK. He kept waking up every 5 to 10 minutes asking for water and apple juice and we were unable to give him anything until a minimum of 4hrs after the operation. But that didn’t stop him from asking, he was determined & persistent and once I was able to give him a bit of water on a sponge tip, he took it like a desperate person for liquids. It was the saddest/cutest/funniest thing I’ve ever seen. I kept sneaking some more for him through a sponge tip and eventually I told them he keeps asking for apple juice. They finally caved and allowed him 10ml at a time. Again, that was almost too cruel to do, he would just suck that juice from the sponge in desperation for more and would of course get really mad since we would say not right now, lets try later. That made him mad and at one point he said “Momma, I said I wanted Apple Juice!!” HA! HA!! It was only cute because he was still so sedated, yet he was still full of attitude.
I think he had a stretch of 30min sleep and that’s pretty much what I slept. The day after, I was feeling pretty zombie-like but so glad and thankful he was doing so good. I don’t think I was able to get any sleep until maybe his 2nd day.
Hudson was unable to have his surgery on Thursday or Friday and we never received a call before the weekend, so we assumed that it wasn’t going to happen before the Wednesday they had tentatively scheduled us for after the second cancellation. So we made the most of the long weekend.
On Saturday, we were blessed once again with having a dinner prepared for us. All dinners are special but this was done by the FC Edmonton Soccer Team (or Futbol Club!). We had the coach and some players make the dinner and it was funny to see some of them stumble around a kitchen HA!!HA!! But not to worry, there was female help, phewwww!!!
I have to say though they were all very nice guys. Some even took the kids out to play soccer in the field in front of the house. Hayden had a total blast, he played hard and with the professionals. It was awesome and Hudson did try kicking the ball to them, but that’s all he would do. Hayley didn’t have much to do with playing with them and instead wanted to play keep-away from Daddy. She had fun off to the side.
Once the dinner was all ready and we were all fed. They handed the kids jerseys and the guys were very nice to spend time with the kids signing their shirts. Kids had a blast going up to each player asking them to sign their shirts. It was cute and I was so proud of them for working up the courage to do it. We were also given tickets for their game against Minnesota the following day (Sunday)!
On Sunday, we visited the Southgate Alliance Church that we had visited 3 years ago when Hudson had his 1st and 2nd surgery. We really felt welcomed by everyone and God puts amazing people in our path. We happened to be sitting right behind this super nice lady name Natasha and she quickly introduced herself to us and we told her how we weren’t from here, but we had come to this church 3yrs ago and gave her the rundown on why we were in Edmonton. Anyhow, after the service was done, the Senior pastor got up in front of congregation and welcomed us and prayed for Hudson and our family all because someone was friendly to us, welcoming and God wanted us to know we are not alone and he takes care of us wherever we go. It was very touching.
Once we left the service we came back to house to change and get ready to take the kids to see their very first live soccer game. I have to say that we had a lot of fun and the kids really seemed to enjoy it. Hayley keep cheering and looking for #5, the Captain. He had talked to her when they were at the house and he told her that he would keep an eye out for her HA! HA! She remembered that line ;-). Hudson just loved it and was very involved with the cheering. I think it thrilled him to be there. I can’t wait to get back home and hopefully I can get Hayden into soccer camp this year. They all want to be soccer players HA! HA!!
Monday we celebrated Canada day by going to the legislative building and there was more than enough activity for the kids, they were pooped at the end of the day.
Tuesday the kids had a field trip day with the school. They went to a water park. Boy did Hudson ever have fun, he has been scaed of water parks sooo much but NOT anymore, he loved it, I haven’t seem him have that kind of fun playing with water, super awesome to see him sooo happy.
One day before surgery has been scheduled for next. A little nervous about being out, but worth it seeing him have soo much fun.
Today was the supposed to be the big day. Hudson was scheduled to have his surgery at 12:30pm MDT and we were super ready. I had given him the required 2 anti-bacterial baths the night before with the surgical soap they provided and a 3rd bath this morning before leaving. I fed breakfast to the other two kids, arranged their activities at the House , we prayed as a family, and then we packed Hudson up in the van and off we went to hospital. Thankfully, the House is just 5 minutes from the Stollery Children’s Hospital. We were on our way there and just about to pull into the parking garage and we get a phone call. Our nurse, Cindy, said not to pull into parking and they will likely need to postpone Hudson’s surgery because they don’t have any beds for Hudson post-op. They are full and don’t expect any beds to free up today. 🙁 They mentioned they may have to reschedule to next week or possibly send us home! I was thinking NO WAY! However, they were going to call us back in 30 minutes to let us know. Forty minutes passed and the call had unfortunate news for us. They were unable to get us in today. I have to say that i felt disappointed and a bit frustrated because I did feel ready and Hudson was ready to go to the hospital and was even telling us he was going to have his surgery and “unzip him and fix his heart”. He asked, “How come no more surgery, mommy? How come? Awwwwww!”. I had to explain to him the reason. There are only 23 beds and they already have 23 patients.
Later in the day, the dissapointment passed and I was OK with him not having surgery today. It was a beautiful, sunny day and I took him to the playground and watched him enjoy himself thoroughly playing in the sand. The House also had movie day in the afternoon as part of the school program they have here and he watched a movie with the others. He had ice cream and played with his cars and danced around naked HA! HA! what a goofball of a kid I have, seriously, he’s so funny.
We did finally receive another phone call saying they will try to get us in for tomorrow (Friday) at 2:40 PM MDT, so I really pray that this will happen because I dont’ know how much postponing I can do. It is draining because I work myself up for the day so much that having to do it multiple times would just deflate me.
A wonderful thing about being here is all the families we get to meet, listen to their stories and meet their little miracles. I am thankful Hudson is able to enjoy the House as much as his brother and sister have raved about it to him.
Tonight we had another group of people come and make us a dinner. A taco buffet with a ton of desserts and apparently every Thursdays we have a group of Mennonite ladies bake all sorts of baked goods all morning in the House. I will be rolling out of this place after all the food and goodies that are here HA! HA!! But really, I am just overwhelmed with everyones generosity and willingness to help families at times where making a meal is the last thing you want to be doing and thinking about when all your mind is preoccupied with your childs well being.
Anyhow, I pray that tomorrow happens. Hayden and Hayley will get to go on a trip to the zoo nearby with the school program here at the House. I feel so much better leaving my other kids behind knowing they will be taken care of by their grandparents and at same time get to do fun stuff with other kids. It is one less thing I need to worry about.
We arrived at hospital at 7:00am to start his series of appointments. We didn’t finish until 7hrs later but Hudson was the most amazing trooper. I have never seen him sooo well behaved and never have I ever seen him cooperate with the doctors and nurses as much as he did today. He did ask after every procedure if we were done yet and “can we go now?”. He did indicate a few times he was done and ready to come back to the house. They didn’t even have to sedate him at all to get the ECG, Echo and 3D Echo done. We are super impressed with him! The only time he put up a fight was the very last procedure which was blood work and yes, he did cry for that one and we did have to hold his arms but that was the very last thing and he was very tired at this point, phewww!! Who lies being poked by a needle anyways!
Once we got back to the House, the other two kids were in school. They have a school program for kids at the House and now they have entered the summer programs. And the kids are loving it here soo much.
Apparently at lunch time, a few firefighters came and made cookies with all the kids in the house and made lunch for the families. Kids were soo excited to be able to bake cookies and other deserts with them. I was soo thankful that they are having a good time and able to particiate in so many things. Hayley was particularly excited to show the “bear claw” chocolate chip cookies she made.
The Ronald McDonald House also has a room called the Quilt Room. Each of the kids were brought down to the room to pick out quilts. Apparently they give out about 1000 a year!
We return to the hospital tomorrow for the surgery. We have been scheduled for 12:30 (second case).
We know how much everyone is praying for our little monkey and can’t even tell you how thank ful we truly are to have you as friends and family.
Chris’s mom is with us and both my parents arrived today to help out with the other two kids. We can’t do it without them, we are sooo blessed it’s amazing.
This is all the energy I have for today’s update, I’m falling asleep!
We arrived at the Ronald McDonald house late Monday, around 10:30 pm which was amazing timing, considering we were travelling with 3 little kids. Chris was cranking up the accelerator and only allowed us to have washroom breaks and one longer break for kids to play at a playground for a bit and even that wasn’t long. He’s such a guy, just needs to get there, but thankfully the kids were amazing.
Just before we arrived at the house, we drove past the hospital and I was overwhelmed with emotions and a bit of anxiety kicked in. But they quickly passed.
When we got to our room, there was a goody-bag on the bed for the entire family. There was a toy for each kid, coloring books and markers, toiletries and a coffee mug. Also, we happened to get one of the bigger rooms here, which is really nice. I love this house and everything that it stands for.
The kids slept in until about 9:00ish (8:00 their normal timezone) which is late for them, but we’re still pretty tired from the long drive the day before. Nonetheless, that did not stop them from having a fun-filled day exploring everything in the house from the video arcade room to the many play areas.
This amazing house has 3 huge kitchens with double appliances and one room fully stocked up with 4 freezers and 4 fridges that have all sorts of foods that people come and cook for the families. There is also a wall of canned and dry foods so I didn’t even have to go to the store and buy anything for breakfast for the kids. We were also blessed to have a group of wonderful ladies come and make an amazing dinner with strawberry shortcake for desert as well as some baked goods for the morning. They have been here all day! Chris thanked them many times throughout the day and I raved to them about the amazing salad they made. I can’t even really express it into words how grateful we are to be here and how blessed we feel to meet wonderful people that take time out of their day to come and make all these families a meal to really bless our day. It takes a lot of the worry of having to worry about feeding the family. Like I said before it was a long drive and lots of prep work to come here and we do miss our home even though the kids have already asked when we are going home, but we are at peace about being here and we feel well taken care of. I think the kids were really asking how long they get to stay here because they had asked if we could stay here for “10 days!” I’m sure they feel like that would be eternity for them to have lots of fun.
The kids also played Bingo after dinner with other families and won some prizes. Chris had already taken Hudson to get ready for bed early because he was overtired having too much fun. Hayden and Hayley tried really hard to win a “Cars” character that Hudson didn’t have yet but someone else won it and they were a bit disappointed briefly but were excited about the other prizes they picked out. It was another long day of fun and they were tired.
I am tired too, off I go to bed since tomorrow we need to be in hospital by 7:00a.m for pre-op appointment and are expected to be there between 4-6hrs but we are able to come back to the House and we await Thursday, the Big Day.
p.s. I also was happy to see a family we had met last time we were here, nice to see them again but sad to hear that they have been here since October of last year WOW! Their little guy is 3.5yrs old and he’s sooo sweet. He has a Hypoplastic Right Heart, so he has an underdeveloped right ventricle among other issues; Hudson has a Hypoplastic Left Heart. Praying for this little guy, always. His name is Joel.
It has been about 2 busy years since I was able to sit down and write about anything, but at same time when people say, “No news is good news” that’s exactly how it has been. Lots of growth has happened with the 3 kids in those past 2 years and it amazes me how fast time goes by and how precious time is.
It is the summer of 2013, Hayden has graduated from grade 1 and it has been a great year for him learning. He is now able to read with very little help and is doing great at math, and he is writing short stories with his own illustrations. It baffles me how fast he absorbs new concepts and how he learns so quickly and easily just like his father, a smart one he is for sure. My Hayley has officially graduated preschool, WHAT? Really, my little baby girl, my princess will now be entering a world of full-time schooling going into Kindergarten. Wasn’t Hayden just in Kindergarten? Now Hayley!? I watch her sleeping sometimes and all I can see is her pretty little baby face when I would rock her to sleep as a baby. How I will surely miss her at home during the day and Hudson will too, no doubt. Hayley and Hudson love to play “mommy and baby” all the time when they are at home. Hudson of course is the baby and Hayley is the mommy and they can play for hours. Sometimes he will call for “Mommy” and I respond and he gets annoyed with me and say’s, “Not youuuuuu, the smaaaaall mommy!”. Lately, Hudson has played the part of a little doggy. HA! HA!!
Hudson’s vocabulary and how he speaks makes me feel as if I am speaking to a teenager sometimes. He just turned 3 years old and is such a cheeky little bean and “full of beans” he is! Having half a heart has never stopped him from achieving his set goals and he always makes us smile with his charming character. He loves to run and jump from things and hang off the kitchen table and swing from it. Since he weighs nothing, it must be easy swinging his entire body from a chin bar and he makes it look so easy and fun. It has been a blessing watching him develop while his two older siblings push his limits.
How fun it is to watch them all grow, find themselves and watch their personalities awaken. Mind you, that can also be pretty scary at times. All 3 of them are super energetic, super stubborn, and strong willed. My goodness, motherhood is my biggest challenge when those 3 are combined.
As I sit and write in the car while Chris drives and all 3 kids are sleeping, this is one of the only times I can sit and just write my thoughts because usually I am always being interrupted by one of them saying “Mommy, Mommy, Mommy!”. But like I’ve said many times, I love my job, it’s the best.
It has been close to 3 years since we were first in Edmonton and at that time I was 37.5 weeks pregnant with Hudson and the other two kids were soooo small! What a nice drive it is this time, I am enjoying the majestic view of the mountains surrounding us on the road, it really is just breathtaking. I think I could live at the top of a mountain and hike everywhere. I would be super happy. I imagine watching the kids roll down the hills, that would be awesome.
So the purpose for this trip once again, concerns Hudson. Three years ago, I gave birth to this little miracle of a boy and is he ever a miracle. This time we aren’t being air-ambulanced or anything like that, everything has been planned and scheduled. We have prayed for guidance and wisdom in this regard for Hudson to have his 3rd and last of a series of planned 3 open-heart surgeries. To remind everyone, he was born in Edmonton because we only had 2 choices in Canada where he could get his first of 3 required surgeries. The first was in Edmonton at the Stollery Children’s Hospital and the second was at Toronto Sick Kids. We decided on Edmonton to have his first surgery called the Norwood (with Sano). His second surgery was a result of an emergency in Vancouver at BC Children’s. He had a cadiac arrest in front of Chris in the NICU at 3 months old after his heart rate went up to 300bpm and they couldn’t bring it back down. There was a risk of a heart transplant because his tricuspid valve in the right side of his heart was “leaking” severely. The surgeons in Edmonton believed they could repair his valve (by “pinching” it and making it a bicuspid valve) and performing his 2nd (the bilateral-bidirectional Glenn) of the 3 surgeries a little earlier. They prefer at least 6 months but he was only 4 months. Even after the emergency surgery and 2 more cardiac arrests, I can say we have witnessed a miracle! Hudson was previously scheduled for his 3rd (the Fontan) of the 3 surgeries, March 22/13 during Spring Break but he came down with a cold and a runny nose. If anyone remembers, this was the day that Edmonton had the major snow storm whiteout and the 100 car pileup on the highway! We feel strongly God’s hand was in this telling us this wasn’t the right time. Here we are 2 months later and it doesn’t sound like much of a difference but it was. Hudson started eating better orally instead of mainly being tube fed. He started eating as much as his brother and sister would eat. I remember wishing and praying during his first year, during times where he would throw up everything after spending up to more than an hour at times trying to get him to eat, during times when most of his food was through the tube, that one day I would be able to serve three equal plates and everyone would eat what’s on their plate. Today, I can honestly say that my prayers were answered! Hudson has improved dramatically with his feeding in such a positive way and in the last two months he has been working on potty training and he is doing very well with it.
We feel sometimes anxious and worried about having to see him strapped to machines, equipment and pumps of medications again and be on constant medication. We do, however feel confident he will do well and we know that he is in the best hands with the best knowledgeable doctors that know his condition well. And we are most confident that guiding these great, talented doctors is the hands of Our Great Creator, Our God!
He will be going in very healthy. We would have liked to have him weight more, because he’s such a skinny bean. He is soo busy that for him to gain any weight he would have to sit still and eat all day which does not happen!
So even though getting ready for this trip was busy and sometimes emotional, I have to say everything has gone pretty good. Chris and I managed to get a lot done before leaving and prepared ourselves well with what to bring and this time, not to bring as much. It’s hard to leave home under these circumstances. We actually left the house at the time we said we would and we didn’t’ even argue at all while leaving. Usually, whenever we plan a trip of some sort, we argue about something meaningless before leaving, but not this time. We seem to have it all together which was a nice change. I guess staying up until almost 2a.m did pay off. HA!! Honestly, it’s a blessing.
Now we can fully concentrate on what’s to come and being together as a family without having to worry about work and house-stuff and all of the business that being at home brings. Even though we are driving to get here and having to relocate for a while, I think this is the best thing for Hudson and our family.
Kids are doing soo good on this long road trip…..sooo very proud of them.
Wow, I cannot believe it has been a year since I sat down to write about our life with Hudson, Hayden and Hayley. I feel so bad for not doing this sooner, because now I feel like I almost forgot some very important things that should have been written down. Well I guess it’s true what people say, “No news is good news”. As I look to the last time that I wrote anything in our blog was back in February 2011 and was getting excited about planning Hudsons first birthday. Oh wow how much has happened since that time – where do I beging really. For starters I must say that we have been blessed this year tremendously with good health for Hudson mainly, we have had appointmets at hospital for check ups and such, but we haven’t been admitted once, so that in itself is a great, amazing blessing to be home all this time with our little man and enjoying how much our 3 kids have grown in the past few months. So if I had to come up with an excuse as to why I haven’t been able to keep up with more recent post, I have to say that life has been busy because we have been out and about enjoying it as much as we can. Sadly enough the times we have been able to keep up with our blog is when we have been in hospital sitting by Hudsons hospital bed, but since we are no longer hospital bound, we can hardly sit down. 😉 Ok well we can, but it’s only to chill-out after a long day running around taking kids to school or activities and so on.
I think I will go back to talking about planning Hudsons 1st birthday or what I can remember of that time at least. I have to say that there was lots of planning involved for his 1st birthday. Both Chris and I decided we wanted to invite as many people as we knew to this amazing milestone in Hudson’s life – so that is what we did. I was busy for months planning on party activities and party favours and what the food will be, so everyday I would work on a little something. It was very exciting to plan this event for me. A friend of ours that also has a little boy with HLHS, sent us what she did for party favours for her sons birthday and I just had to copy part of it, because it was really cool idea! I started making little chocolate hearts with two colors, one side of heart was turquoise and other size was brown. I have to say for not ever doing this before, they turned out pretty good! I choose those two colors because that’s what colour the boys room is. I also happen to find some tin containers shaped like a heart which I put some hard candy in, a turquoise and brown ribbon and voila they look very cute. I definately had fun making them along with 100 mini cupcakes. So Chris and I decided that Hudson really didn’t need to get a million presents, so we decided to turn it into a fundraiser for BC Children’s Heart Center and our friends helped us raise around $500 which was very nice and we also had a chance to see so many people that we hadn’t seen in so long since that year had been kind of crazy rollercoaster ride. I think that things started to really look up for Hudsons health soon after he turned one, by this time he had his G-tube in place for almost 3months (he got it when he was only 9 months old). At first I can’t say I really liked it because it seemed like he threw up a lot more than before he had it. But now it’s a lot better having because it’s a good backup for us if he doesn’t take food by mouth when he’s feeling a little under the weather or we just want to keep his food and liquid intake as best we can. We definitely agree that proper nutrition for Hudson is crucial, or at least the right amount of calories per day is a must to keep him healthy and be able to fight colds and such a lot better, just like any other kid his age.
Well, I always do this, I say I am never going to forget something and now I am really struggling to remember things, why I do this to myself I don’t know URGHH!!
Ok, I was thinking of a few things that happened after Hudsons birthday in April of 2010 or possibly just before. One was that we were asked to attend the Children’s Heart Network Wine Gala and to share Hudsons video/story with everyone that was there, which included many of the doctors and nurses that have personally cared for Hudson. Honestly, it was so awesome to have had this amazing opportunity to share Hudsons life to those who have cared for him while in hospital. They rarely get to see the little ones or the families journey! The videos Chris has put together are amazing really, they truly capture Hudsons 1st year and the struggles that have occurred during that time. We had so many people come up to us afterwards, some we knew and some we had just met, and thanked us for sharing his amazing life story so far and that they appreciate knowing what a family goes through with a child with such a condition, being in hospital so much and having two other kids to attend to as well. Even when Hudson wasn’t yet born, I remember saying and thinking, God has amazing plans for this little person inside of me and he sure does, I can’t wait to see all the amazing things God will do with Hudson, his life and everyone that’s around him.
Fast forward to September of 2010, we were also asked if we would be able to speak to a group of Hospital ICU staff about what it’s like to care for a child with HLHS and honestly, I was soooo nervous about it, but at the same time I really wanted to do this, I really wanted to be able to share with people what it’s like to care for a child with this type of congenital heart defect, both the struggles and the joys. Even though we had struggles with Hudson, they are outweighed by the joy of having him around and with us, he is such a special little man, with an extraordinary personality and a sharp mind of his own and yes that is truly a blessing. After suffering 3 cardiac arrests in one week, going through two open heart surgeries and 3 caths before he was even 4 months old, it’s completely amazing and yet his mind is so beautifully brilliant if I could say that, his mind wasn’t affected by all that trauma it’s miraculous. So that is why telling his story is something that both Chris and I like doing and if it helps other families that are struggling with similar challenges with their child we want to help in anyway we can. So again a great opportunity we had for that and the staff really appreciated how true and honest we were about things.
Also around September of 2010 was when Hudson decided he was going to surprise us and start walking! He had been furniture walking for quite sometime and by this time he was about 17.5 months old and finally… he did it! Still cautious but he finally did it and was walking all around the house, more so than the bum scooting he typically did. Honestly, I didn’t think he would walk that soon, I know it seems late compared to other kids but it really isn’t that late. Hayden walked at 15 months and Hayley was 14 months, so all the kids have been late walkers. I was very excited to once again see another great milestone!
A lot of other events happened in September of 2010. It was a busy month! My big boy Hayden started full day kindergarten and Hayley started preschool 2 days a week and all of a sudden I feel like my kids have just grown up so fast in a blink of an eye. I have one kid that is in full day school WOW!! Really??? Yeah I know. Somebody told me that once they start full day school, that’s it, the years just fly by and that makes me kind of sad. I am thoroughly enjoying my kids at this age.
Hayden just turned 5 yrs old December 23, 2010, Hayley is 3.5 years old and Hudson is 20 months. I can understand why some people keep having more kids, it’s nice having little people in the house but I am done with three that’s for sure. As much as I truly love having kids, three is quite enough for this old Mamma. I feel like I have aged more than what’s happened in the past 5 years, especially in the last 2! I can’t say my kids are super easy because I would be lying big time, they are challenging, they are smart, stubborn little stinkers, but life is just so much better with them in it.
I have to say that even though we had a bit of sickness strike the house this last Christmas of 2010, I enjoyed watching the munckins on Christmas Day and all 3 of them opening presents and their stockings and how excited they were about everything, it was pretty awesome. Thankfully Hudson and myself never got sick like Chris, Hayden and Hayley. Well, I am not allowed to get sick that’s a given and Hudson… well neither is he, so we still remain untouched by that ugly virus that kept Chris in bed with a fever for 1 week YIKES!! And the other two kids, just a short fever and a bit of coughing. Daddy is the weakling around here HA!!! He says he takes the fall for the family… RIIIIIIGHT, DADDY.
With a couple days before Chris had to go back to work, we decided to do a few things. We took the kids to ride the Christmas Train in Stanley Park. It was raining quite a bit so we only took the trainride and then stopped by Tim Horton’s for a hot chocolate after. Chris was still quite ill but managed to make it out. On New Year’s Eve, we took the kids to the annual Church Christmas skate. Hayden, Hayley and Hudson all enjoyed being pushed around on the ice. It’s been a while since Chris or I had been skating! After coming home, we all stayed up until after midnight with my parents and my sister to ring in the new year. We were surprised the kids made it and they were getting a little nutty. For me, it’s always nice to start the new year with the people you love.
On New Year’s Day, we took the kids snow tubing up a local ski mountain called Hemlock. We had a blast doing so and everyone tried including Hudson! He was nervous but he loved flying down in daddy’s lap and so did Hayden going down on his own. Hayley was a bit scared but I so loved it myself, it was a much needed fun time to have with the family. After a few hours, the kids were already planning to come back but on the way back home, they were knocked out.
So… that’s where life stands for the Torrens clan!
Hayden is now a 5 year old (“finally” he say’s) and in full day kindergarten at the Maple Ridge Christian School. He plays soccer on Saturday’s and also attends Sparks program on Wednesday evenings at our church which he thoroughly enjoys and is devastated if he ever has to miss it. Hopefully, if we can fit it in somehow we will start swimming lessons again. He’s such a smart little boy, he’s the youngest in his class, but certainly a bright kid. He really loves puzzles and Lego and still has the love for trains and making tracks. We are now entering the stage of ATTITUDE(!!!) which is very frustrating to say the least, but at the same time he can be the sweetest kid. He can be pretty shy sometimes and I think out of the 3 kids Hayden is probably going to be my quiet, shy type or… maybe he’ll surprise us.
Hayley turned 3 yrs old on Aug 23rd 2010 which was another fun birthday to plan and she was very excited to finally turn 3 years old, she feels bigger and older, she wants to grow up sooo fast and I just want her to stay my little princess forever!!! She enjoys telling everyone she is 3. She started twice a week preschool at the same school as Hayden and very much enjoys it. She is such a social bug that has made a lot of new friends. She is also in a program named Cubbies at the church on Wednesday nights which she enjoys very much. It’s nice that I can take both to the same location for both school and their Wednesday night programs. Hopefully we can start gymnastics, dance class and possibly swimming. We have to eliminate at least one activity because it’s getting crazy busy!
Hudson, well he is full on walking and has become quite the little dancer. Dancing is in his blood, anytime he hears some sort of music, he starts to move. He is quite the character, a true class clown for sure, he enjoy making us all laugh by making his silly faces. He is so cute and I think he knows it and is very confident about it. He absolutely loves the movie Cars and anything to do with CARS!!! Such a little man he’s becoming. He amazes me everyday with his precious life and everything he has overcome and has achieved this far. He has now caught up to his age level with physical abilities and mentally, he’s always been there. He’s so smart and cheeky, I am so proud of him. He has improved a great deal with his feeding, he eats more solids everyday, and loves to try everything, even though he may not eat it, he will try it. His taste in food is pretty cool, he loves things like smoked salmon, tomatoes with lemon and salt, bacon flavoured crackers, cream corn and peas. Those are some of his favourties. There have been times where we thought OK, we can probably pull out the G-tube, but he regresses and somedays he doesn’t want his bottles at all, so kind of a struggle, but we are making progress with eating for sure.
I am so grateful for all my three amazing kids, they are the center of our lives and it’s what makes me want to get up every morning, well I am forced to get up because they don’t sleep in HA! HA!! But in all reality, they are AWESOME!!! And a true BLESSING!!! I am forever grateful to God for giving me the honour of being their Mommy.
Chris and I, well we still struggle trying to get out just the two of us and having some quality time., so something we will work on this year I hope. Chris is still the VP of Engeneering for his company and I am still at home with the kids, hoping to get back into shape this year and same with Chris.
All in all, last year was great in regards to health and at this point we have no plans on being admitted to hospital with Hudson at all, well maybe a visit for a cath sometime in the Spring.
Let us know you stopped by!
BTW: If you haven’t seen Hudson dancing, see Chris’s Facebook video of him!
Well, it’s been too long since I was able to sit down and write about anything, as strange as this might be, the only time I have to sit is when I am at the hospital with Hudson for something. I guess it’s because I only have Hudson to deal with and not two other kids plus a house to take care of and when Hudson sleeps I have a bit of time to just sit, which is nice, but I still rather be at home and even though it’s busy at home I would take that anytime.
Well it’s certainly has been an eventufull past 9months. Hudson is 9months today I can hardly believe how big he is getting and that we are getting closer to being one years old, yet I still think of him as my little newborn, even though I realize how big he’s getting when he falls asleep on my chest and his legs are dangling down to my waist intead of the fetal position babies like to sleep in, still love to cuddle up with my little guy, he sure loves to cuddle lots and it’s totally ok with me, out of the three kids, I think Hudson is the one that allows to be cuddled the most.
I am going to try and go back and talk about the day after his Dedication since it seems like that was the last post.
Well the day of his dedication he was actually admitted in hospital but we were able to take him to church on a few hours pass and come back to hospital. It was a good day, it was so nice to see so many people come to church and show their support, it was awesome. I am thankful for amazing family and friends. Back in hospital, we were told he might be discharge the next day, but unfortunatly his little heart was still not behaving so we ended being in hospital for another week an half, so I think it turned out to be 3week stay or something like that, I have lost track because of all the times we are in and out of there.
Anyhow, we came home and so happy to be home with my other two kids and Chris, Hudson was doing great being home and started thriving with his development. Goes to show being hospital sets them back a bit, but he started to almost sit and his hand coordination was great, I was very impressed with his progress in such a short time being back home, I think that having the other two kids helps him so much, because he just feeds off them and you can tell he wants to just run after them.
We had a couple of times where he gave us a few scares. He was completly asleep and for some reason I decided to put on his sat monitor to check his heartrate and sat percent. Well as soon as I put it on I stared at it for a while to make sure it was working properly and I kept staring and the numbers for his heartrate kept jumping up and down ranging from 40 to 170, I immedicatly call Chris and asked him to listen through the stethescope and sure enough you can hear his irregular beats very clearly. Well we did what we usually do which is call the cardiology team at BC Childrens and explain to them what is happening. Of course they were concerned knowing his history or fast rhythm. They told us to keep an eye on for the next hour or so to see if it improves and of course if it doesn’t we would need to come in. Chris and I stared at the monitor for 2hrs and actually fell asleep on the couch with Hudson in the middle just watching the silly monitor. When we woke up, his heart was back to normal, so we made the executive decision to not take him and continue to monitor. Anyhow I think it might have been a week later or two that it happened again and it just happen to be the day of Chris company Christmas party. I was looking forward to going out and dressing up and get into the spirit of Christmas but we ended up not going because we both knew we would be too worried and not enjoy ourselves. Well that only lasted a couple of hrs and he was back to normal. Oh well, we felt better safe than sorry I guess, I’ll just wait until next year to get dressed up and go out HE!!!
So Christmas is just around the corner and I am getting excited and just happy that all my kids are with me. We spend Christmas eve at my parents which all 3 kids stayed up until midnight to open presents, can’t beleive that they stayed up so late and could do it. It was awesome, Christmas day we all woke up and came downstairs and just watched the kids open presents and even Hudson was excited to just look at the other kids and he got to open his first stocking, it was such a blessing to have them all together like that, I couldnt’ have asked for a better present really. New years we spent at home and the kids stayed up late once again and welcomed the new year with us and again all together to welcome the new year was an amazing blessing, I am so grateful for my family and Chris mom that have been there for both Chris and I through everything, we just couldn’t even imagine being able to do it alone, we wont’ ever be able to tell them how grateful we are, I dont’ think words can express it enough. It has been very challenging time for Chris and I but my parents, my sister and Chris mom have taken it as their challenge as well without us asking, they are just there for us, I am so blessed, soooo, sooo blessed.
The New year is here and Hudson continues to grow and everyday he seems to learn something new, I love watching him get to the milestones, I am so proud of him of what he has overcome, he’s my little trooper, fighter. He is now sitting on his own and has great hand coordination, passes things from one hand to another, holds his bottle with one hand and tries to feed himself with spoon and can grasp little fluff with just two fingers, he still a bit weak from upper body, but loves to do situps with daddy and that’s help tremendously. The two other kids get excited now that he’s able to sit on his own without tumbling over and can entertian himself. Hayden loves, just loves playing with his brother, it is so funny to see how Hayden and Hayley fight all the time, but Hayden is so amazing with Hudson and so is Hayley but Hayden understands a lot more. Hayley tries to be so motherly with him, yet Hayden just can’t wait for his brother to play roughly with him and run around the house and chase eachother. I love my boys and my little princess, I am so blessed, my Husband isn’t so bad either HE!! he’s great dad and we both can’t wait to get more rest and be able to do more fun stuff with the kids. We would love to take the kids hiking, we have missed hiking sooo very much, can’t wait to introduce that to the kids. Chris and I use to go hiking all the time and would do the “grouse grind: after work at least twice a week. This is when we had energy and actually got some sleep and werent so tired all the time, but we have been so inactive which might explain why we get sick a lot and are tired, but than again sleep would help us out with all of that. Soon, once Hudson gets into a better sleeping routine, we will too and be able to start exercising and exploring the outdoors.
Ok, so I rambled on about stuff. So now we are mid-january and Hudson is 9months and is curently in hospital getting a G-tube put into his tummy because he was still gaining weight, but the NG Tube through his nose was affecting his breathing and his throught and was making him throw up a lot and just overall he just had enough of the NG Tube on his nose and so have we, I hated having to tape it on his face and seeing how red his little cheek would get after he would pull it out, it was very frustrating to say the least. Well now he’s got a hole on his tummy instead, not much better, but at least is out of his way and reach for the most part, since he’s covered. They have told us that once he does get it removed that the hole will close within hours, so it won’t be a very big scar, not that it matters, since his chest is full of scars.
Well after a 3 days stay getting his G-tube put in, which is the shortest time we have ever spent in hospital ever, it was very nice. We got discharged from ICU and never did end up going to the ward, so that was nice. Having him home now almost 1 full month after his G-tube he has grown quite a bit and is just thriving more and more, we are now introducing more solids but hes still gagging on foods, so not sure what that’s all about, still investigating. overall he’s doing amazing, he just had a recent checkup with cardiology team and they were pretty happy with him and dont’ want to see us for another 2months, which is awesome news. Right now we have all come down with a bad cold and for Hudson it’s a bit of a problem because since he can’t blow his nose, he gets a lot of mucus on back of throught which causes him to throw up a lot, so hopefully we will get over this bump and have a healthy house again. We are sooo l ooking forward to spring and already thinking about what to do about Hudsons 1st birthday in April. amazing how a year has passed almost.
I am thankful, because even though we have made a few trips to appointments and we have been sick with colds, we are all together and the kids are now getting back to their fun activities and Hayden is now in a new preschool which he seems to be enjoying lots. He goes 3 days a week and he is now in swimming and gymnastics and has started a program at our church called Cubbies and seems to love it lots. Hayley is now in swimming, gymnastics and dance class and she loves all her new activities. We now have a full Calendar for everyweek and it’s tiring bringing them to such and such things, but I love seeing their faces how much they enjoy them and look forwards to those days of fun stuff they get to do instead of being home. Hudson enjoys going to all these events to watch his brother and sister and I am sure he can’t wait until it gets to be his turn.
For now, focus is to stay healthy and start exercising and keeping organized and start planning a 1year olds Birthday YIKES!! exciting, yet almost sad cause I can’t believe the time has passed so quickly.
On November 11, we asked the cardiologist if it would be possible to take Hudson out on Sunday to dedicate him at our church. He said, if Hudson continues to do well and gets off his IV medication, he didn’t see why not! On November 14, 2010, we dedicated him at the Maple Ridge Alliance Church we’ve been attending for the past 7 years and what an awesome day it was! We have missed the last 2 opportunities to dedicate him because of circumstances but this time we were able to make it happen. The church was literally overflowing with people that they put seats in the foyer! There were 3 baptisms and 3 child dedications that day!
We also had an opportunity to show Hudson’s Journey – Part 2 and here it is. If you haven’t seen part 1, it can be seen here
It’s been a while since we last posted. We hadn’t even posted about bringing Hudson back home but most of our friends and family either heard from us directly or through Facebook. We had enjoyed all the time we had with Hudson at home and I had been busy trying to fit back into the work routine. It was so nice to have him home under the same roof as everyone else and for all of us to finally be together.
Anyways, Gabby will fill in a lot of the details of the last month but I wanted to post about something recent. Tuesday night, Gabby called me upstairs shouting, “Kiddo, come upstairs… NOW!”. I went up and as I walked into Hudson’s room, I saw her looking over him in his crib. I walked into the room and once I could see in the crib and that she had the oximeter (measures oxygen saturation % and heartrate) and while typically high 80’s percent and a heartrate of 120bpm while he’s sleeping, that night it was different. His heartrate was dropping to 70’s and back up to 120’s in a few seconds but he looked peacefully asleep… I went to get the stethoscope and started to listen around his heart and as I listened… and listened…. I was just thinking to myself, “really?….. this can’t be right… hmmm…. no…. what are we gonna do?… how am I going to tell Gabby without a seriously concerned look on my face…”. I took off the stethoscope after a few minutes and had to tell Gabby the bad news… I said, “I think his heart is beating irregularly again” and then let her hear it herself… After a phonecall with the cardiologist we decided we were going to bring him in to BC Children’s. Hudson was walked through Emergency without having to wait (the cardiologist always preps them for when we get there as we get to go straight into a room without waiting), Hudson started to vomit and went extremely pale and did not look well at all. After getting him on the monitor, I couldn’t believe my eyes, he was at a heartrate of 230 again and it was all too familiar…… After a short period of time, they moved him to PICU and began talking about the starting the gauntlet of medications.
I needed to sleep but Gabby and her supermom strength always manages to stay by his side faithfully through it all. I just cannot compete with that, ever. I am always amazed at how she can do it! I will be in the room and she’s right there cradling him or half-holding him while he’s in the crib and she’s sometimes half asleep in the most awkward position imaginable…. but she’s there……..
After juggling the kids between Gabby’s parents, my mom and Adriana (Gabby’s sister who watched Hudson for a long shift as well. Thank God for a wonderful sister-in-law), fast forward to today and Gabby and I were in Hudson’s hospital room and we were staring at his monitor and we looked at each other and half-smiled, didn’t say anything but we both knew we were concerned… It was this moment that I wanted to talk about. Gabby’s eyes started to tear up and the words, “Kiddo, I don’t even know how to pray anymore” rang in my ear and an overwhelming feeling went up from my neck to top of my head. I didn’t know what I was feeling right then but I immediately tried to shake off whatever it was I was feeling… Trying my hardest to keep my composure and sort through my head as to what I could say or do, I just asked her to sit with me. I held her close and hugged her tight… my eyes welled up and as I listened to the familiar beeps and hospital noises, I opened my mouth not knowing what was going to come out, “you have been praying properly…… we just have to be patient” …..
Hudson is to be dedicated this Sunday, November 14th @ 10:00am at our church, Maple Ridge Alliance Church and we are going to try our hardest to get him there even if it’s for a few hours.
Where do I begin, I have been wanting to sit down and write something for so long, but the days all of a sudden disappear and by the time we get to bed I am exhausted and not sure why besides the mix of emotions that go with each day. Our days consist of being at hospital all morning/afternoon, going back to the house and spend a bit of time with the two other kids and put them to bed and once we are sure they are asleep, we head back to the hospital. Chris’s mom stays with the kids. Now that we are at the Ward, he no longer has a dedicated nurse, therefore, I have been staying with him all day and either Chris or his Mom come and give me breaks so I can spend time with the other kids.
Hudson is 5months old today, he has spent his entire 4th month in the hospital and 6 weeks in hospital so far. This morning we came in after having a quick breakfast with the kids, they had moved him from PICU to the Ward, but he was a happy little guy, smiling and trying to talk. He went down to PICU on Monday afternoon thinking they were going to put in a new central line or a picc line in order to run a drug called milrinone that helps with heart function. We are so hesitant about him getting any pokes because he has been tortured enough with putting a million lines in him. There was one day , before he had his surgery, they tried putting in a central line to have access for blood work and add medications and so on. I understood why they had to put it in, once they have a central line, they can take blood out without poking everytime. Anyways I understood he needed one at that time which we agreed to it. Well that was just a bad day. We were there when they started to try and get a line in him, he was heavily sedated at the time, but I don’t care, they are still poking him. So I saw them poke him 3 times in his groin area, I couldn’t take it anymore, so I steped out for a little bit and Chris came with me and we decided to get out for a bit and when we got back, I saw them change his diaper and he must have had 30 pokes on each side of his groin area. Lets just say the Dr. was not on my good books. later on I was touching his arm and decided to start counting the pokes I saw all over his One arm and I counted 15needle pokes and than I start looking at his ankles and wrists and they had poked him everywhere, I wanted to strangle the Dr that did that to him and I am not a violent person. I felt like he had taken advantage of Hudson being sooo sedated that he was going to get that stupid line and it didn’t matter how many times he poked. I also noticed they had shaved a little part of his forehead and had tried once on his head. Both Chris and I regret leaving for that moment that we left him thinking that when we got back he would have gotten the central line. Well after all that, they ended up getting an arterial line instead by mistake (in the artery instead of vein!), so now they had to send him to the radiology place to get his central line. I am not a happy person at this point after seeing him poked sooo many times. Anyways after being in the lab for a couple of hours, he comes back with a picc line instead of a central line. Well apparently a picc line is good enough at this point, they are able to administer drugs through it and also get blood work. It’s almost like the Dr’s take each kid and use them as pin cushions, to get what they want it’s not fair.
So from that day forward NOBODY is allowed to touch him unless Chris and I are around, nobody is allowed to do any blood work unless we authorize it and only if they absolutely need it. If it comes down to need, they get to try ONCE and they get one poke and that is it, if they get nothing, oh well, they’ll just have to try some other time. He now doesn’t let me stretch out his little arms because I think he’s so fearful that I am going to help them to try and poke him, he doesn’t like his ankles or wrists touched very much. At this point he no longer has veins that are good enough and the Dr’s can’t get a simple IV line going anymore, anywhere!
But after all of that and everything he has been through, he is a very forgiving little guy, he is now smiling lots and smiles at the Dr’s even.
I have missed his smiles sooo much, that is one thing both Chris and I pray about is to be able to get his smiles back, he’s got the most amazing smile that tugs at your heart because it lights up his beautiful little face and you would never know all that he has been through in his 5 months of life. In the last month he has had three cardiac arrests, a very invasive cath and his second open heart surgery which was again very invasive to his little heart. How can he smile after all of that? Well he does and looks amazing when he does it. I know God continues to hold us all in the palm of his hand, especially Hudson and his precious, unique heart. I know that patience is a lesson to be learned, I still get anxious and impatient and frustrated about everything that’s been going on and in the last week, I have come to question God as to why does it seem like one day I see his working hand and the next day it’s as if he has disssapeared? As humans that we all are, I know God understands my questioning, at the same time I feel bad for questioning because I really need to have more faith and trust in him that things will work out and that is where I have to be patient. We continue to meet other families not necessarily with the same condition as Hudson, but have endured a lot with their kids being in the hospitals for months to years. Hudson is not yet out of the hospital, but we believe he will be soon and we will get to bring him home once again and live our lives outside of hospitals.
Hayden and Hayley seem to be doing ok, with some acting up at times and when I come to the hospital, Hayden sometimes makes a scene about it and tells me he doesn’t mind if Daddy goes, but he wants me to stay with him and never wants me to leave, he tells me that I have already seen Hudson today, so I don’t need to go again. It’s so hard as a mom trying to juggle 3 kids and giving them attention as needed. They are my precious little angels and it’s heart wrenching when I have to leave them in a state of crying and pulling my leg to try and make me stay. Sometimes Hayden is really undestanding, but other times not so much, but really how much can I expect from a 3yr old? Hayley is still a bit young but sometimes I do notice her to be a bit distant. I know they miss me and I miss them so much too. As for myself and Chris, well we are just preoccupied with juggling the kids and being with Hudson and figuring out what is going on with his arrythmias, watching him closely, any new changes that the Dr’s make. Chris challenges them a lot which makes me very proud. Chris really is in the wrong profession, he should have been a lawyer, when he believes in something, he will fight until he gets his way. I know he researches stuff and we talk about it and we present our concerns to the Dr’s. Sometimes we agree with them and sometimes not but it is all for the best interest of Hudson. I am grateful that my kids have a father that will fight for them and their best interest. He won’t just randomly make suggestions to the Dr’s, he will research first and then present it with knowledge. I believe that Dr’s should always take parents concerns and observations and make a decision with that in mind. We are the ones that watch our kids 24/7 and we know him. For the most part we have met some great Drs here and are thankful for their knowledge and dedication. I understand Dr’s can’t really get too attached to a patient and that is why sometimes they come out and seem like they don’t care or have any compassion.
Please continue to pray for Hudson’s little heart and that he regains function and that his arrythmias leave his little heart alone. In the past week we have discovered that he is allergic to cows milk, therefore, is on a hypoallergenic formula for babies with cows milk protein. All this came to light when I changed his diaper one day and noticed a bit of blood in his stool. They brushed it off the first time, second time I changed him I saw a bit of blood as well and again, they brushed it off and said they would wait and see, sure enough third diaper I changed was evident that there was blood in his stool, he had bright red streaks which apparently to the GI Drs that means he’s allergic to cow’s milk or the protein of it. Chris was very upset because he’s been saying something had to be related to his feeds for the past 6 weeks now. So Chris and I decided to try this new milk he is on and it’s pretty gross to say the least, it taste as bad as it smells and Hudson we think he feels the same because he will only bottle about 10ml and than won’t even try to suck.
The last few days have been kind of up and down, I think I have become an emotional wreck because just the simplest things make me all teary eye. I feel so blessed to have my beautiful family and all our friends that support us. I am thankful that we are here where they have a great team of very talented people and so thankful for the Ronald McDonald house, I can’t say enough about the house.
I am enjoying cuddling with Hudson for hours and hours and he loves it and is getting a bit to use to it, to the point where he cries so hard when I try to put him down, he’s so sweet, he’s got the biggest pouty lip in the world and totally tugs at your heart because you just can’t say no to him, I am going to have a hard time at home with all 3 kids Yikes!!! OH well, I am just happy that we will all be together. I’ve had a few times where the two other kids have come to see Hudson and I have all of them under one roof, it’s awesome, even though it’s stressful, those are the times where I feel Ok, not worrying about one or the other when I am away from one of them.
Anyways, I’ve rambled enough and I probably still didn’t finish writing everything I wanted to share.
Yes, being the geek I am, I’ve been looking for a cheap ECG solution for home. Something we can quickly build and use to monitor Hudson’s heart rhythm. Some have asked, “why don’t you use a stethoscope?” and the answer is that we really don’t have the trained ear for it (yet). We have learned a significant amount visually and why not augment the hearing part with something visual! I’ve had moments where I feel I really need to know more about how Hudson’s heart is working.
Here’s a link to a project I have found online that I have been looking into
For a few days now, the PICU (Pediatric Intensive Care Unit) team has been trying to get Hudson to move up to the ICE Room (Intermediate Care Environment). Yesterday, a room was finally available! One step closer to getting back home… We weren’t in a rush to get up to the ICE room because he would be in a more common area and it wasn’t one on one care. However, Hudson is in a private room and the room has a small parent bed and a TV (?) and he gets one on one care still because of one of the drugs he is getting still (Milrinone). Once he is weaned off of it, they will reassess the need for one on one care and either Gabby or I will need to be there round the clock. The ICE is pretty much the same environment as the 3M unit in BC Children’s but we already think we love the BC Children’s unit better. I definitely like PICU in Stollery better than ICU in BC and was a little sad to leave the PICU unit.
Given Hudson’s fragile condition and being very sensitive to changes, we’ve asked to stay in Edmonton until Hudson is ready to go home. Well that’s it for now… a quick update. Thank you all for visiting and sharing thoughts. And especially, thank you all for your prayers!
Gabby and I were just talking and saying we should post something. For the past 48-60 hours Hudson has been fairly stable, but still quite weak. They decided to add a drug called Digoxin “to help the heart ‘squeeze’ more efficiently”. About 3 hours later after his second dose for the day (2x a day), he started to show slight signs of irregular heartbeats and I mentioned to the nurse that “this is where it started” last time and within the hour his heartrate started to peek into the 200’s again. Again, we had to be Hudson’s advocate and strongly oppose the Digoxin. It’s not a nice drug anyways as it’s toxic. One of the problems we’re noticing with these medications is that the different teams really have no clue what the other ones are doing and we’re seeing things that are most likely working against each other. For example, a drug/beta-blocker sotalol was added by the electrophysiology team to try and help with this arrhythmia but of course have no idea that he’s on an antacid and they don’t mix so well (we have to do our own reading to find this out?). Other things like digoxin raises potassium which causes arrhythmias… he has a potassium supplement… spironolactone (diuretic) elevates digoxin to critical levels, etc etc… this has been a frustrating battle but we will continue to counter or challenge them to explain why they are giving things and ask about these interactions… It was different when he was getting things through an IV because they HAVE to check things are compatible before mixing… when he gets things orally, they don’t check… I can’t imagine what his little tummy is doing when things don’t mix…
Today they changed his blow-by oxygen to prongs… why? we don’t know yet… but we do know the 2 prongs in his nostrils are annoying and they are forcing air into his airway.
Weening off of morphine was going to be scheduled for 3 weeks… three! he’s only been on it for just over a week. they will accelerate the ween after us challenging that plan. Hudson has done well with weening off morphine 3 times in the past in less than a week. “Withdrawal” scores are incorrectly inflated after being challenged by us. A lot of symptoms can easily be attributed to other things (e.g. upset when he wakes… he’s not flailing or shaking… he just had his second surgery and his tummy bugs him).
Tomorrow they will want to increase his calories on his formula again. Someone gave us the heads up but we’ll have none of that as this is the same pattern that put us here in the first place…
Gabby is saying less ranting and get to bed.. so signing off for now! G’Night! The title should probably change from “Should Post Something” to “Dad’s Update turned to Random Rants”
This weekend has been extremely rough emotionally and physically for me but more so for Hudson. On Friday night, Gabby flew home to get Hayden and Hayley and is flying back now as we speak on Sunday night.
I went for the usually daily on Saturday morning at 9am to hear what the team had to say for Hudson and spent the majority of the day with him except for a lunch break. His day was mostly stable, but the one ‘different’ thing about him is that he REALLY wanted to feed and he kept the pacifier ni his mouth for about a good 9hours. He would feed slightly from a bottle, just some 5cal sugar water around 10ml at a time, but something wasn’t quite right… he would get irritable briefly then really want more… The pacifier is the only thing that really kept him settled. Around 7pm at night they change shifts and Gabby and I usually hang around for the shift change to make sure we are comfortable with the nurse coming on duty and get to know him/her a little bit and also to lsiten to the night time rounds. I was comfortable and was about to leave around 830pm but noticed his heart rhythm looked very slightly off. I mentioned something, but I was told it was just a regular sinus rhythm (normal)… I was a little concerned so I pulled up a chair and sat beside my little boy and whispered to him for a little while and talked to him and rested my hand on his forehead by his bedside. He was irritable and hungry but really struggled to eat. An hour later, I noticed his old irregular heartbeat started to show up very infrequently and mentioned it again. They again said, it’s ok to have a few. I reminded them that this is how it started before here… and in BC. I asked what changed and they said nothing, but after I reviewed all his medications I asked them if they switched a specific drug (amiodarone) from giving IV to oral and yes, it changed. I started to wonder and then asked about another drug (metoprolol) that was given at 800pm that was supposed to help control his heart rhythm and it was given, and I mentioned that it was odd that it’s not really having an effect on him even shortly after being given.
I started to talk about the problem of him getting a 27calorie/oz formula and how it’s too coincidental that the day before we were admitted to BC Children’s we bumped his calorie from 24 to 25.5 and that evening how he REALLY struggled and was very irritable to the point that we could not console him and he was dripping sweat and how when we dropped it back to 24 the next day, he was fine for the remainder of the week (4 days) until we bumped it up to 25.5 and the day after he had problems again… This time more serious, his heart rate jumped to 230-260 and they couldn’t get him out of it… a bag of ice on his face to ‘shock’ him to take a deep breath did not work… they were about to give him a drug (adenosine) that is supposed to block the fast heart rate but I said once that this drug does not work on him he is resistent to it but they would not listen the first time and tried it anyways… I decided I better let them do their thing. It did not work and I could not hold it and said, they’re wasting time because I’m confident he is resistent to that drug because of tests they did after his surgery. Finally they moved and brought him to PICU in BC Childrens and they gave him amiodarone in bolus shots… 5 large ones for him… and he crashed and they needed to give him CPR for a good 2 minutes. I can’t even express my feelings properly here in a blog except that I would never ever want anyone to see their 4month old child have to go through that… the sounds of everything from machines to him are unerasable. They put him on an infusion of amiodarone at a slower rate and told us that his echo showed significant leaking in his heart and that his heart function had significantly deteriorated. After they had their discussion, they came back to us and said they are probably going to ship us to Edmonton. I asked why? And the answer was that they thought that’s what we wanted to which I promptly answered, “for a planned Glenn surgery, yes… emergency no, if it can be done here”. They then finally said after much prompting that there is the possibility that he needs a transplant and they don’t have a transplant program here in BC yet and apologized. We then realized the severity more and how fragile Hudson really is… I was a little bothered that it took prompting to tell us what was wrong and that they were a little hesitant about it… It was very emotional for both of us and stressful not knowing how to juggle everything, work, kids, transportation, packing, etc… Gabby went off with Hudson and I flew out quickly shortly after. I had not even had a chance to say goodbye to my other 2 kids.
I would share with anyone and everyone and all the nurses the story and experience in BC and in Edmonton about the high calorie formula. And one day finally, one of the other Intensivists finally seriously considered what I was saying for weeks about the food so they stopped it and he was doing a lot better. This led to other things where they found that he really was having trouble absorbing things in his stomach, including his medications. The ones he was taking orally were not being absorbed so who knows what has been going on for so long! The drugs were supposed to help control his arrhythmias and they weren’t being absorbed, possibly why he had all these problems in the first place for the past few weeks. It’s a little frustrating. Hudson had 3 cardiac arrests in the past week and everytime I could see them build up and could see what was going to happen I would make sure I was heard. Why was the oral version of a drug not working when the IV version was? That was another hint.
I could ramble on more but in the end, Hudson finally got off his oral meds for the time being and stopped getting the higher calorie formula and is having a lot easier time poo’ing instead of straining and overworking himself and his little heart, this is how fragile he really is. After his last crash, they had to cool his body down to 33 degrees celsius to try and protect his brain. Today (Monday) they started warming him up and making sure he remained stable. That’s the goal over the next couple days, is to keep him stable and get him in the best condition possible for his surgery.
The scariest part of it all yesterday was when he had crashed that they almost put him on ECMO (a portable heart/lung bypass machine) but I would not give verbal permission for that. Instead I went to see him and he was stable. How they hook up ECMO is not pretty and looks barbaric.
When I look back at things? I thank God for giving me the knowledge to check my sons heartbeat in the beginning and recognizing the irregular sound, and the wisdom to bring him to BC Children’s. I’m thankful for being diligent in observing him and knowing him and every little detailed change in him down to how an extra 1.5calories per ounce of formula affects him. I’m thankful for being with him up the the minutes before he was discharged from BC Children’s and him telling us ‘no, i’m not ready’ and for the doctors decisions to send us to Edmonton. In Edmonton, the teams are excellent and they know their stuff but not the intimate details we know of him. The little details helped them make the right decisions. We’re thankful he has a surgery date finally and pray that he recovers safely and quickly.
Well, the day has finally come and we are sitting in the waiting room waiting for his cath to finish, but we sill have another 3hrs to go. Well they said minimun it will take about 3hrs. So typing away as somewhat of a distraction.
We have been waiting for this day to finally get here of course because this will tell us what needs to finally happen. Everyone has prepared us for the worst of course, but we know that won’t be the case.
It is a more invasive cath because they are playing around in his little heart trying to get pressures from his pulmonary arteries, looking at his aortic arch for narrowings, and get pictures of his tricuspid valve to reconfirm what kind of regurgitation (leak) is there. So a lot of poking around inside his heart which can set him back to having arrhythmias. So they have told us they have everything possible on stanby, surgeon on standby, they have a portable bypass machine (ECMO) on standby which sounds awfully scary, but of course they have to tell us about it. I just know that he is in the best hands he can possibly be. God is holding his little hand and his little heart and directing the amazing team he chose to do this for our son. God gave these people amazing talents to work on little babies like Hudson and he guides them well. We trust the team and the cardiologist, she is one amazing person.
Psalms 8: 3-8
When I consider your heavens, the work of your fingers, the moon and the stars, which you have set in place what is man that you are mindful of him, the son of man that you care for him? ‘6 you made him ruler over the works of your hands; you put everything under his feet: all flocks and herds, and the beasts of the field, the birds of the air, and the fish of the sea, all that swim the paths of the seas. Psalm 9 : 1-2 I will praise you O Lord, with all my heart, I will tell of all your wonders. I will be glad and rejoice in you; I will sing praise to your name, O most high. ”
If God can do and has done all those wonderful things, I know he is with our little angel right now, he will heal his little heart in ways we don’t know yet, but I know he continues to be a working miracle.
Thank you to all of you for your prayers,it helps us so much to have your support.
Today has been a big day for Hudson in the sense that he’s been bugged a lot. They are currently putting in a central venus line which is also going to be used for the Cath they plan to do to figure out what will need to be done surgically for him. I had to step out because I can’t handle all the pokes they give him even though he is sedated and supposedly doesn’t feel anything, I hate it. Every time they do some procedure as putting in a line, they sedate him even more and paralyze him so he doens’t move. I can’t handle all the drugs that are being pumped in him, some seem so unnecessary, but they give them as precautions UGHH!!! it’s so frustrating and he’s so little, how does he put up with all of this, only by the grace of God, it’s painful for me as a mother watching my little angel be poked around and bruised, I almost want sedation myself so I dont’ feel any emotion. I am glad Chris is here with me because he’s the stronger one in that sense and he’s the one that speaks up for both of us, even though I have learned to advocate for my son’s well being pretty well, I still need the additional support from him. He is in there with him while they attempt for the second time to put in the central venus line, it is almost like a surgical procedure. Yesterday we didn’t leave his bedside until around midnight just because Chris was having a friendly discussion (debating) with the Dr’s on what he thinks is best for our son and I totally agree with him which is to back off on the drugs instead of adding new ones, and start to ween him of them. Needless to say I don’t know if we are in their favourite books because we ask so many q’s and have too many opinions, but he’s our son. Some Dr’s are amazing and you can tell they genuinely feel compassion , others not so much. As a mom, I care about the little things when the nurses take the time to make him comfortable and not with drugs but just a simple rubbing his forehead or putting some vaseline on his little lips so they don’t crack, putting warm blankies on his little feet that tend to be cold because of his circulation.
Anyways, considering how we went from almost being home to getting air ambulanced here, we are thankful the Dr’s made the decision to send us here, because hands down this team is amazing and full of knowledge when it comes to Hudson’s heart condition.
We have managed to get a room at the Ronald Mcdonald house again and everyone has been incredibly helpful. There is still some familes that we met from the first time we stayed there which is nice to see, but at same time it’s hard because we know they are either still waiting for a transplant or still have child in hospital and so on.
Hopefully, we will get more concrete answers once they have their teleconference with the Vancouver team.
We continue to hold onto Jeremiah 29:11
“For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE”
We know God has amazing plans for Hudson and a great future ahead of him. I am being patient and waiting for the time where I can hold him again.
So we are now back in Edmonton and it seems like it all happened in the blink of an eye. Hudson and I were flown here via Air Ambulance yesterday morning and arrived in Edmonton around 4’ish. They stabilized him quickly and he is doing much better, still continues to have the irregular heartbeats, but they are more under control since we arrived.
Yesterday, it all felt like I was just running on adrenalin and at the same time felt like in a daze. I came home Thursday night to spend the Friday with the other kids from the hospital during the day, while Chris stayed with Hudson and I was to come out Friday night to relieve him so he can go home and be with the kids over the weekend. Well as I was getting the kids ready for bed and go to Children’s, I get a phone call from the hospital saying “Your child is in distress and Dad is by himself, can the mom come here” I will never forget those words and the feeling that came over me was beyond anxious. I don’t even know how I made it to the hospital, just kept telling myself the entire way, God give me strength and get me there. Of course the worst possible things go through your mind and your heart just sinks in and I just wanted to break down right then an there while I was driving, but somehow I kept it together and made it to the hospital. I rushed into the PICU and they directed me where he was and I think I was shaking a bit inside but once I got there Chris was beside him and he seemed ok, Chris was Ok and the sense of relief came to me, but still had a breakdown. Chris then explained to me what had happened. Hudson’s heartrate had gone up 230’s and stayed there for over 2hrs, they had tried to put a bag of ice on his face to shock him and cause him to take a deep breath to come out of it, but that wasn’t working. The tried to give him a shot of Adenosine but Chris kept telling him that he was resistant to that. They then had to move him to PICU to give him some drug called Amiodarone to try and get him out of his fast heart rate. They gave him a bolus shot (large dose at once) and after the 5th bolus he crashed and and his heartrate dropped to 30, and they kept him at 30-40 by doing manual compressions of his chest. After a couple minutes, Hudson snapped out of it. So by the time I got there he was pretty stable and looked ok. Chris is thankful that I wasn’t there when that was happening, since he deals with things like that a bit better than I do. I just become an emotional wreck which probably doesn’t help the situation, but nonetheless I try to have composure but at this point I don’t care if I am crying in front of a million people.
So since the new drug that they started to give him to help with the arrhythmia’s didn’t appear to be help and after assessing the echo they did, the decision was very evident that they needed to send us to Edmonton. The echo indicated that there was a lot of leakage coming from the tricuspid valve, which is not a good thing because it’s his only valve to his one and only pumping chamber having only half a heart. The heart function was questionable in Vancouver from the echo, which forced them make the urgent decision to get together a team within 40min to get us to Edmonton as fast as possible. We weren’t really understanding why he had to be sent to Edmonton even after asking a couple times. Chris then asked, what options are in Edmonton that aren’t here? Their answer was that there is the possibility for the need to have a heart transplant if the valve is as bad as they think and cannot be repaired… and since Vancouver doesn’t do heart transplants at this time Edmonton was the way to go. When they said the word transplant I think I wanted to start bawling my eyes which I did once the team left, I think it has been one of my biggest fears with him having a unique heart anatomy. I’ve always known that it has always been something to consider in the future, but never thought that I would be discussing that at this time in his life. It is scary to me because I have come to know so many people that are waiting for hearts for their little ones and have been waiting months and months.
So just as they said, the air ambulance team was ready within 40min and they decided to intubate Hudson for the trip, which is an awful thing to see or have done and I know how much he hates it. Once we got to Edmonton they decided to put an arterial line to take blood out when needed for testing and blood gases and so on. Good thing about that is he doesn’t have to get poked every time they need blood work, which is a lot, like every 4hrs. They have given him a drug to paralyze him as well as morphine and midazolam to settle him and keep him still, which looks extremely horrible and cruel and I just want to rip out every tube out of him and hold him, but also know that he needs it right now. It tears my heart to see him like that, because he went from smiling and kicking his feet and talking up a storm and smiling big in response to ‘is that funny?’… to not being able to move at all and having a million tubes on him. I have a hard time looking at his little face, i keep thinking he feels like how can you allow them to do this to me Mommy?, how can you? But I have to, I have to let them do what is best for him and I ask God to give me strength to see him this way because it’s not him, it’s not my little baby, i want my smiley boy back,I want to squish him and kiss him and never let him go, this is sooo hard, it feels like everything just intensified all of a sudden. It sometimes doesn’t feel like I am really here, my eyes are swollen from crying so much and everything seems blurry which doesn’t help. I am still coherent and understand what is happening and all the discussion we have had with the Dr’s. They will be doing a special 3d echo tomorrow which will show clearer pictures of his valve and the function of his heart. So far they have told us it looks like his heart is functioning well with a few hiccups which is a plus, but they do need to see if the valve needs to be repaired and we pray that it doesn’t and that his unique heart will continue to be part of him.
As for our two other kids who I am missing sooo much and can’t wait too hold them, are being taken care of by my parents and sister and Chris mom. I can’t ever be thankful enough for the time our family is putting in to take care of our kids and love them, I just can’t be grateful enough and I know even though I want my kids with me, I am at ease knowing they are safe with them.
For now all we can do is hold on tight and pray for Hudson’s recovery to be speedy and for God to be in control of it all which I know he is and he is what is holding us together. The big decision making by the Dr’s will happen most likely on tuesday since that is when they have regular meetings with the Vancouver team.
Quick Update. Gabby and Hudson flew off to Edmonton around noon today. I came home, packed up a few things and am heading to the airport. Hayden/Hayley’s grandparents and tia will watch them for a while till we know more out in Edmonton. basically, they could not do anything more here in Vancouver. Unsure what Edmonton holds in store for us.
Instead of watching for meteorites and northern lights tonight, I’ll be listening to the poor screaming boy next door and gazing at florescent lights for the evening… Hudson has to stay another night. I knew he’d be here another night when I got to the hospital at around 6pm tonight and was watching his monitor and noticed a “frequent SVPBs”, and “Irregular Heartrate” showing up on his monitor periodically. As I type, another SVPB shows up while he rests. An SVPB apparently is a supraventricular premature beat; a ‘beat’ that originated at the top of the ventricle too soon. It doesn’t seem to bother him too much but they need to observe him. My poor little guy, i can’t stand seeing him go through these little things and I am really feeling powerless to do anything about it.
That’s it for now… Need to try and find something to eat, wasn’t really planning on being here another night but…..
Yesterday we had a chat with the team and they want to monitor Hudson for another 48 hours. I was with him last night and he did well. He slept through the night except when he was hungry at 3am. His sats were between 70 and low 80’s with the occasional dip into the high 60’s and reaching the low 90’s. I’m beginning to hate this sat monitor. 😀 While it was kind of cool in the beginning, at the same time it’s annoying to be fixated on it too much. I have stared at my son long enough that I can do a half decent assessment of him by looking at him. Even with his sats jumping around… he looks fine! Really only need to be concerned when he’s really upset and i see the blueness a little more.
The tentative plan is to discharge him on Thursday. When they do rounds in this morning, I’m not inclined to mention every little weird observation that lasted a couple seconds. When he’s perfectly still and resting… the sensors can get a proper reading…. and his readings are fine. We can take that as his baseline .
I haven’t noticed any arrhythmia’s overnight. It’s another one of those things I am fixated on watching… his heart monitor (telemetry) on the screen for long periods of time. It seems the increase in medication is doing it’s job.
So for now, its looking like Hudson is telling us he will tough it out (with drugs, so it’s a different tough-it-out :D) the next 6 weeks or so. During rounds this morning, I will ask what it means for his tricuspid valve and if there is any risk to it worsening before his Glenn and the answer I probably expect is something like, ‘it’s possible, but we don’t expect it to be’. Don’t get me wrong, I love all the staff here… They are THE best… It’s just hard not being able to get any definitive answers at times… We’ll all just nod our head and say the famous one-liner, “It all just depends on him”. After the Glenn, it’s possible the relieved pressure in his heart will allow his valve to recover as he grows.
Hopefully there will be more info today! Thanks for Reading… One day Hudson will read all this, probably won’t know any different and say, ‘whats the big deal, dad? I’m here’ I love you my boy…
Hudson has been moved from ICU (PICU) to the ward (3M Unit) this morning. They want to monitor him for a few more days and have been communicating with the team in Edmonton on next steps. There are two things that are of concern:
1 – His oxygen saturation drops below 60% sometimes. Should be mid-70’s
2 – His tricuspid valve (the one between the right atrium and ventricle) is moderately leaky/regurgitating.
They need to decide:
1 – Does he need another cath to put a stent in his right pulmonary artery? We would have to go to Edmonton for this. However, Edmonton doesn’t prefer doing stents. The good news is Hudson’s sats are high 70’s the past little while
2 – Do they do the Glenn (2nd operation) early?
Pros:
Relieve some pressure in his heart and especially on his tricuspid valve.
They can fix the narrowing in his pulmonary artery and don’t need a stent.
Cons:
His veins coming from his head are not “mature” enough. They would like them to grow more before operating. Doing it early would most likely result in another cath at a later date and we would like to avoid this.
His lungs could do with developing a couple months more since the pressure will offload his heart, but now move towards his lungs.
Not doing the Glenn now, MAY put his tricuspid valve at risk. This most likely cannot be repaired and result in needing a heart transplant. They may be able to control his heart function with higher dose drugs which is what they are monitoring for the next few days.
Will most likely not address the arrhythmia issue. The reason why we showed up at Children’s in the first place.
Well, Gabby has spent the last 2 nights at BC Children’s. I will be heading in soon to trade places. She will come home, pick up the other 2 kids for the night. She’ll drop them off tomorrow at inlaws and friends and then come into Children’s where I’ll then go to work. At the end of the day, she’ll go home and repeat…. until a decision is made
Today was Gabby’s Birthday and for those keeping track, events seem to happen on some significant day (e.g. Easter, Mother’s Day, Canada Day, 5th year wedding anniversary, Gabby’s Birthday). Once again, Hudson is admitted to BC Children’s and we expected it this time. Hudson was very irritable this morning and inconsolable. He was upset so much that he started to drip sweat and we had a cheatsheet of warning signs to watch for CardioRespiratory failure and he was matching a lot of them. For the most part, I have not been concerned about things happening here and there, but this morning was different and I was in a bit of a panic asking myself, "is he really having congestive heart failure? What changed? It can’t be that sudden? Maybe the increase in calorie milk? We just changed that yesterday… " so many questions running through my head at 4:30 in the morning… I paged the cardiologist on duty and after talking briefly he thought that its possible the increased calorie formula might be irritating him… he had a big bowel movement part way through his screaming and yelling…
So I couldn’t sleep after that and I couldn’t stop thinking about what’s going on… I put my hand on his chest and I had a thought in the back of my head that his heart wasn’t beating right… wasn’t consistent… … hmmm… I grabbed the stethoscope and listened to his already unique heart that I have grown to be very accustomed to and it’s unique sound with the shunt making the whooshing sound with each beat… But this time the whooshes would skip beats… I was wondering if it was my imagination that this has always been the case… So a few hours passed and Gabby and I were about to give his 630am medication and we thought we better ask first…. and then after talking to the cardiologist again about the irregular heart beat, he thought we better bring him in. We knew what that meant…. he was most likely going to be admitted for observation again… we packed a few things and after a quick call to the in-laws who have always been so so so so SO VERY helpful I don’t know what we would do without them, they showed up and Gabby and I went to Children’s.
After describing what I could hear in the stethoscope, I must have thought I was imagining things because the nurses in emergency and doctors couldn’t hear anything out of the ordinary until the cardiologist I spoke to on the phone came down and I described it to him again… he listened for a while and then.. he finally turned to me and said, "ok, I hear what you are talking about…." He looked up on the monitor at his heart telemetry (the typical wave/spikes you see on any heartbeat monitor either on TV or in hospital), and he saw the irregular heart beat and pointed it out… it was now very obvious once you could see it on the monitor…. and it was happening more frequently…
…. it was now a waiting game and hudson was admitted to ICU (PICU) for the next 24hours to start.
Dr. Human (head of cardiology and Hudson’s cardiologist), mentioned that his tricuspid valve (the valve basically taking all the pressure of blood from his lungs and body at the same time) is in a moderate stage of regurgitation (on a scale of 1+ to 4+ with 4+ being severe, he was a 2+). What does this mean? He may have to have his Glenn, the second stage surgery sooner. What does it mean to have it sooner? his 2 superior vena cava (SVC… and having 2, which is another unique feature of Hudson…) may not be full size. So 2 things, it’s harder to operate on, there are 2 of them to operate on, and since he will have them "stitched" early, they may need to be stretched through another cath procedure in the future. It also means we will have to have it done in BC. Gabby and I would have wanted to have it done in Edmonton because the surgeon there has seen inside Hudson but he is off all of August.
Around 4pm today, Gabby and I took an hour to ourselves to go to the Papaya Hut for quick eat together. I then left for home to pick up our other two to prepare them for bed… and it’s now time after this somewhat quick update…… and my poor Gabby has to be in hospital with Hudson on her birthday…. Sorry kiddo’s 🙁 love you both and we’ll make up the time. See you tomorrow.
Our friends the Miranda’s, have a little girl who had her first surgery to reconstruct her aortic arch and is doing well! Isabella’s diagnosis was a little different after she was born as she had a small left ventricle and they decided to try and see if it would grow! We are praying for them as they wait for the next 3 months to pass and see how it develops! Amazing! … and also praying the family remains strong 🙂
We had an appointment last Thursday and looks like it’s time to schedule Hudson’s surgery soon 🙂 They will let us know a date
Today, Hudson’s friend Cooper had a successful Glenn (The second of three surgeries). Yah! We are very happy for him and have been praying for his success. He is about a month older than Hudson.
Next Thursday, Aug 5/10 we’ll be at Children’s talking about scheduling Hudson’s Glenn. We’ll most likely be going to Edmonton for this. We kinda wanted to meet up with Cooper and his parents if somehow it worked out like that but not this time.
Hudson is 11lbs 3oz today (5076g). They usually want about a 5500g to 6500g weight and he’s been gaining close to an ounce a day (he has slowed down a bit since he turned 3 months but this is expected).
Gabby is with Hudson tonight meeting up with the Children’s Heart Network group in Langley this evening. It will be the first time they have met Hudson. Hudson is doing well otherwise since his cath to get his pulmonary arteries dilated. So we’ll see what happens next week!
Today Hudson turned 3months old. Hard to believe my little guy is already that old, he isn’t a tiny little newborn anymore. Sometimes it seems like the time went so fast but other times just feels like I just got him home. I mean it’s weird he was in hospital for the first 5weeks of his life. I think he will always be my baby boy no matter what but he still seems like my newborn.
He is doing really well. His saturation levels range from average 77 to 86 sometimes. So we are definatly happy with the results of the Cath he had done almost 1.5weeks ago to dilate/stretch some arteries to his lungs. It sure is nice to have him at home and just hold him without any tubes and IV’s all over him. I really hate that part of being at the hospital… and that they just want to put a needle in him and take his blood, sounds so vampire’ish almost HE!! but really that’s all they do at the hospital. I was on 24/7 clock so they wouldn’t touch him, i am still trying to recover from so little sleep.
He is becoming an active little guy, he’s starting to be responsive when you talk to him and smiles back at you and kicks his legs when he gets too excited, his heart rate goes up when he gets super stoked about his silly brother and sister. He loves music and loves when Hayden or Hayley sing to him. He really likes it when Hayden plays peek a boo with him. Tummy time we just started to do. His favourite sleeping position is lying on mommy’s chest and he can sleep all day, but I started to try to put him on a pillow for tummy time and he’s doing Ok. His sternum has healed so nicely that I don’t think that’s any concern with tummy time.
He’s a really good baby, I mean he cries when he’s overtired and can’t go to sleep and when he’s hungry or when he’s been sitting in his poopy diaper for too long, not that I ever let it get too long, I usually can smell it across the room, it ain’t a pretty scent that’s for sure. He is gaining really good weight, approx 30 to 50 grams a day and is bottling approx 80ml to 90ml every 3hrs. I am so happy to see him grow, but at same time I just want my little baby and hold him forever that small. Lately he wants for me to walk him around so he can hold his little bobble head up and look around a room, sooo cute, I just love kissing him and holding him tight just cause I just simply love him.
I think he just discovered how to interlock his hands and stare at his fingers and hands and suck on his fists.
It was so nice to be able to take him to the beach last week. I was a bit scared to do so, just because i am paranoid about him catching any sort of bug because it will mean a trip to the hospital for observations again! But it went well and he did well, he loved the wind on his face and he got some nice fresh air. The last week has been pretty hot and he loves to just hang out in a onesie and kicks off his blankets if we put any on him. But he has been getting pretty clammy on his hands and feet, the Dr said it’s fine but of course we panic about any little thing with him. Maybe it’s just the hot weather lately
It’s been a few days since we were able to come back home thankfully.
After Hudson’s catheterization on Saturday evening, everyone was watching him to see how he would do. On Sunday his sats were still bouncing around a bit and I was getting overly excited and anxious. One moment I heard he was doing well and his sats were up above 80(%) and the next thing we know they are back to the low 70’s again. He was in PICU after his cath on Saturday evening and Sunday and had yet another incision in him, this time near his groin area where they went up a vein and in though his heart and through the Sano Shunt to get to the narrowing area. Sunday evening I went to see Gabby and Hudson while Hayden and Hayley were with others. It was midnight and Hudson was still in PICU and Gabby wanted to stay the night again so I decided I should get back home. I had taken Monday off of work and on that morning he was moved to the ward (3M Unit) as his sats seemed to bounce back and stabilize in high 70’s/low 80’s. Since Gabby had been there a few days already it was my turn to take care of him overnight and then head to work the next morning. By late evening, he was smiling and responding nicely to my voice! I would ask him, “Is that funny?” and he would smile and smirk… We played this game for a couple hours that evening. It was so nice to see him a lot happier and making “nice” sounds 😉 He had a really good night and they were talking of him going home. So the next day he was doing well and we were able to take him home. Gabby actually was the one that was able to take him home, I had already left for work.
Thanks to all your prayers (and some “nagging” by Gabby (she said it!), Hudson is now getting the cath to balloon/dilate the narrowing as I type this! Wow, I don’t even know what else to write here, this is so exciting.
Yesterday (Friday, Jul 2, 2010), Hudson was the 3rd case scheduled for a cath procedure to dilate/balloon the narrowing at the top of this Sano shunt to pulmonary artery. Unfortunately, they couldn’t get to him and he was rescheduled for Monday, July 4, 2010. Seems to be a recurring theme for events happening on some specially recognized days (e.g. Easter Weekend, Mother’s Day, July 4th). Today, Hudson’s sats have dipped into the 60’s and seem to have stayed there and enough of a concern by the doctor’s that they’ve moved him from the children’s ward (3M Unit) to ICU. In ICU, he will have 1 on 1 care by a nurse. Gabby is at his bedside today and will spend the night with him. Today, I spent time with the kids… went to Mission to fill up with gas and showed Hayden the West Coast Express trainyard since he loves trains so much. We stopped by Maple Ridge Park on the way home and they love the swings. Hayden has been climbing the rockwall there and enjoys it alot so it might be time to take him to the climbing gym!
So now we wait… more waiting… Please pray that Hudson gets the procedure done soon and that his sats don’t dip too far.
The Glenn Procedure is the second of three operations needed for Hudson. It usually happens around 4-6 months of age depending on his oxygen saturation and weight. He weighs 4.435kg July 1, 2010. His discharge weight was 3.14kg on May 28, 2010. They would like his weight to be at least 6.0kg. His oxygen saturation is dipping too fast at his age (only 2 months) and requires a catheterization to balloon stretch the join from Sano shunt to pulmonary artery. Also consider scheduling us to be in Edmonton and the surgeons availability! 😉
Well it’s wednesday June 30th or wait… it’s midnight so I guess it’s Thursday July 1st? Oh wait it’s Canada day DOH! We get to miss it… Oh well, next year. It’s been 5 days at the hospital already, that almost went fast. We even got to spend our 5th year anniversary at the hospital, well I did, Chris had to be with the other two kids. Time does fly when you’re busy with 3 kids especially when one needs special care, trying to coordinate who will take care of which kid and making sure Hudson is never alone in his hospital room. So far we have managed pretty good. Our family of course always comes through for us and we couldn’t do it without them, truly we just couldn’t. I know I would be crazy by now if I didn’t have the amount of support I have from them and from friends. Well there has been times where I do feel like screaming and just bursting into tears because it can get overwhelming not being able to be there with all the 3 kids and there has been times where I’ve had to bring them to the hospital and I just want to rip my head off because all I am doing is telling them not to touch anything and to just stay still and of course that’s nearly impossibly to ask a 3.5year old and a 22month old. I think I am just mainly frustrated with myself when I get cranky with the kids, just because I am so overwhelmed with stuff that it seems anything annoys me, just little things like them talking loud and they are kids UGHH!! I hope my kids won’t resent me for being such a psycho mom sometimes.
Anyways, it’s been a rough week to say the least. As Chris already mentioned a regular check up turned into a hospital stay for a week almost now. Hudson is needing oxygen because his saturation levels are declining, gradually, but still declining to the 60’s and that’s not good for him because he’s not getting enough oxygen to his body. He really doens’t seem any different unless your looking at the numbers, he sometimes looks a little bit more bluish, but I often think it’s the lighting in the room, but really it’s not, he is actually a bit bluish. The cardiologist says that he is still too small for his saturation levels to start declining so that is what was so concerning to them so that is why they decided to do the CT scan which turn out to be a good thing because it showed that he does have a narrowing from the sano shunt to the pulmonary arteries which will need to be stretched out to open proper flow to the lungs and to give us time for his next surgery, which shouldn’t happen for at least 2 more months for now. So the cath they are planning on doing is going to buy us some time for him to grow more and be ready for his next surgery in a couple of months.
So now we sit and wait for him to have his cath instead of going home with oxygen, they want us to stay in hospital until cath is completed which means we are here for at least another week or so, which isn’t great because it means more juggling the kids around which just breaks my heart. I am now starting to see how much all of this change is actually affecting them. They are more clingy towards me and Hayden decided he wasn’t going to be potty trained any more and Hayley walks around saying “It’s ok, daddy is coming” when something goes wrong she thinks daddy or mommy can fix it all it’s sooo cute, mainly big tough Daddy HE! HE!
So have I said how much we dislike the hospital and we’re sure Hudson does more so than anyone else. He hates having the oxygen prongs on his face poking up his nose, like hates it. I’ve never ever seen him move his head from side to side soooo much trying to get them off of his face, he is constantly trying to pull it off. He can also smell the people that try to come and draw out blood for testing, he starts to loose his mind alongside with Mommy because I really hate it when they poke him to take more blood out. Thats the thing that bugs me the most about hospital stay, they think they can come everyday and draw blood out of him and make him cry to the point where he’s so pale, it is extremely heart wrenching. I know sometimes it’s necessary to have his blood drawn but not all the time and that’s what bothers me soooo much. Chris and I have put up signs on his crib that no one is allowed to take blood from him unless we are here and we literally don’t leave his room in fear of someone trying to take his blood. He now has an IV but nothing going through it, they just put it in because of the CT scan they had to do, but he’s got two, one on his hand and foot, really annoying actually, so much harder to pick him up with all this stuff GRRR!!! Well if you haven’t been able to tell I am really frustrated, but at the same time I know we have to stay in hospital until he gets his cath and it’s for the best for him, this will help him out a great deal.
One great thing is that he still is gaining weight very well and eating very well, so that is something to be sooo grateful for because without him not gaining it would mean he would have to have the NG tube back in and we really don’t want to go there, so I am sooo thankful he is still doing well in that department. He’s getting soooo long and almost doens’t look like a tiny baby anymore 🙁 sad in a way but great because I know he’s growing healthy in that sense. He is 10lbs today, YEAY!!!
Anyways that’s my venting out moment, Ok feel slightly better.
Over the past 3 weeks we’ve noticed Hudson’s oxygen saturation decrease. It’s usually been around 80% but has been decreasing to the low 70’s and sometimes in the 60’ish range. This is expected over a much longer period of time as he outgrows his Sano shunt (the gortex piece of tubing from his right ventricle to his pulmonary artery)… but he is dropping much quicker… We usually update the cardiac team twice a week and last Friday they asked us to come in. He ended up being admitted and they wanted to keep him for overnight monitoring. He had an x-ray and an echocardiogram and things looked ok, the shunt appeared to be in the right place. The next step was to have a CT Scan for a more complete look at things. This was scheduled for Monday. It’s been a battle all weekend to try and minimize the amount of poking with needles our little guy gets… We have to be on top of it because they think they can order blood like he’s a Drive-Thru at a fast food restaurant or something and sometimes they don’t get the vein right away only to dig around with the needle trying to find it. We can’t stand it and it makes us angry that they keep sending someone from the lab up to get blood only for us to turn them away… We always have a sign up that says “NO BLOOD WORK UNLESS PARENT IS PRESENT”.
Today he had the CT Scan and the preliminary report shows that there is a narrowing where the Sano shunt is connected to the Pulmonary Artery (aka PA – brings blood to the lungs to get oxygenated). So they’ll have a closer look at the scans and decide what to do because he’ll need a catheterization, and either balloon the narrowing trying to stretch it or put in a stent to keep it open.
So now it looks like we’re here longer…. possibly most of the week… UGH We weren’t expecting this… This is going to be a hard one trying to juggle someone being at the hospital with Hudson overnight and with the other two kids.
Interestingly enough, all three kids will be at BC Children’s for something tomorrow… Hudson is just here in Unit 3M where I have been blogging on/off this entry for the past 3 hours and tend to him, Hayley has a checkup and Hayden is getting his teeth fixed first thing in the morning (he has to go under general anaesthetic). Gabby and her sister Adriana will be coming in for a 630am appointment tomorrow so they’ll have to wake Hayden/Hayley up early… Might not be pretty especially when the kids seem to have been going to sleep later these days (9pm+). They need at least 12hrs or they’re cranky, but who wouldn’t be 😀
Hudson seems to be OK at this moment… He’s been feeding every hour since he hadn’t had too much today… a good 10hour stretch without formula… I don’t know if they gave him much during his CT Scan. The scan itself is only a few minutes but the prep is the long haul.
Well, we’ll see how it goes this evening with him, I have tonights duty at the hospital while Gabby takes care of the kids at home. Poor grandma (“Poyita” as the kids call her) had them both today while we were with Hudson at the hospital…
We’ll wait for the actual report and decisions hopefully tomorrow morning…
I’ve had a draft of this post before Hudson was even born… I just never got around to completing it until now….
–Chris
Three-stage surgical procedure
A three-stage surgical procedure is an option for some babies and was for ours. These operations have commonalities for every case but there are specific things that are unique for every case. These operations reconstruct our baby’s heart so that the single pumping chamber can work for the rest of his life. Hudson had the first operation at 7days old. The second operation is performed around 4-6 months and the third operation is performed around 18 to 48 months. After the operation is complete, it allows separation of the blue blood (blood without oxygen) from the red blood (blood with oxygen).
Stage one operation
The first stage is called the Norwood Procedure. Because the left ventricle cannot pump blood adequately to the body, the Norwood procedure allows the right ventricle which normally just pumps blood to the body, to now pump blood to both the lungs and the body. The procedure involves reconstructing the aortic arch (the main blood vessel supplying blood to the body) and inserting a tube (Sano Modification) that connects the aorta to the pulmonary artery (the blood vessel which supplies blood to the lungs). Most babies coming from this operation will still look bluish after this first-stage operation. In Hudson’s case, he does look pale and/or a tinge of blue at times.
Stage two operation
The second operation, called the bidirectional Glenn procedure, reduces the work of the right ventricle by allowing it to pump blood only to the body, and allowing most of the blood to flow directly from the body into the lungs. After this operation is performed, all the blood coming from the upper body is sent to the lungs so more blood with oxygen is coming back from the lungs to the left side of the heart. Hudson’s case is slightly unique here in the sense that instead of one superior vena cava (SVC) coming form his upper body into the right side of the heart, he has 2; one coming down from the left and one coming down from the right. The “bidirectional Glenn” procedure now becomes bilateral and bidirectional meaning that they will have to tie in both SVC’s into his pulmunary artery (artery to the lungs). Thinking like an Engineer, this almost seems like a better way to go – Left SVC to the left lung and right SVC to the right lung. But of course, in reality… it just means there is more “rearranging” that has to go on in his little body. A few people have told me that as a man, going through the 2nd and 3rd operations are a little tougher on the dad than the first one because of being able to interact more with their child. I constantly have the thought of how I’d feel about Hayley who is coming up on 2yrs old and how I’d feel about her going in….
Stage three operation
The third and final operation, called the Fontan procedure, allows the rest of the blood coming back from the body to go to the lungs. Now there is no mixing of blood with oxygen and blood without oxygen in his heart. After this operation, he will no longer look bluish/pale. With more oxygen-rich blood going to the body, his general health and growth will improve.
Long-term follow-up is needed to monitor the function of the reconstructed heart and blood vessels. We’ll have many follow-up checkups with the cardiac team at BC Childrens including echocardiography, an ultrasound to check the heart pump function and the blood vessel as the child grows and develops. Two heart catheterizations are typically performed over the first 2 years, usually just before each of the next 2 surgical stages, after the initial Norwood procedure.
In a heart catheterization, soft, thin plastic tubes (catheters) are placed in the large blood vessels in the leg and threaded carefully to the heart. The catheters are used to take more accurate pressure measurements inside the heart and to inject contrast or dye so pictures of the heart can be taken. Overall, they say this is a very safe test and children can go home the same day.
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I found a couple cool 3D models of a normal human heart for reference of the different arteries and veins I talk about above. I really want to model Hudson’s Heart at each stage sometime in the future. Try clicking on the model below and rotating around and zoom in/out.
Sorry, we’ve been slowing in updating the blog… Here are a couple more recent pictures of Hudson!
Hudson has been doing well gaining weight, he now weighs 8lbs 9.1oz/3.886kg. We continue to give him his medications at 630am and 630pm as much as we hate doing it.
I continue to go to work after we are done in the morning leaving around 730am and try to be home by 500pm. The routine is completely draining on all of us and Gabby being at home with the kids all day is taking its toll.. I’m a LOT more tired lately and I’m finding I’m not tolerating much. When the kids whine, I get really annoyed and getting annoyed is becoming more frequent.
Hudson is still far from smooth sailing as there is still so much to monitor and be careful with. Most of family and friends have been very kind to understand why we’ve been fairly strict in that Hudson is at a higher risk of problems if he did catch something like a cold. A simple cold would mean we already have to consider calling 911 because of a risk of congestive heart failure especially if the cold starts to get into his lungs. Not good so we do take some extra precautions and very thankful for your understanding!
Our family cannot be thankful enough about the many dinners personally brought to our door. I don’t even have words that can describe how grateful and helpful it has been to us. So i want to again say, a big thank you Thank You THANK YOU!
It’s after midnight now, and I know I have so much more to say but I can’t think of it right now, I will continue to post as I think of them!
It seems so long since I last was able to sit down and write something. Every time I try to sit and write I either get interrupted or I am falling asleep. I did attempt to last night but fell asleep on top of my laptop OOPS!!!
Well it’s busy times for sure, but not terribly bad. I am enjoying having Hudson home a lot and he’s so cuddly, really is just awesome holding a newborn baby, just the smell of them and how soft they feel, I love it. I think he’s also getting used to just being held and walked around which I don’t mind holding him but the other two kids need something at all times. Hayden has been extremely good with Hudson, he is very protective and always touches him very gently and knows to wash his hands before touching him, we don’t even have to ask him anymore, he just goes to wash his hands if he wants to stroke his head or something. He gets upset when Hayley isn’t being gentle with him, because Hayley is a bit different, she likes to poke his eyes and if we tell her to be gentle she gets rougher with him, so we have to be a bit more careful with her for sure. They both try to help me out when I am changing Hudsonss diaper… they both want to be the ones to bring me the diaper and wipes and sometimes they fight over who brings me what. Cute, yes but one of them always gets hurt HE! HE! Hayley is now really into dolls and has one that has a bottle and she carries it everywhere with a blankie and the bottle, I think she is totally mimicking me with what I do with Hudson. She’s a total girl really because Hayden wasn’t like that when she was born. Anyways, overall they are doing well, they do get restless because I can’t take them out at all these days because well we don’t have a car that fits all 3 car seats and Hudson has been fighting a small cold and I am waiting for him to get better to take him anywhere really. My family and Chris’s mom come and take the kids out for walks and stuff which is much needed because they need the fresh air. I need the fresh air, but luckily it hasn’t been that great outside anyways so staying in hasn’t been too much of a compromise.
Today well, they are both napping I think anyways. I sent them to their rooms for quiet time, well really to nap, but Hayley kind of uses it as her alone time in her room and just reads books until she falls asleep on the floor. Hayden had a complete meltdown because he couldn’t find some blocks he was looking for, so I said you need sleep, sent him to his room. Hudson is in and out of sleep really. I don’t know how he can sleep with the other two being soooo loud. So now I sit with a moment to write, which usually turns into a book like Chris would say. Since my thoughts are all scattered so is the writing I am sure.
Anyways, Hudson continues to thrive even though as soon as we brought him home he developed a cough, but we have since taken him to his first cardiologist appt and they assured us that he is dealing with his cold very well and it sounds worse than it is and it’s not in his lungs which is really important for him. It has almost been two weeks and he is doing much better. One big thing we have not yet documented is when we decided to take out his NG tube out. It was Friday June 28th so it’s been six days without it and he is doing great. We decided to take it out because he had been drinking from a bottle for 3 days straight and breastfeeding and no need for the NG feeding tube, so we pulled it out and haven’t looked back… I am sure he would thank us and even his cough sounded better when it came out. Overall we think he is more comfortable and so are we since we didn’t need to be so careful accidentally catch it on something it because it’s soo long. So it’s been 6 days and he has been feeding from a bottle every three hours and breastfeeding in between when he wants to. I find breastfeeding is a bit harder for him because he has to work a bit harder to get the initial milk, whereas the bottle it’s right away, but overall he’s doing really well with it. He is gaining appropriate weight. I think today he is 8lbs YIKES!! he was 6lb 15oz at birth, so not too bad, considering he didn’t eat for 3 weeks after birth, well ate but not real food, just IV stuff. We are so amazed at his progress so far and we knows it’s because everyone is still praying for him and us and because he’s our little miracle that God placed in our hands to care for. Everytime I look at him, I am just amazed at what he has already gone through and if you were to see him without opening up his PJ’s and seeing his scar, you wouldn’t know there was anything wrong with him at all. He looks to me like a normal 6 week old baby boy. I sometimes even forget we have to be extra cautious with him in how we hold him because he is still healing, so we can’t pick him up by the armpits just yet because his sternum still needs to fully heal, his scar looks amazing and it’s healed just awesome. I don’t know I sometimes find myself just thinking that he seems like the other two kids and when he’s awake he interacts like a 6week old. I guess obviously the reminders that he really only has half a heart is when we have to give him his medications morning and night and when I open up his PJs but even his scar doesn’t bother me too much, I am almost just sooo proud of it for him because I am soo proud of his endurance and amazing strength. I think right now the only thing that really bugs me is that I know he will need to be cut two more times and that’s hard to handle at times. I mean he is still a working miracle, God isn’t done with him yet, I know that for sure.
Well, it has turned into a mini book and I am sorry for the readers that like the short updates HE!! I leave those up to Chris to make, I like to ramble on about stuff.
My little man calls, he’s awake again, I am sure I’ve missed stuff I wanted to write but can’t think of everything. OH, sleep is a thing of the past HA!!! but somehow we are functioning great. Chris helps me out in the mornings lots before he goes to work and helps give his meds and has breakfast with Hayden because Hayden doesn’t like to sleep in, it’s unheard of for him, so 6:00am. he is up and about already, no chance at sleeping in for me that’s for sure. Also at night time when we have to give meds again and get all 3 kids ready for bed.
OH! one more thing, we also made an executive decision to discontinue giving Hudson one of the drugs that was prescribed to him for stomach reflux, it’s called Ranitidine and really all it is an antacid, like a tums (actually Zantac) he had to have twice a day which we felt is was not needed because he wasn’t throwing up anything for the last 6 days, he has actually kept all his food in, whereas with the NG tube he spat a lot of it out, which was another reason we took it out. So one less thing to have to give to him unnecessarily. He hasn’t gagged or spat up anything since, so we are happy with our decision. Yeah the Dr’s are going to think we are rebels for taking his NG tube out without their permission and now a drug. Well we wouldn’t take away his heart drugs but this one was really not needed.
Ok, he’s getting cranky, must go, until next time.
Honestly don’t know why I’m up, I’m exhausted but for some reason I can’t sleep….
It’s coming up on Day 6 for Hudson being at home. He’s doing pretty good, he’s gaining weight and Gabby and I have diligently been feeding him every 3 hours. First we started with the pump and that was taking an 1hr for setup/teardown and wash! Close our eyes and it was time to do it again. We recently switched to a ‘gavage’ feed where a syringe is just filled and he is feed through the tube by gravity. This went so much faster and was quicker than the pump and easier to clean up.
Some ask why we don’t take turns, but we both felt obligated to ‘observe’ him because there is so much to watch especially since he’s also got a cough/cold 🙁 We’re worried about his congestion getting into his lungs leading to congestive heart failure. His whole circulation is completely different and his “heart sounds” are different through a stethoscope. It’s quite amazing to hear. Normal hearts have 2 pumps – a left and a right, each with two chambers – 1 to collect blood from body and 1 to collect from the lungs and 1 to pump blood to either the body or to the lungs. Hudson’s amazing little heart has been made to work with 1 pump where the top two chambers are made into one to collect blood from both the lungs and body and the right side pumps blood to both the lungs and body. His blood is still ‘mixed’ so at times he does look a little dusky. I don’t think I’m completely used to it yet cause he does get quite pale/flushed sometimes… However, his little heart has been doing amazing so far and he’s stable. The doctors, surgeons and nurses are happy with his progress.
Today, Hudson started to take full feeds (60ml) by bottle only! He has usually been feeding a small amount 10-15ml usually and sometimes the occasional 25-30ml. But today he went superman and started to take the full bottle for all his feeds today and snacked on a 30ml in between. Yah! Tonight I think we’re just going to see if he wakes to ask for food and then feed him that way. Hopefully, he does this often enough that he gains weight tonight.
Tomorrow we go to see the pediatrician for the first time… We have to be choosy about this person because he/she will be the one that will follow Hudson the closest on his progress and we want them to have dealt with babies with a congenital heart defect (CHD), preferably HLHS but unlikely since it is still a rare 2/10000 chance of a baby born with this CHD.
We love him being home and one day be able to share the journey with him and how many of you have been following him. Since Gabby and I have started this blog about 1.5months ago, we are completely amazed that there have been close to 4000 visits on our blog. We’d love to let Hudson know who’s been following him and praying for him one day so if you are reading this, do share a hello in a comment here so we can share them with him one day!
It has been 4 days since Hudson came home and it’s so great having him home, but at the same time it’s soooo busy.
I am exhausted beyond belief. I am not even sure how I found the energy to type this post but felt like I needed to document how I am feeling. Overwhelmed is an appropriate word to say the least. Having 3 kids aged 3 and under is tough regardless, but having one that needs extra care is even tougher. I mean they are all soo young and they all need a lot of care and attention but my time has never been so precious and so not enough, to do all that needs to get done. Hudson has to be fed every 3hrs by NG tube and in between those times I try to breatfeed him when he will take it, but he does get tired a lot which is the need for the NG tube right now to get food in him without him having too work so hard because simple things like sucking, swallowing and breathing take up a lot of his energy and tires him right out. So we are busy boiling bottles and mixing up formula for extra calories and we have run out of breastmilk that I had pumped for the first 3 weeks. I am still waiting for a pump to continue that, but I don’t miss it. I rather just breastfeed him instead of pumping UGHH!! Anyways Hayden is an alarm clock, he is up between 6:30 and 7:00a.m and likes to come into our room and wants to play trains and because we are both so exhausted being up all night getting feeds ready and trying to get the last little bit of sleep, he likes to wake up his sister so she can play with him and she’s not ready to wake up. Sometimes he doesn’t do it intentionally he is just loud and that wakes her up. Well to say the least they need a lot of attention as well and I feel so bad because I can hardly give them any quality time. I feel like all I can give them is the essentials such as food that’s relatively on time and just making sure they are fed with somewhat healthy food.
I have to also keep on top of Hudson getting his medications twice a days, he also needs to get an injection on his little leg twice a day which Ia m still nervous about. It’s his blood thinner drug, can’t wait until he no longer needs that one UGHH!! he is a champ though, he never cries when we poke him every morning and night 🙁 I think I cry more than he ever has.
Laundry has been crazy overwhelming too since Hudson spits up a lot of his food, his tummy is just getting use to having food in it and sometimes he spits it all out, not all the time, but lately it seems like a lot.
I am so grateful my family has been above and beyond supportive. My Mom and Dad come and take the kids out to the park and for walks which I am so thankful for because I just can’t right now and they so badly need to get outside. they have so much build up energy being inside. They are both very energetic kids so they need to burn some steam outside.
Soon I should be able to enjoy the nice weather and summer is here and I can take them for walks with Hudson. Right now we are trying to be extra cautious with him because he already caught a cold from the other two kids and for him it’s so hard to fight it because of his little heart taking up all his energy.
As I sit down to type this, he is sitting in his bassinet beside me and having his 60ml of milk through his NG and he likes to poop when he eats and this kid knows how to poop lots, like 10 poopy diapers yesterday alone CRAZY!!! We are going to go broke on diapers alone. I forgot how much they poop when they are this little.
Anyways, the poopy diaper calls, that’s it for now.
It’s Friday May 21st and we are coming home, soon, the time was suppose to be at 11:00a.m but it’s now 2:30 and we are still here, just waiting for discharge papers and prescription drugs UGHH!! but we should be making it home sometime today.
……….
Hudson’s Journal Entry
Hudson Jeremiah Torrens is finally coming home. It has been 5 weeks since you were born and 4 weeks since your first of 3 operations. You have done amazing, my little miracle and we all know you will continue to thrive and surprise everyone on your journey.
You are going home weighing 3340grams or 7lb 4oz and no need for any oxygen, besides room air and you have done well breathing on your own since you were extubated. Your saturation levels on average are between 85 to 90’s
You are coming home with the following prescribed drugs:
Metoprolol: which helps with the SVT’s (arrhythmias) and and strengthens the heart by not allowing it to work too hard.
Enoxaparin: this is a blood thinner drug to help with any blood clotting due to narrow aortic arch and with the sano shunt.
Ranitidine: this is a reflux antacid like Tums
Lasix: this is a diuretic that helps with fluid levels
Vitamin D: aka Sunshine!
Iron: to help with hemoglobin levels
So right now we are just waiting for the prescriptions to be filled and we should be on our way. We are very excited to bring you home but at the same time nervous because there is lots to remember and a lot to look out for now that we will be your nurse and doctor. I am sure we will be ok, but I am still nervous.
I thank God for how far he has gotten us through this journey relatively smoothly. I mean no surgery like this is ever a piece of cake, but you have done remarkably with your progress in recovering and feeding. We expected to be in Edmonton a minimum 2 months and approx another month here at BC Childrens, but God has been great and has answered all of our prayers and we have only been in hospital for 5 weeks which is amazing for such an extensive invasive surgery.
We are still bringing you home with the NG tube but that is Ok, you’re slowly taking more and more every time from the bottle and your also breastfeeding so that alone is awesome.
Today is one week exactly since we left Edmonton and I am sitting here at BC Children’s Hospital watching my little angel sleep, he is so cute I just want to lie beside him and cuddle all day. He looks so peaceful and super adorable. Sometimes he opens half of one eye to see if I am still here I think and then closes it HE! HE I love it.
He continues to thrive and is up on his feeds, he gained a fair amount of weight today so the Dr’s are happy with the progress of feedings and have ordered to speed up his bolus feeds, so now instead of feeding 60ml over 2hrs, it’s 60ml over 1.5hrs and he gets to be breastfeed in between. They have thickened up his feeds, added some SLF (Similac Lactose-Free) to the breastmilk he is getting through the NG tube. He has had two episodes of spitting up and that’s important in his case because most of these kids have bad gag reflex and spit everything up. I mean so far it’s only been twice since he’s been feeding for over a week now, so that’s not bad. I think it’s his meds that are making him nauseas specially the sedative (Ativan) but he should be off that one by the end of today YEAY!! One less drug, so happy when they take something out. He could also be spitting up because of the SLF.. He hasn’t spit up anything until he started getting this stuff.
This song was sent to me soon after we found out about Hudson’s heart condition which was at around 20weeks of being pregnant. A friend of ours emailed it to Chris and I and told us that this song was written for two parents that had a baby with Hypoplastic Left Heart. When I first played the video it was very emotional just to listen to the story of their boy and found it very encouraging also because he is now 8yrs old living with Hypoplastic Left Heart. It made me feel like we had lots of hope for our unborn baby at the time.
Lately I had another friend email me about this story and tells me how this song has touched her life, and ever since all I hear on the radio is this song and all I find myself is humming the lyrics to this song.
I especially love the part that say’s the following:
“Would you dare would you dare to believe
That you still have a reason to sing
Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming”
I think about now how Hudson is almost 1month old and has already undergone one of the most extensive if not the most extensive heart surgery to exist and has pulled through it amazingly and how he had to endure a physical pain and for us is more of an emotional pain or emotional rollercoaster, yet from the moment I saw my little angel the joy of being his mommy is so overwhelming that the pain is no longer there, that we are getting through all of this because God gives us the strength and is showing us that yes he’s gone through a lot of physical pain but the reward is grand, life is just so much better with our newest addition. We don’t have him home yet but soon we will and all that emotional rollercoaster will be nothing in comparison to the joy Hudson brings to our hearts. To hold my little man makes life so simple and wonderful and cozy.
I sometimes find myself thinking back when I first found out about this pregnancy and how I felt not ready for it and how I had a hard time accepting this gift God was trying to give me. I realize now that even though it was a tough time, it was above and beyond worth having aches and pains through the pregnancy.
Every time I hold my precious little miracle I am so forever thankful that God didn’t give up on me and made me realize that he was giving me a precious gift and that he will only want whats best for us and he has greater plans, as Jerimiah 29:11 “… … Plans to prosper you and not to harm you, plans to give you hope and a future”
I see how amazing Hudson is doing in his recoery process and I am forever grateful.
I have been able to already start to breastfeed for about 3 days and that is going over really well which are answers to our prayers. They have also started feeding him through an NG tube which goes to his stomach instead of the NJ tube that goes directly to his small intestine (bypassing the stomach). So far what they are concerned about is him gaining weight and plumping him up for his next surgery. On top of getting his feeds through the tube he is also being breastfeed which I am happy about, he’s still getting breast milk through the tube. If they have to supplement him with formula they will, but so far so good. Today they are going to start to bolus feed him which instead of the continuous feed he has been getting every hour, they will give him the same amount he would normally get in 3hrs continuous over a 2hr period and rest for an hour… and hopefully he continues to tolerate his feedings, which will make us be a step closer to being home. We will be trained on how to give him his medications and also be taking the CPR class for infants.
I am so grateful that I have been given the gift to be a parent of three amazing kids. This journey has been amazing and will continue to be more phenomenal on the outcome of things. I know it’s not even close to being over or will it ever be over. So far I’ve learned great things, the main one being that LOVE can get you through so much confusion and hurt and reward you tremendously. So I will continue to dare to believe that all things that cause us hurt will only make us stronger and bring joy that’s unimaginable. I am actually thankful for this challenge time in our lifes.
Do you wonder why you have to
Feel the things that hurt you?
If there’s a God who loves you
Where is He now?
Or maybe there are things you can’t see
And all those things are happening
To bring a better ending
Someday, somehow you’ll see, you’ll see
Would you dare, would you dare to believe
That you still have a reason to sing?
‘Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
So hold on, you gotta wait for the light
Press on and just fight the good fight
‘Cause the pain that you’ve been feeling
It’s just the dark before the morning
My friend, you know how this all ends
And you know where you’re going
You just don’t know how you’ll get there
So say a prayer
And hold on
‘Cause there’s good for those who love God
But life is not a snapshot
It might take a little time, but you’ll see the bigger picture
Would you dare, would you dare to believe
That you still have a reason to sing?
‘Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
So hold on, you gotta wait for the light
Press on and just fight the good fight
‘Cause the pain that you’ve been feeling
It’s just the dark before the morning
Yeah, yeah, before the morning
Yeah, yeah
Once you feel the weight of glory
All your pain will fade to memory
Once you feel the weight of glory
All your pain will fade to memory, memory, memory, yeah
Would you dare, would you dare to believe
That you still got a reason to sing?
‘Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
Would you dare, would you dare to believe
That you still got a reason to sing?
‘Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
Come on, you gotta wait for the light
Press on and just fight the good fight
‘Cause the pain that you’ve been feeling
It’s just the hurt before the healing
Oh, the pain that you’ve been feeling
It’s just the dark before the morning
Yeah, yeah, before the morning
Yeah, yeah, before the morning
Saturday night we all packed up the room and cleaned up a bit then took the kids to Stars On Ice. Ronald McDonald House had free tickets so we decided to tall take a night out. On Sunday morning after packing up the kids to go with their grandma and “tia” (aunt) on Sunday at Edmonton International Airport at 9am, I rushed back to the hospital because Gabby was told around 930am that Hudson was scheduled to take the air ambulance back to BC at 10:30am. Well I got there at 9:45 and then the next update was that they were held up anyways and didn’t show up until 1:30pm. Gabby spent time holding him before they loaded him up in the transport unit. BC Infant Paramedics were great and I watched Gabby and Hudson leave in the ambulance to the Municipal Airport. I soon realized I was the only one left in Edmonton, AB and I had a long drive ahead of me. I went back to the RMH and finished stuffing the 4Runner with our stuff. Good thing nobody was with me because there was no room! I went back to do some last minute cleaning and it was already 430pm and I hadn’t eaten anything yet except for some toast in the morning. I went down and there was a group cooking a special “Mother’s Day” meal so I stayed for dinner. After I was exhausted and talked to Gabby briefly and said I was going to have a quick nap and then probably drive for a few hours so I didn’t have such a long day on Monday to drive back…. well I ended up napping for 11 hours! Woke up at 630am in the morning with my contacts glued to my eyes and breath smelling like Mothers Day Dinner. haha! Of course everything was packed in the car so I had to feel my way down to the vehicle and search for the contact lens solution and the SOS pad for my mouth. I met with the House Rep and I was on my way around 7:45am. I stopped by 7-Eleven for the all important NOS and stopped by Timmies for a breakfast sandwich. I was home by 5:30pm just in time to meet Gabby and family. We unloaded the truck and chatted briefly then put the kids to sleep and “Tia” stayed over to watch the kids while Gabby and her mom & I went to visit Hudson in PICU at BC Children’s. He’s doing great! All he has is an NJ tube (nasojejunal tube – used for feeding directly to his small intestine bypassing the stomach. Probably soon changed to an NG (nasogastric) tube – used for feeding to his stomach) and an oxygen saturation sensor…. FINALLY got rid of most of those tubes and wires! He also got his sutures out and everything looks good! Also, BC Children’s does things a little different than Stollery and Hudson is now up to full feeds+ from mom!
We’re off to get him moved to the ward tomorrow morning (ie. progress!) and talk with the team. Well the quick update turned into something longer… I need to rest!
Well today was probably the most eventful of all so far. Gabby got her best Mother’s Day gift ever… She gets to fly back to Vancouver and be around ‘home’ with Hudson. Something she really wanted and it happened 🙂 I guess I cut it close on the poll answers! We weren’t expecting to go back so soon! Nobody guessed the 9th including myself though! 😀
Last minute yesterday they said we would probably be able to go to BC Children’s today or tomorrow. It turns out it was “11am” today. So we quickly arranged from my mom and Adriana to take Hayden and Hayley back on a flight back to Abbotsford this morning at 10am. They arrived safely without any “incidents” with the kids haha. I saw Gabby and Hudson off from the hospital leaving in the ambulance in the care of the 2 BC paramedics, George and Bob. I’m left here now, I just finished packing most of the stuff into the truck and it’s quite full. Just need to pack up this computer, check out of the Ronald McDonald House and away I go…. It’s 3pm and I have about a 12hr drive ahead of me. Deciding where I should stop off for the night as I’m already a little tired… We’ll see! Thank you all for your prayers and we’ll see our “Vancouver” family back in BC where a the adventure continues. We still have a long road ahead of us.
Canada celebrates National Nursing Week May 10-16, 2010 while our American friends celebrate National Nurses Week May 06-12, 2010.
Before we came to Edmonton, AB we mainly heard about the great surgeons here… But we have to say that there is a lot more that goes on than just the surgery! The nurses here are awesome and they are very informative and personable. Without their personal touch and care with our little Hudson, we don’t know where we’d be!
Gabby is at the hospital this morning with Adriana and the kids. Hayley needed to go to her scheduled war wound check up which is down the hall from NICU. It sounds like Hudson had a good night and his oxygen saturation has been in the 80%-90% for a while now! Amazing! And it sounds like they will start weening him off the Midazolam now and see how he does. He’s been a little irritable when handled but we’re hoping and praying that will pass soon as well! Gabby and I have been enjoying being able to hold him for periods of time but we’re trying hard not to disturb him for now. He was moved to the 3rd row in NICU from the 1st which is also a good sign he’s progressing. His throat of course is still a bit raspy as he gets his voice back after being intubated for so long. When he was intubated we could see him cry like any normal baby but no sound! (Yes, I had many thoughts of how I could make use of this newly found technique! haha!… ie. Facebook status of intubating my whiny kids).
A quick update. This morning during rounds, they said Hudson is going to stop getting Morphine pumped into him. Yay! Also, they pulled the pacer wires out and he seems to be doing well.
He did have a couple episodes of de-sat’ing last night (his oxygen saturation in his blood is less than optimal… In you or I, our oxygen saturation is close to 100% but because of his plumbing he will be around the 65% +. He dropped to the high-50’s a few times last night so please pray this is just a small bump in his road to recovery and his sats will increase over the next while as he adjusts. His stomach is retracting a bit (pulling-in/working harder) while he’s breathing so they are keeping a good eye on his progress.
Gabby and I can’t say enough good things about the staff at NICU and how great they are. We definitely are in the right place. They’ve taken such good care of him it’s almost going to be hard to leave!
There is also talk of him going up to “4C” which is a floor above us and the care is 1 nurse/2 babies but they won’t allow Hudson to go up while he’s on Midazolam (so lets get him off that! haha!). they will ween him off Midaz after they see how he tolerates not getting any Morphine today… He does seem to tolerate Tylenol pretty good though.
The day has finally come, almost 2 weeks after his surgery and we are able to finally hold a baby instead of a load of tubes. It was a very rough day for Hudson since he got his wire test completed which was a brutal test that can’t feel good. They were basically trying to determine where his arrhythmias were coming from. So basically what this test did was jump start his little tiny heart to 200 beats per minute to see if he would have an arrhythmia and where it was coming from. Anyways it was horrible to watch and they couldn’t finish it fast enough, I hated watching it and because he was still intubated, when he cries there is no sound but his face is completely red and his mouth is open, it’s horrible to watch that. Anyways the test only lasted 10min but it felt like forever. Once it was complete they gave us results and it turns out he has an extra conductor on the outer right side of his heart between his atrium and ventricle. Chris still has a few questions about it though, he thinks the test may be flawed and the results are more inconclusive and their recommendation is more a precaution. Chris and I left soon after because Chris had to start work and Hudson was stable enough.
We came back to see him again at around 4:30 and were pleasantly relieved to see he no longer was on the ventilator and his arterial line was out as well and he was finally breathing on his own YEAY!!! finally. Of course I had to ask to hold him and it was great, I couldn’t wait any longer to hold my little angel. Finally he is in my arms. He was a little bit fuzzy but it’s been a rough day for him. I held him for about 1hr 30min and Chris wanted a turn so I let him HE!! I just wanted to squish him and cuddle forever, it was soo nice. I can’t wait until tomorrow after he has rested and I am able to hold him again. I am so thankful and so happy, it finally feels like we are moving forward. Thank you God for that, thank you.
The day starts off as usual with the exception that Chris is due to be back at work for 4hrs in the morning. We have managed to arrange something with his Mom and my sister and helping with the two kids while I go see Hudson first thing in the morning. Chris drops me off at the hospital at around 9:00ish and he comes back to work at the house.
Well as I sit at Hudson bedside a nurse comes up to me and say’s, your husband Chris is on the phone. This was at around 12:00p.m. I get on the phone and Chris is totally calm, he say’s I need you to come downstairs to the emergency because Hayley is there. I ask what do you mean? Is she ok? he doens’t answer that question, he just said, come down to emergency. So I hang up the phone and leave Hudsons bedside and walk down the stairs to emergency. As soon as I get there, they knew who I was (Hayley’s mom) she was screaming and I could hear her, once I get in the room she is already straped to an IV pole and has no clothes on just wrapped in a white blanket. I quickly go to see her because she wants mommy. I still don’t know what had happened and my sister is crying and finally both her and Chris start telling me that while Age was trying to take Hayley out for a walk, while she was trying to put the stroller together, Hayley somehow put her hands in it and got clamped somehow in it. Age say’s that as soon as she saw her finger she knew she had to rush her to emergency, so luckily Chris was in the room upstairs and Age comes with a screaming Hayley and a frantic Age saying that Hayley needs to be taken to Emergency, so Chris hangs up the phone with work and they rush her to the hospital.
Once I got there, she calmed down and of course having Morphine helped her to become calm and kept telling me she got an ouchy on her finger. Age and Chris didn’t want me to see it because they knew I would be impacted too much by it since apprantly the tip of her middle finger was about 80% off and just hanging there. Chris dosn’t get upset about stuff like that but he said it was pretty disturbing to see, and Age being a nurse was pretty distraught by it, so I knew that it must really be bad.
So finally the Plastic Surgeon comes in to sew her little finger back up and of course they woulnd’t let me be in the room, but I was right outside and she did so good, they only froze her finger to sew it, thankfully she didn’t need sedation. So were in the emergency for about 5hrs. Once everything was done we headed upstairs to see Hudson and were only they for a bit and took Hayley back to house to get some rest.
So to say the least it was quite an eventful day and we survived it, somehow I didn’t have a breakdown and was calm for such a challenging day. The next day Hayley wakes up as normal and starts to show of her wrapped up finger and is playing and running around like nothing has happened. AMAZING!!! she’s a tough little cookie, I am so proud of her. I know God is helping us through all of these amazing tests, we are doing good, all we can do is laugh about it already and know that the kids will have good stories in their history books HE!!
I am thankful she will regain the ability to move her finger and Hudson was having a stable day and Hayden finally is back to normal and no longer having diarrhea and vomiting.
I started this last Sunday but haven’t finished it until today…. So it’s the end of the week and a lot of things happened and still a lot more things to happen. Hayley was sick for a bit, then Hayden got sick, then I got sick. Hayden is still feeling ill in his stomach after 5 days which is concerning. His appetite hasn’t come back completely and I was brushing his teeth tonight and he’d suddenly get what i thought would be sharp pains in his stomach cause he’d just instantly cry that his stomach hurts… but only for seconds…. odd. Doctor at the clinic said it is probably a virus.
Today, Gabby and I went to the Southgate Alliance Church with Hayden, Hayley, my mom and my sister-in-law Adriana (“Age” for short, but she doesn’t like it). This is the second week we’ve gone and it was a good place to make our church home since we were going to be here a couple months. Last week the youth did the service and today “Music was the Service” all based on Psalm 23. Both great services.
At NICU today, Gabby and I stopped by around 12:30pm and our friends Jairo and Carolina from Hudson’s Hope came to visit us. Interesting name of the place they live?! They stopped by to say hello to Hudson and stopped by the Ronald McDonald House for some food we cooked up. It was good to see them! Hudson had a good night the last night and all today. His dependency on the ventilator is slowly disappearing. When we left at 5pm MDT today, his oxygen saturation (aka “sats”) was around 80% with the ventilator supplying oxygen at a concentration of 23%! Room air is 21% oxygen so he’s getting close! His sats are at a comfortable level the doctors and nurses want him at which is above 70%. He opened his eyes today for almost an hour and he looked comfortable… probably because they doubled the dose of the sedation drug Medazolam which we weren’t too happy about… but it was a tradeoff to start getting him off the Morphine so we were happy about that and it made sense. They dropped his Morphine levels to a third of the dose he was getting and he seemed good with it.
I’ve been looking forward to seeing him drop the ventilator and start breathing on his own. It’s the weirdest thing when the infants are intubated their vocal chords are blocked and they don’t make a sound! HMMMMMmm… Now when my kids whine, I threaten to intubate them. haha I’m sure Gabby has more updates coming soon so until then 🙂
Well, it’s been a tough week to say the least. Hudson has a pattern of having one really good day and the next day not so great. I guess we are expecting so much from him and want him well and ready to go home soon, but after all he’s had major open heart surgery one of the most serious surgeries and critical that’s ever been done to a human heart. I still haven’t been able to see his scar because it’s still covered and I might get really emotional when I do see it for the first time. i want to see it but at the same time I am scared to see it. Today was a tough day when I saw him this morning/afternoon. He got upset and started crying and his face turned bright red, but there was no sound and the reason there is no sound is he is still intubated so that blocks his vocal cords. I have never been so sad and I just wanted to grab him and hold him to try and comfort him but I couldn’t and the nurse and RT (respiratory therapist) came to try and comfort him and adjust his oxygen levels. It was almost traumatic seeing him so upset, they are slowly weening him off morphine and a drug called midazolam which is a sedative so they think he’s starting to feel uncomfortable and apparently every time they try to move him to his left side he gets really upset and his blood pressure drops and oxygen levels go low and heart rate also drops. They did an echo yesterday but they say they weren’t able to see much but they think that his left pulmonary artery is small and not allowing enough flow to the left lung. We will know more information on this hopefully tomorrow or by Monday.
I still haven’t been able to hold my little baby since he’s surgery last Thursday, It makes me so sad just to come to see him and not being able to hold him at all. Chris hasn’t been able to see him for the past two days because he’s been sick (probably from Hayden). I am usually with him from 10:00a.m to about 3:00-4:00p.m and come home to be with the other two kids and put them to sleep and after the two monkeys are fast asleep I go back to see him again. It’s been a rough 3 days though since Hayden has had some brutal bug, well we think he over ate some candy that he was given by some other kids and made him extremely sick, throwing up all night and diarrhea. So in between pumping milk and cleaning up throw up and diarrhea can’t say it’s been fun times. My mom also left yesterday back to Vancouver and even though my sister and mother in law are a great help, I still miss my Mom. So because Hayden has been sick for the past 3 days he doesn’t really want anyone else to be around him unless it’s Mommy and that’s super hard since I feel like I have to also check up on Hudson during the day, yet Hayden needs me because he’s sick and cries every time I leave him. Such a delicate balance and can only pray that this will pass fast and he will be back to normal and Chris will get better and we can take turns doing stuff.
I decided to take small break to type this since the kids went to bed early and at the same time which has been very rare. Now I am off to see Hudson with my sister and drop Chris’s mom off at her friends house. Chris will stay with the kids while they sleep. Hopefully tomorrow is a brighter day, I am sure it will be.
Thank you all for your prayers! A few of our friends, family and church family have asked what they could pray for specifically. As most know, Hudson has been moved from Pediatric ICU (PICU) for critical care to Neonatal ICU (NICU) infant care yesterday around 1pm MDT which is a step in the right direction!
Prayer Request
Answered
Hudson had a few arrhythmia’s (irregular heartbeat) last Monday morning at 915am MDT that caused his blood pressure to drop. Please pray it was just irritation from surgery and that he will not need drugs to control it if it’s not due to irritation from the operation
Please pray the arrhythmia’s do not cause harm to his body, especially his brain
Please pray the pacemaker test they plan on doing reveals the arrythmia’s were due to irritation from the operation
Please pray the pacemaker test does not cause him to have another potentially dangerous arrhythmia called Supraventricular Tachycaria (aka SVT). His heartrate went up to 220+ beats per minute
May 5, 2010
Please pray he continues to be free from infections
Please pray he can stop the drug Esmolol that is used to keep arrhythmia’s under control. It’s being used as a precaution
May 13, 2010
Please pray he can stop the drug Milrinone that is used to keep his heart function stronger and that his heart is strong enough without it
Apr 28, 2010
Please pray he doesn’t need to have the drug Epinephrine (adrenaline) again to bring up his blood pressure
May 5, 2010
Please pray he is able to get off the ventillator and breathe room air again. His oxygen saturation levels (aka sats) are on the low end of normal without it providing a higher concentration of oxygen (65%) than in room air (21%). Normally, sats are at or close to 100% in you or I breathing room air but his are between 67% and 80% right now.
Mondays… This morning at around 915am MDT Hudson had a few heart arrhythmia’s and his blood pressure dropped. This happened about 30minutes after they pulled one of the many lines from him.. It was planned to pull the LA (lateral arterial) line this morning but I guess Hudson’s little body just didn’t like it. Now he’s on a couple new drugs which doesn’t make me happy. First one is esmolol which is a drug that basically slows the heart down a bit and also considered an antiarrhythmic… He’s also still on epinephrine which doesnt make sense because the esmolol is going to counter the effects of it (??). The second is midazolam which was given to him as a sedative. The pacemaker kicked in and got him back on track. He was about to go into NICU today but this will probably delay the move for a day. Gabby and I are a little disappointed and anxious about getting him into the NICU so we can hold our little man. I did visit Hudson last night around 10pm till about 1145pm and he was doing very well. We pray this is just a minor setback and that Hudson’s strength gets him through this quickly.
Hudson’s chest was finally closed because he’s dry and is no longer retaining the fluids from having surgery.
Really, it has only been 3 days since he had surgery, but both Chris and I were just impatient and eager to have his chest closed because it’s just one step closer to recovery and being able to hold him again. Also we are just relieved because when the chest is open it’s easier to catch an infection, but thankfully that won’t happen. So this was all done in the morning while we were at Southgate Alliance Church, we new it would be done in morning and they close the unit down to perform the procedure, so once church was over we headed to Stollery Hospital to see him. We managed to find an Alliance church close by and we were happy to be there, it was very much like our home church. It amazes me how this entire experience is bringing so many people together and it’s all God’s work really. They have a nursery for the little kids, so I decided to try and take Hayley down to play during the service and as it turns out the lady watching the kids in the nursery is a cardiologist and part of the team at Stollery and I started talking to her and told her how we had come to the church and why we were in Edmonton. Once I told her Hudson’s name she immediately knew who he was and that she had been following his echo scans when he gets them done. I mean WOW!!! Isn’t that totally God.
So once we got to see Hudson, he was starting to wake up a little bit and I started to talk to him and he started to wake up more and his eyes were wide open, couldn’t believe it, he is totally drugged up which breaks my heart really but he needs to be since he’s had major surgery. I was soo amazed at him trying to look around and stuff. The nurse had to up the dosage of morphine a bit to make him sleepy again. UGHH!!! I just want to hold my little guy, I try so hard to overlook all the machines, wires and tubes attached to him and just keep telling myself it’s only for a few more days and I will hold him again. When he was looking at me, my heart was melting, it’s like he wanted me to pick him up and hold him or maybe it’s just me wanting that so badly to comfort him and take away any pain he could be feeling, even though they reassure me he feels no pain at all.
I try so hard not to cry when I am in there to see him, but sometimes it’s so overwhelming. I don’t want to accidentally drop a tear on him. Soon my little brave boy, I will hold you and soon we will go home and soon we will go for walks and soon we will cuddle for nap times and soon you will be running around with Hayden and Hayley and they will protect you, they love you so much and cant’ wait to have you home. Hayden has already said he wants to share a room with you and play trains all day and Hayley, well she’ll probably want to put shoes on you all day, your sister is very girly when it comes to shoes. Daddy can’t wait to feed you a bottle and he wants all three of you to jump on him in the mornings to wake him up. We both can’t wait to be able to show you off and dedicate you in front of all our friends and family and show everyone how God has sustained us and blessed us immensely!
For Hudson’s first operation (Norwood w/ Sano shunt), he had his ribs cut from his breastbone/sternum so they could operate on his little walnut-sized heart. After the operation, they leave his chest ‘open’ and just sew the skin over top for a few days until the swelling goes down so his “newly re-plumbed” heart doesn’t have a hard time pumping during the first 48 hours. With just the skin sewn over top, you can actually see his little heart beating underneath. It’s amazing how little man is adjusting to everything and how strong of a fighter he is. He’s doing exceptionally well and the doctor says “his heart is beating nicely”. The risks during the time of ‘open chest’ is infection and bleeding which he has had neither. Please continue to pray that God continues to shield him from infection and any bleeding overnight so that his little chest can be wired back together with titanium and he can go back to NICU a couple days after. Hudson “titanium” Torrens will be the next man of steel! Coming Soon!
The day started early, woke up at 4:30 a.m. after not sleeping much, just thinking about his surgery and if it was really going to happen or was it going to be cancelled last minute due to other priority surgeries. His surgery was scheduled for 7:30a.m, therefore, I wanted to hold him before he went into surgery for a big chunk of the day. So my goal was to be at hospital by 5:30-6:00a.m.
Chris, his mom and my mom and myself prayed before Chris and I left to the hospital and that helped me out to start the day and take the time to do some last minute cuddles with him before of surgery since I knew I wasn’t going to be able to hold him for at least a couple of days, which breaks my heart, because all I want to do is hold him and comfort him. Anyways I was glad to have held him for almost 2hrs before his surgery, it was sooo nice to just cuddle up with him for that time. Once 7:30 came around it was time to give him up and that was when it got really hard, I didn’t want to give up my baby boy, I wanted to hold him forever, I didn’t want anyone taking my baby from my arms.
Well I had to eventually give him up and we saw him be wheeled off into the OR and that was the hardest thing to have to go through, nothing I can do but to see him be wheeled of by a team of people. It was an extremely emotional moment to say the least, but I knew he was going to be ok, he is strong little guy and God was him protecting him and holding him, that’s the only thing that is getting me through all of this and it’s God giving me the strength.
We decided to come back to the house and spend time with the other two kids. It took my mind of things for a while, I mean not fully because my mind is on overload right now, there is so much to think about and images of Hudson keep popping in my mind and how small he is yet he’s about to have open heart surgery, it almost doesn’t seem right.
We played with the kids and had some food to eat and it was already time to head to the hospital to see Hudson come out of his surgery. Dr. Ross told us to be there at around noonish but surgery could go up to 1:30ish or so.
Well we go to the waiting room at about 12:30 and we thought for sure Dr. Ross will be out soon… We waited, and waited and every time a door opened our heads would turn, and nope it wasn’t him yet. Boy, why can they just tell us a later time instead of making us be early and make us wait and think a million things. Two o’clock rolls around and all of a sudden I see Dr. Ross coming out with another Dr. He looked pretty relaxed, I mean really he only just mended a 7 day olds heart WOW!!! pretty amazing how he has been gifted like that, just blows my mind how they can operate on such a small little peanut, truly a gift from God. Dr. Ross seems so nice and humble on what he does which allowed for us to put our minds at ease and be able to fully trust him with our little baby boy.
He tells us how he was very pleased with how the surgery went and how Hudson should be out within 30min. We asked if there was any issues he had with the Aorta being so small, he said that he did not and he was pleased on how things turned out but the next 24hrs are crucial for his recovery. Please continue to pray that he heals well and is able to recover fast and shows everyone how amazing he really is and how God is in all of this.
at almost 2:45p.m. we finally see him being wheeled in and all we can see is a huge bed with a ton of machinery and all of a sudden I see his little, tiny, head with all the spiky black hair and his tiny nose sticking out of this massive big bed for him. I thought how great he looked and he was wheeled into PICU and we were told we could see him in about 15-20mins.
Finally we were able to see him and that was very, very overwhelming to see him lying on this huge bed with a million machines beside him leading to some sort of wire or tube into his tiny body and there is nothing I can do, all I want to do is hold him, tha’ts all I want to do is just hold my little guy but how with all this stuff attached to him, even stroking his head is scary or his hand because I am scared to pull something off by accident. He did look relaxed, but that’s because of all the drugs he is on. He’s only 7 days old how could he even take all of this and still come out so strong. He is going to be our strength, our little ROCK and will hold all of us together. I am so very proud of him and so forever grateful to God to give me the opportunity to be his Mommy. Hudson is so special.
Hudson’s first (almost) 24 hours in PICU (Pediatric ICU) have been great. The words from the cardiac doctors are that he “is doing great and we’re not just saying that”. They are continuing to monitor his progress and expect to maybe close up his chest this weekend and by Monday or Tuesday be able to go back to NICU (Neonatal ICU). The difference between the ICUs is that the NICU usually has just infants from 0-3 months old. 2 visitors at a time in PICU and 4 in NICU. In PICU the demographic is different and there are infants to teens in this unit. It’s a lot more crowded in PICU and there is definitely a lot more equipment and monitors and various medication and specialized teams there. There is a dedicated nurse for Hudson for each 12hour shift in PICU. Both units do rounds with the ICU doctors each morning with PICU doing an additional on in the evening. During this time is when we can get an update from the doctors directly and ask any questions we like. They encourage the questions and even repeated questions which is nice. We’re looking forward to Hudson being moved back to NICU next Monday or Tuesday if things go well over the next 24 hours and is able to close his chest over the weekend. Some things they are concerned about are the bleeding (draining from operation on his chest) as well as being able to balance the bleeding and a blood thinner that is required to keep the blood from clotting in the shunt he has (Sano modification/ 9mm shunt from right ventricle to pulmonary artery) so there is a fine balance. But we’ll gladly take the bleeding vs. the clotting. Clotting means he has to go back to the operating room… Hudson continues to remain strong like we knew he would and we’re praying for a quick, safe, healthy recovery and that everything the doctors and specialists in PICU have things go as expected and planned.
It’s Apr 22/10 2pm MDT and Dr Ross came down the corridor towards us and he looked relaxed. He came up to us and said everything went well and he’s happy with the surgery. We have heard nothing but good things about Dr. Ross and you can us to that list. He is very nice and down to earth and humble and we are happy that he was the one performing the operation today.
We thank the good Lord for watching over Hudson today!
Hudson rolled by us in a large bed where he must of took up about 1% of the bed he was so small! I almost missed him on video as they wheeled him by at 2:30pm!
Doctors/surgeons certainly have a great gift from God to be able to perform operations like this to give little ones like our Hudson a fighting chance. Dr Ross had even mentioned to us that 10 years ago they were losing half the babies.. and a cardiac doctor in PICU mentioned they lost close to 100% 20 years ago…… Today, they’re success rate is over 90% thanks to them being able to perform these operations. We’re so thankful for the doctors and surgeons that have this skill/expertise.
As I type, I can’t believe that my Hudson’s little heart has a heart that has been changed……. It’s surreal to even try and capture my thoughts and emotions onto this blog. Gabby certainly has a better way of expressing feelings here. All I know is that I feel …. thankful…. and whatever emotion you can imagine I am probably feeling it right now…
Hudson will be in Pediatric ICU (PICU) for the next 2-4 days recovering… He probably won’t be able to hear/see us for at least 2 because he is quite sedated/on a paralyzing medication.
Thank you Lord for watching over Hudson and thank you for the surgeons and doctors and nurses and others involved in Hudson’s surgery today…
Hoping I can rest tonight… Hudson, i love you my boy… remain strong… STRONG!
Hudson went into the Operating Room this morning at 7:30am MDT. He was carted off in his “temporary home” around the corner from the Neonatal ICU. This first procedure is called the Norwood Procedure with Sano Modification/Shunt
Please pray that everything goes as planned and that God guides helps the surgeons hands and mind make the right decisions!
A few pictures of last hugs before being sent to the Operating Room.
It is amazing how much love you can feel for your child from the moment you find out your pregnant to the first time you see their little face, the love just intensifies and your in love forever and how you would do anything to protect this new little person placed in your arms for you to care for, for a lifetime.
I am so grateful for all my beautiful children, I am grateful that God has made a way for us and for so many people with all sorts of challenging circumstances. So grateful that God has given specific people the ability to use their hands and be able to repair/work with broken parts. I think that the healing part only God can do. It is amazing how God has also given people the knowledge and science to be able to perform incredible, specific, detailed tasks to allow for limbs and all parts of body to repair.
I am amazed at how the HEART works, just by itself, it is extremely detailed and complex, yet fascinating because of it’s complexity. Without this organ, the rest of the body wouldn’t function. That being said it is an amazing gift that God provides people with the ability to be able to repair/work with such an important part of the human body.
I thank God for the surgeons that will be performing Hudson’s operation because they are extremely talented individuals with a phenominal gift. They are the best of the best we have been told.
I have to say that I have been eager to have them schedule Hudson’s surgery, just so I know the date, but at the same time I have been told that because Hudson is so stable with everything happening to him that his surgery is not priority until he becomes 10 days old, that’s the latest they like to perform this operation. I am eager but at same time extremely nervous even though I know that it’s all in God’s hands and that he will pull through all of this, he will be a very successful surgery and the recovery will be amazing because it is all in God’s hands. At the same time I am nervous, it’s a human thing, I can’t help to be nervous and only wish that he wouldn’t have to go through this. He’s so tiny and I am finding it hard to see them operate on such a small little person. I guess like any mother if we could, we would take that pain away or in this case, I will take the need for surgery away.
He is scheduled for this coming Thursday April 22nd, 2010 at 7:30a.m. Please help us in PRAYING for this day and for strength for all of us and for HUDSON to continue to do amazing.
This morning, Gabby spoke with the nurses and it sounds like Hudson’s first surgery will be this Thursday (April 22, 2010) first thing in the morning at 7:30am MDT unless there is an emergency surgery for someone else. Hudson is still doing well, but I can definitely see he is breathing harder from his stomach area/diaphragm. I’m praying the next 3 days he remains as strong as he has been so far so he well prepared for this surgery. The 2 pediatric cardiovascular surgeons, Dr. Ross and Dr. Rebeyka are both excellent and highly recommended by the number of families that have gone through the UofA Hospital for the Norwood Procedure. We’re not sure who’ll be doing the surgery yet. We will also be praying for God to be with the surgeons and team during the surgery and the best possible outcome.
So it’s April 17th, two days after my precious little boy Hudson was born. I am now able to start writing again or perhaps just today. Time has never been so valuable as now. I only wish I was able to stay awake for 24hrs and my body be ok with that. Unfortunately, my body needs some sleep and won’t allow for me to do that.
Well two days ago I gave birth to my precious little boy Hudson Jeremiah Torrens. Now I understand why some people have a ton of kids. All the pain is truly all worth it as soon as you see their little face for the first time. I have to say that this was the most painful labour I have endured, I had to surrender to an epidural. I was so upset about that because I thought I was stronger, but man I am NOT. The oxytocin drug they use to induce labour makes contractions a nightmare, they were horrible. I have never been in sooo much pain in my life. It didn’t help that I was starving because they didn’t let me eat anything for approx. 12hrs and I had a bad headache due to lack of food, so how did I muster up strength to give birth I have no idea.
As Chris already mentioned in his birth description I was not too happy and ready to throw his laptop out the window because he just kept typing and seemed like he wasn’t aware of what kind of pain I was in… Oh maybe he didn’t type that HE! HE!
Anyways, now I am glad he was able to share with everyone the great news.
I am so thankful and I know God was in all of it that everything went really well. I went from 3cm dilated to 10cm in a matter of 30min. I got so upset when they told me I was only 3cm, I said there is NO WAY I can endure more contractions like these for another 4hrs, as devastated as I was and felt like I was going to let everyone down, mainly Chris and the baby, but I had to have some pain relief, so I asked for the epidural. So the anesthesiologist came… and getting the epidural was as horrible as the contractions. Anyways the anesthesiologist said it would take 10min to kick in and I kept telling him I still feel them and he said, well it is working, soon after he left I told the nurse, I am still feeling everything and I need to push, sure enough it was time and this is when it got interesting. They rushed me to the operating room due to the baby having complications with heart, they wanted me to deliver in the operating room where the Stollery NICU team would be ready to take baby once delivered. Well anyways two nurses rush me to the OR and it’s the wrong room, but the other one is currently busy. So they start to freak out and as they are bringing me in the room the bed I am on, breaks in half HA!! I don’t care at this point, but now it’s pretty funny, so the bed I am lying on is falling apart and the room we are in is not the right room, nonetheless it is an operating room. Well they somewhat setup and the NICU team get there just in time because Hudson wanted to come out. So pushing is no picnic and I couldn’t stop shaking and the Dr says, “if you don’t push the right way, we are going to have to get the vacuum out.” Ok so either she tried to freak me out to try and get me to be motivated to push harder, well it worked. All I remember thinking is, I don’t want his head to be cone-shaped because of the vacuum suction HA!!! So 3 more contractions after that and he was OUT!!! And INTO this world. The Dr pulled him out and right away I saw that he was a BOY!!! It was 5:41p.m , I thought wow he looks so much like Hayden when he was born. At this point Chris is by my side and he’s actually very emotional and forgets to check if the baby is a boy or a girl. I think he was overwhelmed with emotion seeing that Hudson was finally here, like he’s actually already HERE!!! I think out of all the three kids this is the only time I have seen him cry and get really emotional. I think it’s great. It’s amazing really, baby’s are all little miracles. I have to say that I was so tired, but at the same time so aware of everything. I remember with Hayley I had no drugs at all, but I was so exhausted, I kept falling asleep every time a contraction ended and when she came out, I can’t even remember I was so exhausted. Hayden was a C-section so that was different also. They are all such awesome miracles.
So this is the awesome part about all the screw ups they had in getting us to the right room to deliver and all. Well because it was the wrong room, it didn’t have a separate room to go to with baby and NICU team, therefore, the NICU team was right beside us when Hudson was born and once they took him, he still remained in the same room and I could see everything they were doing to him, so I didn’t get to miss anything, except for being the first one to hold him, but it’s ok because once they were all done attaching stuff to him, I got to hold him for about 45min which was sooo, sooo nice and I was feeling so great, I couldn’t believe I had just delivered him. I couldn’t believe how good he looked, he was so pink in color and did not look like he needed to have all those wires attached to him ☹ he looked perfectly normal.
I was ready to walk out of there and leave with Hudson to the Stollery Hospital. So it was all a blessing to have had all of that happen really. It was meant to go that way and I am grateful for that. So eventually they had to take him away from me and that was hard to give him up ☹ but I knew he was in good hands and Chris reassured me that he was in good hands and God is with him all the way. So unfortunately they weren’t going to let me walk out of there just yet, so I waited for them to take me to my room and had to wait for a Dr to discharge me from hospital and that didn’t’ happen until around 11:00 which was ok. It gave me time to get ready and to finally have something to eat. Chris was so awesome and went and got me a WHOPPER meal, so needed some yummy, greasy food HE!! A well deserved meal I must add HE!!
So while we waited to be discharged, we got a phone call from the Stollery hospital for an update. Chris took the call and once he got back to the room, he basically just told me that it was the Dr at NICU calling to let us know Hudson had arrived and they did some fetal echo’s and ultrasound and everything looked as expected, and reconfirm he has HLHS. A part of me didn’t want to hear that, I wanted to hear that there was nothing wrong with him and they were going to send him back to be with us. I know he’s still a miracle baby and great things are yet to come out of this great trial. I finally get to be discharged and leave the Royal Alexandra Hospital and head to see our Boy Hudson to Stollery Childrens Hospital. We finally headed to see him, I could hardly wait and couldn’t believe how great I felt, I mean I was tired, but considering I had just given birth 7hrs earlier I felt good, perhaps I was just excited and eager to see my boy and didn’t feel the pain or maybe just adrenalin, I don’t know, just lots of strength from God. I had never felt this good after the other two pregnancies.
Once we got to the Stollery it was around midnight and I got to see my boy once again and got to hold him for another 45min I think, it was sooo nice, he looked so perfect with the exception of all the new wires that were added to his little body. I knew what to expect and had seen many pictures of kids with IV’s and such, but it’s so much harder when it’s your own child. I mean I just wanted to pick him up and hold him, without having to ask for help with all the equipment around him. I know it’s something I will have to put up with for a little while. I am just happy I can hold him in my arms.
Eventually we had to leave him for the night, it was now 2:00a.m and I needed to get some sort of rest, not sure that I was going to because I was leaving my child behind with really strangers, even though they are nurses and dr’s still strangers.
Once we got to the room at Ronald Mcdonald house, my Mom was there with the kids and the kids of course were already sleeping, but I was so thankful my Mom was with them. Someone the kids know and love very much, I was so grateful my Mom was able to make it out to be with them as well as Chris’s mom. Grandmas are great, they spoil the kids so much though HE! I would have never been able to get away with things my kids get away with when they are with grandparents that’s for sure. Anyways we managed to get a few hours of rest until the kids woke up at 7:00a.m and I was so happy to see them.
When Hayley saw me, she wanted nothing to do with me, she wouldn’t even look my way, she wanted only to be with my Mom and absolutely nothing to do with me. I was very surprised at her reaction, never did I expect that from her at all. Obviously she knew something had changed and I hadn’t been around for an entire day for them. It made me a bit sad, but I know kids are like that and it’s ok, she has the right to feel upset or that Mommy hasn’t been around to be with her. Hayden was ok, nothing new with him, he didn’t really notice my belly wasn’t so big anymore maybe because it is still big HE!!
Well we got them ready and my mom since she’s staying with us, helped me so much with getting them ready and eating breakfast and making breakfast for all of us. I couldn’t have done it without her. Chris’s mom is staying at a friend of hers, so she didn’t get there until morning. Once everyone was ready, we headed out to see our newest addition HUDSON.
I was so excited to take the kids to see their little brother and once we got there I was amazed at how gentle and sweet they behaved while being at his bedside and Hayden talked to him and wanted to bring him home which made me teary eyed because of course I want him home. I don’t want him separated from any of us, I want all my kids together, I want to always be able to protect them from anything.
I sit here now typing away and I always get teary eyed just thinking how much I want to be with Hudson and I can’t and it’s not like I can stay with him at the hospital either, yet my other two kids need me as well. I’ve never felt so torn in my life because I just want to be two people at once, I want to be in two places at once. I want to be super Mom, I want to be able to play with my kids during the day and be able to feed them and entertain them, yet I also want to be with Hudson and snuggle with him while I can, I mean I could hold my little guy forever or any of the kids really for that matter. I just want to cry all the time, my emotions are all over the place. Every time I have to leave in the mornings to go see Hudson, I get sad because I can’t sit down and have breakfast with the other two munchkins. I get so sad when I have to leave Hudson at night time by himself. I know they are well taken care of by my Mom and Lina, but still, I miss them, I miss them because I can’t be with them like I have been able to. Hudson also needs me, he’s my little peanut that needs to be snuggled and needs physical touch from his Mommy and I am more than willing to give it.
So far it’s only been 3days since he came into our lives and so much has changed. Our days are long and I get very little sleep, next to none if feels like. Sometimes I just want to go into a corner and cry because I am so overwhelmed. God, how am I going to get through this? I want to be the best mom I can be, but how? I want to be able to balance everything from being at the Hospital if Hudson needs me to being at this house if the other two kids need me. I pray that I can be strong enough for the rougher road to come and for strength for my kids and husband. Sometimes it feels like I am all alone, yet I am not, I have lots of help but the emotions are sometimes not something anyone can help out with.
Anyways, it’s midnight now and it’s taken me 2 days to write this, don’t know if I will be able to keep it up and keep everyone posted on things. I am sure Chris will.
Hudson is now 3days 5hrs old as I write and the days are long. I’m finding that this is a lot more work than I expected. Every morning Hayden likes to wake up at 730am MDT (I guess he’s adjusted somewhat) and tell everyone it’s morning. Drawing the curtains and letting the sun shine brightly in. Yes, the weather has been pretty awesome here so far and today it was actually around 24 degrees (75 degrees for our American friends) today but it felt hotter than that. We all get up and Hayden and I have started the morning routine of going to pick up my mom about 15 minutes away. Gabby’s mom is also with us and when we get back and all have something to eat together, Gabby and I then go to the University of Alberta (Stollery Childrens Hospital) which is only about 5-7 minutes away. The walk from the parking lot to the Neonatal Intensive Care Unit (NICU) is another good 10 minute walk. We get the updates from the nurses and try to hold Hudson or caress his head for about 4 hours. Afterward, we head back to the Ronald McDonald House to relieve the grandma’s from the kids around 2’ish hoping the kids go to sleep except they seem to be losing their nap now. Every once in a while they will nap but it’s not the norm. Today, I played with Hayden in the playyard out back of the House and it was quite hot out. Hayden wanted to play frisbee so I pulled out one of the lawn chairs and played fetch with him instead haha! I showed him how to play on the monkey bars and climb the rope ladder and he catches on quickly. He had a lot of fun but the sun was making me quite sleepy. Hayden wanted to keep playing but I really needed a nap (sitting in the lawn chair is hard work!). Hayden and I went up to the room and tried to nap, but after 5minutes of him being extremely restless, he gets up and says, “I’m done napping daddy… Let’s go play frisbee”… After much debate, I haul myself up after my 5minute no-nap and we go play frisbee once again. Shortly after, we took the kids and grandmas to go see Hudson. Not the best idea since there wasn’t a nap today…. You should have seen how cranky the kids were though! hah! So we hung around until around 830pm and the kids and grandma’s got to visit Hudson. After that, Hayden and I finish up the night by going to drop grandma off at her friends and drive back along the train tracks that he loves to see. By the time the kids are all cleaned up and teeth brushed etc… It’s about 930 already and it’s the waiting-for-the-kids-to-fall-asleep game. Sometimes they fall asleep quickly which is nice, but sometimes they are stubborn and fight it hard…. Tonight was a half decent night, they fell asleep pretty quickly. 🙂
Maybe tomorrow I’ll talk more about Hudson and give an update on him, but he’s doing extremely well. He’s a little jaundice but that’s normal for infants after a couple days (I think this is usually due to the breakdown of red blood cells happening faster than his liver can process). They just need to make sure he’s not jaundice for the wrong reasons (problems with liver)
The long nights after the kids go to sleep and Gabby and I catching up on regular things at the end of the day, we are up between 11pm and 2am at times…. Then our little alarm clock starts things over again 🙂 I think these days are going to be the easy days… it’s the days after the operation and post-operative care that’s going to add to the “busy-ness”. Till the next update!
We just wanted to take a moment to thank all of you for your prayers and comments. We couldn’t possibly respond to each and every one of them but we wanted to let all of you know that we are grateful that each and every one of you is following along. We especially appreciate your comments and prayers (know that they are being answered!)!!
A video clip was posted on Facebook that I will also share here…
This is about 18 hours after Hudson was born. Gabby and I were there around 1230am in the morning visiting until about 200am. After a short nap, Gabby and I took our moms and Hayden and Hayley to see Hudson for the first time. Hayden and Hayley were very sweet with him as you’ll be able to tell in the video… Enjoy! And more updates to come….
Hudson because it just sounded like a “strong” name. We wanted our child to have strength and knew our child would be strong throughout anything!
Jeremiah because of Jeremiah 29:11 – “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future”
He weights 3140g / 6lbs 15oz born at 5:41pm MDT! YES! Gabby did awesome, my woman is tough, boys and girls!! When she was allowed to push, 6-7 contractions later Hudson and his full head of black hair were out! Since the last update she went to deliver in a few hours!
He looks a lot like Hayden when he was born with the pile of dark black hair on his head!
Hudson is off in the “Stock Transport Unit” in an ambulance with a great team now on his way to NICU at University of Alberta. The NICU team here at Royal Alexandra were great as well as all the nurses and the doctor that helped deliver!
Hudson looks AMAZING and mommy had lots of time to bond with him… about 45 minutes! More than anyone anticipated. Thank you for your prayers! He looks really good and his initial oxygen levels are at approximately 85-90% which is great! He even is pinkish vs. the bluish color we were all expecting. Everything looks good and he is stable. At NICU at Stollery they will do the echocardiogram since it is easier now that he is out.
Pictures to come!! Thank you Lord for this precious gift you have given us and thank you all for your prayers for a safe delivery and healthy mommy and stable Hudson! They were all answered!
It’s 330pm MDT. She’s “3cm”. Lots of contractions, she’s really hungry… stressed and upset… she’s trying really hard not to take any drugs because she wants to recover as fast as possible so she can go to Stollery to see baby in NICU. She’s strongly considering epidural and a little hesitant about morphine.
With Hayden she had an epidural and she had some difficulty knowing when to push and was partially why she had a C-section.
She’s really wanting an epidural now… and order forms are coming for the anesthesiologist. She’s a little upset about it but I’m telling her she’s strong and will deliver our baby perfectly! (prayer request:for Gabby to remain safe with the epidural and baby remains safe as well and a successful natural delivery!)
Nurse comments, “it won’t be long”… not sure what that means exactly……
I’m with Gabby in the Labour & Delivery Ward at Royal Alexandra Hospital…
It’s 1:30pm MDT and Gabby’s contractions are 3min apart and about 35-45s long.
Prayers for safe delivery & mom is kept safe & mom gets to bond with baby for a least a few minutes after birth depending on how he/she is doing! Hoping and praying for at least 10m.
(my typing is annoying her a bit so updates may be short!)
(she’s on a bathroom break)
A few have asked:
Gabby is delivering in the Royal Alexandra Hospital. Baby will be transported to University of Alberta Hospital (Stollery Childrens Hospital) once stabilized (and on prostaglandin). (prayer request: for safe transportation! and baby is stable!) Once mom has recovered (prayer request: for safe recovery and for natural birth and no c-section/complications) she can come to NICU at UofA Hospital. Stollery is where they will perform the first of the 3stage Norwood operation required for our baby. This will be scheduled within 3-7 days.
Dad will try to go to NICU asap and come back to get mom when she is ready.
Very thankful for the friends, family and church family we have. We could not have done anything without you all today and we just wanted to thank you for everything. A big thanks to The Kwiatkowskis, Simone, Dawn and Burl Hamm (I hope I spelled everyone names right) for helping us with the kids tonight. Burl even arranged for transportation for my mom and mom-in-law from Edmonton Int’l to The Ronald McDonald House! Wow… God has provided us with a great family. Thank you, thank you, thank you. I can’t say it enough.
Gabby is not in the Labour and Delivery ward right now but one floor down and visiting hours ended at 830 (the let the spouses stay until around 10pm), she just has an antibiotic drip with some cramping/contractions. I don’t know if I’ll sleep tonight because I’m not beside her. I would prefer being right there 🙁 I hope she gets the good rest she needs tonight even though those beds don’t look that comfortable but at least they are adjustable. Love you kiddo… The kids miss you and love you lots. Hayden stayed up waiting for me around 1030pm wanting me to be the one to put his pajamas on. Hayley is passed out. Grandmas will probably be here in 2-3 hours. phew………………………….. what a day… and it’s really only beginning.
So Chris was nice enough to share my laptop with me before I go into super intense labour. Well what a day it has been. From the fact that I couldn’t sleep last night because there simply wasn’t a simple position that was comfortable and then to the fact that my water decided to break at around 1:30am this morning. To the fact that the kids decided to wake up almost 1hr earlier than usual. To the fact that I was still leaking fluid but wasn’t feeling any major contractions besides some cramping and just being plain uncomfortable all together.
Well we had a schedule Obstetrician appt at 11:00, so that was mainly what we wanted to target to do today, so I managed to get the kids some breakfast and head to the appt. I was already feeling uncomfortable, but it’s been like that for a few months already so it seems. Chris and I were not getting along just arguing and being short with each other and the kids. I feel so horrible, especially for Hayden because he understands a lot more of whats going on and can sense the tension and the stress that’s happening, probably isn’t sure of everything but knows something is sooo different.
So we managed to make the Obstetrician appt and it turns out that my water is broken and Dr. decided I needed to go to hospital right away and get induced so the contractions come faster. Both Chris and I were not in agreement to her recommendation to get induced, just because I rather things take their course. Anyways we decided to go back to the Ronald Mcdonald house to gather some phone numbers and some things and feed the kids. I first decided to call my Mom and tell her what’s happening and asked if there was anyway she would be able to come today sometime to help us out with the kids. She said she will look into it and call me back. Once we got back to the Ronald Mcdonald House, I decided to call her back and she had already booked her flight and said would be here by 10:45p.m. that was the earliest flight she could get. I am so thankful for my Mom, being a Mom myself I know I would do anything for my kids and that is what my Mom is doing, I can’t ever be thankful enough. Both Chris and I are blessed to come from amazing parents that love us so much. Anyways, just getting emotional about how much love I feel for my family. So I managed to gather lunch for everyone and Hayden was playing in the kitchen area and once I had made lunch for everyone, I told him we had to go to hospital. He told me he had pooped in his underwear and was hiding in a corner 🙁 I felt so bad, just because I am sure he did it because he’s nervous and going throough so much. He hasn’t had any accidents at all and has been doing amazing with potty training. One less thing I needed at that moment, but Oh well. One less underwear he will have now HE! Mommy wasn’t about to wash it right then and there Sorry. My poor little monkey UGHH!! If I could take the stress or anxiety he is feeling or both my kids are feeling I would, it’s so much for them.
Anyways, we managed to head to hospital and I packed enough snacks for them, so I had thought, but they soon started to get restless and I had no idea what we were going to do with them while I got some antibiotics and an IV put on. Chris was getting short with Hayden because he was getting restless. He’s a kid, he can’t be expected to stay still for hours at a time. Oh man I just want to scream and cry at the same time. I am so stressed at this point, my poor kids. I am mad at Chris because he’s not patient enough with them and it feels like he’s not really understanding me as a Mom and what I feel for my kids and going through a million emotions. I know he’s under a lot of stress too and trying to arrange something with the kids and I am scared of who will take care of the kids. Anyways, thankfully we have an amazing church family and Chris managed to contact some friends and they were able to have someone they know from here to help us out with the kids. Chris took them and met with them at the Ronald Mcdonald House. So that is where the kids are at right now and I just called to see how they are doing and Hayden keeps asking for me 🙁 🙁 Hayley is already asleep, so one less thing to worry about 🙁 Why do mom’s worry so much, now I understand why My Mom and Chris’s Mom always want to know how we are doing, even if it’s just a phone call.
Chris has assured me that the kids are in great hands and we are thankful for a great bunch of friends and their support through this challenging time. God is with us I know that, wish sometimes we didn’t forget that and get side tracked by emotions.
I don’t think baby is coming today, but maybe in the morning. Chris has to leave at 10pm for the evening so I am alone but at least he can relieve the babysitter.. .We are so thankful for everything and everyone that has helped… I have to sign off now cause Chris has to leave….
Apparently both grandma’s made arrangements at the same time separately to come out early and ended up on the same flight tonight… and they’ve found each other at the airport. They are both on their way… Wow! The kids and us will be thrilled to see them both 🙂
It’s 730pm MDT and we’re in the Royal Alexandra Hospital waiting… I’m sitting in room 3914 (station 39) in Women’s Hospital with Gabby.
Early this morning at 130am MDT Gabby’s water broke. At the time we didn’t know or think it was her water that broke. I was frantically (but trying to keep a straight face) searching the net for information… I ended up visiting a 24hr Shopper’s Drug Mart for litmus paper or some sort of pH test to test the “water”. They didn’t have anything like that but the pharmacist looked more worried than me and said I should go to the hospital immediately. Well, when I got back, Gabby was in bed and resting and said that it seemed to stop so we thought we would wait a little bit. This morning we got up and went to our scheduled Obstetrician appointment at 11am MDT this morning and they did the test and confirmed it was her water that broke. She wasn’t having any contractions just slight cramping. So, timing wise, we had only arranged for relative(s) to come out starting tomorrow. My mom was going to fly in at 930am MDT Thursday, tomorrow. It was on my mind and Gabby was pressuring to figure out what to do with the kids and she was getting upset with me and I was getting upset with her saying I will take care of it. 🙁 We went back to the Ronald McDonald House and packed a few things and I put a note up on Facebook because I wasn’t sure what we could do with Hayden and Hayley. There was no way they could be relaxed or entertained while we were in a small room. The kids being present weren’t going to be good for Gabby either.
So then I was flooded with text messages and voice messages on my phone and facebook messages. Wow, how amazing was that God answered prayers and provided us with many options. Cindy had already arranged for 2 people on standby to come to Ronald McDonald House and watch our two kids. Gabby had arranged with her mom to come early tonight instead of later and her mom will fly into Edmonton at 10pm this evening. Then Cindy had arranged for transportation of Gabby’s mom to get to the Ronald McDonald House from the airport this evening. Wow, Cindy and Vern have been awesome in helping us. We also had some calls from Megan and Candee about extra help as well and we are so ever thankful for them being able to go out of their way to help us.
So we’re very thankful that everything is taken care of to this point and that Gabby can focus on delivering the baby safely as well as taking care of herself…(even though I know she still worries about the kids regardless). I am completely at peace knowing the children are in good hands.
A few updates while I was typing this…
7:43pm MDT – Gabby has a tight contraction. She’s slowly remembering the pain she says.
7:45pm MDT – Gabby thinks she’ll be in more pain this time cause she’s not as exhausted as she was with Hayley. I encouraged her that she is stronger this round and to ‘git ‘er done!’
7:50pm MDT – Gabby has another tight contraction… about 15sec long she guesses…
It’s 7:55pm MDT now… and going to try and relax a bit…
Gabby’s water broke (confirmed at the ObGyn office about 30 minutes ago) last night around 130am. We will have to go to the hospital today to prepare to deliver our little one. Please pray specifically for a safe delivery and mom is also safe during the delivery. She doesn’t have any contractions yet but if she doesn’t start having them by 130am she will most likely have to be induced.
We’ll be testing out new Themes just to try out a few new things. The “Greener-Side” theme is fixed width and a little restrictive. Trying out a few variable-width Themes
I can’t help but constantly think about Hypoplastic Left Heart Syndrome (HLHS) and the more I want to understand it. A lot of people ask “what is it?” and I have usually just pointed them to the wiki page although it’s sometimes really hard to just absorb the information that’s there so I thought to myself maybe I can try and explain what I’ve taken the time to try and understand. (I add this comment after getting half way though this… I think I ended up getting into too much detail! :-/ I’ve only tried to consolidate all the information I’ve been reading about into somewhat of a summary)
Firstly, it’s important to know that the baby is completely fine in the womb and that the birth will be just like any other delivery; try to deliver naturally without having a C-Section nor does mom need to be induced for any special reason.
Secondly, even thought the baby has HLHS and fine in mom’s womb, HLHS becomes a concern for baby’s health as soon as he/she is born because the baby no longer has mom to support his/her circulation. How does mom support the circulation while the baby is in the womb? The placenta transfers nutrients and oxygen from mom to the fetus transfers waste products and carbon dioxide back from baby to mom.
In the above diagrams you can see that the umbilical cord actually has 2 arteries and 1 vein. A diagram of the heart like the ones above usually has the “left” and “right” reversed for viewing. Sorry I had to include 2 but to me it was hard to visualize with just the one. The blood flow as follows:
Oxygenated blood enters the umbilical vein from the placenta
Enters ductus venosus
Passes through inferior venacava
Enters the right atrium
Enters the foramen ovale
Goes to the left atrium
Passes through left ventricle
Flows to ascending aorta to supply nourishment to the brain and upper extremeties
Enters superiorvena cava
Goes to right atrium
Enters the right ventricle
Enters pulmonary artery with some blood going to the lungs tosupply oxygen and nourishment
Flows to ductus arteriosus
Enters descending aorta (some blood going to the lower extremeties)
Enters hypogastric arteries
Goes back to the placenta
So you can see that mom is able to provide everything baby needs while in the womb through the placenta. Amazing!
Other key points to note:
The blood is mixed blood during the time the baby is in the womb.
The ductus arteriosus is open (“patent”, and often referred to as the PDA) allowing some blood flow in essence to bypass the left side of the heart completely.
The foramen ovale, an opening between the left and right atrium also allows some blood flow to bypass the left side of the heart completely.
A Hypoplastic Left Heart:
Looking at the above comparisons, even though the left side of the heart is absent/underdeveloped and with mom providing the oxygenated blood through the placenta and with the foramen ovale present and the patent (open) ductus arteriosus, I now understand why the left side of the heart isn’t really a concern in the womb…
Within minutes or up to a few days after birth, the patent (open) ductus arteriosus (PDA) as well as the foramen ovale is supposed to close as part of the normal changes occurring in the baby’s circulation.
So now that these two ‘bypass-the-left-side-of-the-heart’ openings are closing, this is when the problems begin for the HLHS baby especially with the PDA possibly closing within minutes of birth. A drug called prostaglandin is given to the baby as soon as possible when the baby is born to keep the ductus arteriosus open so the baby still has mixed blood in his/her circulatory system until the 1st stage of the 3-stage Norwood surgery can be arranged. This is usually done within 3-7 days. The Norwood 3-stage operation is not a cure for this congenital heart defect but a reconstruction of the heart so that the 2 chambers of the right side of the heart are able to do the work of 4. God has given surgeons a gift of being able to perform these operations and I did finally find and watch one of the surgeries on YouTube…….. Simply amazing.
One thing I must pray hard about is whether I should cut the umbilical cord….
I’ll write about the Norwood procedure another night, it’s already 115am here and I do have to return to work in the morning (return meaning I’ll be working remotely since I brought my PC & laptop with me but spending my time with computers instead of my family :()
On another note, the heartbeat sound I could hear last night I now know is the dryer people are using… someone just came to put a load into the dryer…
It’s Sunday night and we had an eventful day. I just remembered the time when I drove up at 9am last Friday morning to move in a load of stuff into the Ronald McDonald House. Driving up the street there were about 12 police cars including a police van and a whole bunch of officers outside (well adjacent corner to RMH). One had a shotgun out he was pointing at the ground. My first thoughts were that I was wondering what kind of neighbourhood this was and was it going to be safe? Well it’s been about a week now and I’m sitting on the third floor of the Ronald McDonald House at the end of the hallway in one of their comfy Lay-Z-Boy chairs and borrowed Gabby’s laptop. I’m pretty comfortable now. There’s no wireless internet access here, just wired internet access here so I’m glad I brought my wireless router here and installed it in our room to give some private wireless internet access to us. I needed access so I can work remotely starting this Tuesday until Gabby delivers.
At this end of the hall I can hear a constant sound that sounds like a heart beating, I don’t know what it is maybe coming from the laundry room? Its a sound like someone outside in their car with a boombox in their car but this is consistently the same sound for the past 15minutes or so now. It’s a sound more often than not that seems to occupy my thoughts these days. I think of the kids that go through the heart surgery and the recovery period they go through, and with all the access to any information these days, we can even see operations on YouTube. Gabby found one specifically for HLHS but I haven’t looked or watched it yet. I’ve mentioned to her half-jokingly a couple times that I feel like I want to be in the operating room even if it’s an all day operation.
We’ve been away from home a week now and I miss home… even more so when Hayden says at the end of the day that he wants to go home in his bed it kind of saddens me…. I think that he’s had such a great day spending almost every moment with the entire family but ends with him really missing home. It’s only been a week and I am expecting to be here at least 4-5 more after Gabby delivers (due on Apr 23). I took last week off using some vacation time, I’m happy I have vacation time banked up close to 7 weeks this year so I have the added flexibility to be with my family this time. Work has been great in supporting me through this and extends their support beyond the working relationship. It was really nice to know how supportive and how much they expressed they respected me. My worries about being away from work for an extended period of time were alleviated.
Last night we picked up a few groceries now that we have access to a fridge and cupboard space. It is still a little limited even though this place is huge. The Ronald McDonald House we’re staying at can support 30 families at once. I will try and take some pictures/video of this 3-story “house” + basement + underground parking later on this week. There are 3 quite large kitchens with double appliances. It’s rarely ever crowded in there though, I think most people eat out or maybe busy at hospitals. Throughout the week, various groups come in to cook a meal for everyone which has been awesome. Yesterday, the family enjoyed chocolate chip pancakes with ham and scrambled eggs and toast for brunch. Yum! We all had a big nap later and I woke up extra tired. Hayden had a couple cute comments (well 1 cute one to me) as he usually is a pretty sweet and gentle kid after a “sleep”. His first was telling Mom, “you have to be careful when you gets up because… because.. you don’t want the baby to fall out!”… Sitting with me while I’m laying down he says, “Daddy! your belly… it’s getting bigger” HAHA, funny boy! We all laughed (some more than others haha). I wonder if that had anything to do with me checking out the crosstrainer for 20minutes in the basement this morning. It did actually feel nice to get back on the exercise equipment after a number of years. There is a small universal weight set and an elliptical/cross trainer and whole bunch of free weights (but only to 5lbs weights? I couldn’t figure out why there were so many in the bin). Anyways, today another group came in to make dinner. This time it was spaghetti and garlic toast and roasted peppers and a fruit shake (mixed berries with yogurt and pineapple juice I was told!) I think I am going to need to work overtime the next time I get on the crosstrainer. Actually it’s 10:15pm and I’m still full?
This afternoon before we had dinner, Gabby and I went with Hayden and Hayley to a park across the street (Google StreetView isn’t cooperating. Rotate to the left) from the Ronald McDonald House (Rotate to the right to see RMH). The kids enjoyed it there and Hayden made a new friend Maya a few months older than him. Gabby and I started to talk to the parents (who adopted Maya and waited 6 years to adopt her. They are looking to adopt a second from Haiti). We started talking and as it turns out, the father is a retired General Surgeon and him and I started talking about the operations our 3rd will have to go through. In the end I think Gabby found out a church they go to as we were looking for one to make our temporary home while we were out here. They also were very nice to give us their contact information as they live nearby as well as her parents. They offered their help and to contact them whenever if there was an emergency and Gabby had gone into labour! Wow, my first thoughts were that God sure knows how to put people into our lives paths when we need them most. I always remember the verses from Philipians 4:4-9. It was from the Philipians Course we took at our church with Vern and Cindy. These verses always always help me through many times…
I find that everyone at the RMH is very pleasant to talk to when they have the moment to sit down and talk with you. Sharing each others stories many will say they will pray for our little one. Wow, they will pray for our little one… Not we will be thinking of you or our thoughts are with you, but they will pray. I know I’m sometimes cautious as to what they mean when they say they will pray but after short conversations, I find that there a number of them including surgeons, doctors, nurses go to a Pentecostal church nearby. Truly Amazing!
When I first started this post, I had 98% battery, now I’m down to 59%. Gabby is sitting beside me now and I think she wants a turn 🙂
Video Clip of 3rd Floor of RMH. (Quicktime doesn’t seem to play this file back that great on my PC, I use VLC. I also don’t have the fastest internet connection on my server so it may take a minute to download. Let me know your experience viewing it).
I am feeling extremely pregnant today and am totally doing the waddle walk, I don’t remember ever doing it with the other two pregnancies but who knows. I think that at the end of each day I am just drained even if I do very little all day and I feel like I am going to go into labour, but I’ve been feeling like that for months HE!! It just seems more real now that I am getting so close to the due date.
Chris has been an awesome help, great husband and Dad. I know the kids, especially Hayden is loving having Daddy around all the time. It will be harder next week that Chris will need to do some work. It’s weird I went from a very independent Mom of two kids and capable of running a household, to very dependent of my husband to help me out with the kids. It’s funny I joke around with Chris that I’ve never seen him hold a broom before or wipe the kitchen counters HE! HE!. We have chores at the house and clean up after ourselves in the kitchen area, so he’s been doing amazing helping me out with all that stuff and the kids just run around because there is playrooms on both sides of kitchens.
So far we have met two families and Hayden has taken a liking to a little boy name Tyrell (not sure of spelling) well this little boy is 5yrs old and has cancer/leukemia but you wouldn’t’ know it, he is soooo energetic, I thought Hayden was full of beans, but boy, this boy is non stop, so him and Hayden run around the kitchen area chasing each other and they dont’ seem to get tired. Anyways, please pray for this little boy and his family, he has two other younger sisters. It seems like he will need to have treatment until 2013.
Also pray for the little baby we met yesterday named Oksanah, she’s the baby that has same condition as our baby (HLHS), but she’s now 6months and has already undergone the two first surgeries, but for some reason she has a leaky valve and the Dr’s are saying she is to have a heart transplant instead. So she is currently on the waiting list for a new heart if I understood correctly for a few months now and nothing. So pray for her that either she can heal and not need to have a transplant or to have a donor for her. She is sooo sweet and very, very cute.
Anyways, that has been our day today, we are doing well, just missing the comforts of our home lots and all of our family and friends.
We are going to try and find a church to go to tomorrow.
Until tomorrow
Today we have settled into our temporary home at the Ronald McDonald house. We were blessed to have been able to get in 3 days earlier than expected. It’s nice to finally feel a bit more stable and settled in. We’ve managed to unpack our things and organize, which I find important in my life with two little kids. I especially wanted to have a place where the kids were settled just so my mind would be somewhat at ease when I went into labour. I would rather not go into labour soon just because we don’t have anyone to watch the kids until the 15th of April, but at least here they would understand the situation and help us out with the kids, if it came down to that. I am hoping to go into labour at night time, while kids are sleeping and Grandma Torrens, Tia Age or the Segura Grandparents can watch them and when they wake up they would see a familiar face. I think I worry about that a lot, what would happen with the kids when I go into labour? I worry about that and everything about labour, I keep remembering what the pain was like when I had Hayley and I didn’t get any drugs and had to deliver her without drugs, it hurt HE! HE! LOTS!!
Also just thinking about when the baby comes out and if I will be able to hold him/her and for how long before they take him/her away to start the prostaglandin medication to keep the patent ductus open until surgery can be scheduled. The drug somehow “tricks” the baby into thinking he/she is still in the womb.
Anyways, I am just glad we are settled in and the kids have a place to play. It will never be like Home but it’s a nice place. The house is huge, it has 30 rooms to accommodate 30 families and 6 very large kitchens with everything you can imagine for kitchen gadgets. We were assigned our our pantry space and our own fridge space and freezer. The basement of the house is full of games for the kids, it has a video arcade room and with Rock band of course, air hockey, a doll playhouse outside of the house with an outdoor playground. There is even a room full of quilts that people have made and the kids got to pick one for themselves today. It also has a weight room, which Chris say’s he will use, we shall see 😉 HE!! Even though is got all these cool things, Hayden said he wanted to go home, I think he was really tired today and wanted to be in his room 🙁 It made me sad a bit because he’s feeling all the changes and just wants to go back somewhere secure. Overall he is happy and I think he is enjoying having both Mommy and Daddy at all times.
I also got to quickly meet a Mom that is staying at the house with her little girl that is 6months old and has the exact same condition our baby (HLHS). I briefly talked to her and she and her spouse have been here for almost 6months. She had to go because baby was crying, but I am sure I will see her again tomorrow and she said she would have tons of information, her baby has already had the first and second surgeries, but might possibly need a heart transplant if I understood correctly. Hopefully I get to chat with her again and get more information.
This is her first child. It seems like most people I have met that have a child with HLHS is their first child. I have to admit it kind of worries me because I won’t only have the baby to take care of, but also my other two little one’s.
I get a bit overwhelmed on that thought and I know the real challenge hasn’t really began, not until the baby is born. I pray for lots of strength and courage and faith that everything will be Ok with our little baby and that we will be able to cope with all the demands of all 3 kids.
38 weeks today and 2 more to go. Baby is strong and kicks lots and every night I feel like I am going into labour just cause the baby decides to kick me a lot, but it’s good because I know he/she is very active and strong already.
Our fourth day in Edmonton and we got to meet the Multidisciplinary team at the Stollery Children’s Hospital, inside the University of Alberta Hospital. They are pretty much the team we will be dealing with through entire procedure of baby’s operation and stay at the hospital. We got to tour the hospital and the NICU where the baby will be before and after surgery. It was a bit hard to go in there, they only have 16 babies at a time and the few babies we got to see were sooo tiny and hooked up to sooo much machinery which is what I am sure our baby will have to go through. It was hard and I am sure it will be harder once it’s my own child in there strapped down to all those machines, I’ve seen many pictures of other kids and I know what to expect but I don’t know if it will be different once I see my own little baby.
I just hope and pray that our baby will be sooo strong and surprise the medical team and be able to feed without a feeding tube, just so we can hold him/her at least until the surgery is performed.
Anyways the day went ok and the kids behaved really well through the meeting which was so helpful. to be cont.
I’m a guy and I like to fix things… I like to study what’s wrong with something and come up with a solution… The day we found out about our child having Hypoplastic Left Heart Syndrome, surely something was overlooked and I could come up with some recommendation on how to “fix” this.
I’ve gone with Gabby to every ultrasound appointment and I remember the 20th week appointment, it seemed a little longer than usual. I remember him pointing out all the organs, the placenta, the feet, the hands, the head… but then quickly passing over the heart. The heart sound clip was short and not really showing the heart. The technician never said anything but gave us the typical black and white printout of a picture that only a mom and dad could or would be excited about yet we still share “this” picture with our friends and family. The next day Gabby got a call from our family doctor and asked us to come in. Basically, she just told us that there might be ‘something’ and they just wanted to refer her to BC Women’s Hospital to folllow-up. We went in around her 22nd or 23rd week and I remember them focusing in on the heart… I kept to myself but kept wondering, what could be wrong? I stared at the screen trying to interpret what they were looking at and listening intently to what they were saying. I could see the heart clearly and it was pumping away except it I remember having the thought of, are we only looking at one side? Usually they say something like “and there are the 4 chambers of the heart” and I remember clearly seeing 4 chambers with our other 2 children. I couldn’t this time but never really paid attention to it because I figured I probably didn’t know what I was looking at. After the 2 or 3 doctors and a student were doing the fetal echocardiogram (as it turns out this wasn’t just an ultrasound) we were asked to go to a meeting room where, if I remember correctly, we sat with a cardiologist, a social worker, a cardiac nurse and the student. It was then we were told of the condition our unborn child had. I still remember the words “Hypoplastic Left Heart Syndrome” ringing in my ear. I remember, phrases like “without intervention the baby will only live hours to a week”, “HLHS”, “Norwood”, “Heart Transplantation”. I wasn’t absorbing everything and my wife was beside me crying and I couldn’t do anything except hold her hand and listen. It was frustrating and sad at the same time… Eventually I couldn’t “stay strong” and my eyes began to well up. I tried to hold as much tears in my eyes as possible before making the motion to wipe them away. I didn’t want Gabby to see but eventually she glanced at me…. I can’t think by now and I’m staring at these scribbles the cardiologist is trying to draw in front of me using words and acronyms that he thinks I’m understanding. I’ll google this later I thought (hah!). The cardiologist asked if we had any questions and I said not really at this time, just need to absorb the news. Options that were brought up were 1) termination (which Gabby promptly interrupted and said that’s not an option. They explained that they had to present the option and good that they don’t have to discuss this further) 2) A series of 3 heart surgeries and 3) heart transplant. He left and the social worker talked to us and just calmly and as “non-doctor-terminology” as possible tried to review the issue. We talked a little about the Norwood Procedure but again I wasn’t absorbing the information. I don’t know why but I started to get a little annoyed at the student being there. This person wasn’t contributing but just observing and I thought to myself, nobody really asked us if a student could be present. I really just wanted to get out of there, it was too much for one day. We would continue the talks another day. I prayed silently to myself that God please guard our hearts and minds during this time and to not let ourselves make wrong decisions during a time of high emotion.
Gabby and I left the hospital with a package under our arm about the congenital heart defect and not really saying a word about anything that just happened. We just held each other as we walked to the truck. We drove out silently and I paid the ridiculous parking bill of $12.
After picking up something quick to eat, we finally arrived home and immediately of course, I started to google. More phrases like “fatal unless life prolonging operations” or “70% success rate”, “Norwood”, “Glenn”, “Fontan” were popping up. Again, being the guy, statistics were big for me. I was confused because a lot of information was saying 70% success for the first surgery, but i was also hearing things like 85%, 90%, 95% success from Womens. I kept doing calculations in my head, “if they keep bumping the percentage by ‘5’, I wonder how many surgeries have actually been performed? It couldn’t be that many. it was a question i would surely ask in our next meeting. I also found out that as early as 20 years ago, they just started doing these “Norwood Procedures” and long term prognosis is unknown. Also, its likely the child will need a transplant later in life and that these operations are not a cure or “fix”, but life prolonging steps. The “Norwood” would happen within the first week after birth, followed by the “Glenn” at around 6 months and the “Fontan” at 2-3 years. I wondered to myself, is this an experiment? I had serious problems with this and thought to myself of the first infants that had the first operations thinking about the doctors, “oh that first operation seems to only be good for 6months, what can we do… lets do this… but thats only good for a couple years… lets add this operation….” I was getting more and more concerned this was an experiment and even wondered if my child was going to be another experiment to “further medical science”. I then had the immediate thought of, “well even if that’s the case, maybe that’s what God intends to use our child to help another child another day? Maybe he chose us because he knew the parents we would be”.
I needed to explore the options, heart transplant, Norwood+Glenn+Fontan operations, & compassionate care. i don’t know why I never really considered heart transplantation, but it just didnt seem right to me. I still don’t know why I feel that way. Perhaps its knowing of the risks of anti-rejection medication that lowers the immune system and how hard an infants body would fight to reject the foreign organ. I couldn’t shake those thoughts nor could I shake the thought of waiting for a newborn heart with a lot of other people who were on a waiting list. I couldn’t imagine ever having to face those families who didn’t receive a heart in time. The source of the hearts are usually from infants who have suffered severe head trauma. It all just bothered me inside.
With all the statistics and opinions of various heart specialists and information given, I even considered compassionate care. I really really struggled with my child being the subject of a relatively new procedure that could easily be an experiment. A couple decades ago, it seems that compassionate care was really the only option after the child was born. Compassionate Care is the term used to just make the infant comfortable for the duration of their expected life which was typically between 2hrs and a week… I wrestled with this for a number of weeks and prayed for God’s guidance and for him to reveal what he would like us to do. I thank God to this day that medical science has allowed us to pray and have others pray for us and give us the opportunity to do what’s best. For compassionate care, I could not see myself having to go through having to bury my own child! I would always remember Gabby saying to me on occasion before any of this even happened that ‘no parent should have to bury a child of theirs’. One day I bought the book online called “Waiting With Gabriel” and I read the entire book one evening in about 6 hours. For any of you that know me that well, know that I have never read a novel/book from end to end nevermind in one night! The experiences and the emotions this person was going through were exactly mine at the stage we were currently at. When I finally got to the part of her choosing compassionate care and her experience, I couldn’t place myself there. I had to do something … After a lot of prayer for God to reveal to us what we should do, Gabby and I eventually just came to a common conclusion without too much discussion and that was to proceed with the 3 operations. Gabby and I discuss quite frequently that we don’t know where we would be today if God was not in our lives. I cannot help but think that everything that has happened to me in the last 6 years was Gods plan for me. From meeting Gabby 7 years ago and debating hardly about God, the Bible and Marriage (of course you know who won 😉 Its amazing to look back and see that me debating so hard that I dug into the bible and the truth was revealed to me in a different way!), to finally arriving at Maple Ridge Alliance Church, to taking Alpha, to inviting and accepting Jesus Christ into my life, to taking the Philippians course, to getting premarital counseling, to getting married, to submitting to all my fears of getting in front of the congregation and sharing my testimony and being obedient to be baptized , to taking the Marriage Course, and taking it again (and will again!)… all at the same time immersing myself more and more into his Word….. Where would I be today without God? I couldn’t tell you but I have a feeling I might/could have been angry, bitter, and depressed… I give all the glory to Him for getting me to where I am today. Thank you Lord!
I know I have a lot more to share and am missing a number of other moments but I did want to get started on something. I may revisit this post from time to time adding more thoughts.
Today… We are in Edmonton, Alberta awaiting the arrival of our precious gift.
I’m a guy and I like to fix things… I like to study what’s wrong with something and come up with a solution… The day we found out about our child having Hypoplastic Left Heart Syndrome, surely something was overlooked and I could come up with some recommendation on how to “fix” this.
I’ve gone with Gabby to every ultrasound appointment and I remember the 20th week appointment, it seemed a little longer than usual. I remember him pointing out all the organs, the placenta, the feet, the hands, the head… but then quickly passing over the heart. The heart sound clip was short and not really showing the heart. The technician never said anything but gave us the typical black and white printout of a picture that only a mom and dad could or would be excited about yet we still share “this” picture with our friends and family. The next day Gabby got a call from our family doctor and asked us to come in. Basically, she just told us that there might be ‘something’ and they just wanted to refer her to BC Women’s Hospital to folllow-up. We went in around her 22nd or 23rd week and I remember them focusing in on the heart… I kept to myself but kept wondering, what could be wrong? I stared at the screen trying to interpret what they were looking at and listening intently to what they were saying. I could see the heart clearly and it was pumping away except it I remember having the thought of, are we only looking at one side? Usually they say something like “and there are the 4 chambers of the heart” and I remember clearly seeing 4 chambers. I couldn’t this time but never really paid attention to it because I figured I probably didn’t know what I was looking at. After the 2 or 3 doctors and a student were doing the fetal echocardiogram (as it turns out this wasn’t just an ultrasound) we were asked to go to a meeting room where, if I remember correctly, we sat with a cardiologist, a social worker, a cardiac nurse and the student. It was then we were told of the condition our unborn child had. I still remember the words “Hypoplastic Left Heart Syndrome” ringing in my ear. I remember, phrases like “without intervention the baby will only live hours to a week”, “HLHS”, “Norwood”, “Heart Transplantation”. I wasn’t absorbing everything and my wife was beside me crying and I couldn’t do anything except hold her hand and listen. It was frustrating and sad at the same time… Eventually I couldn’t “stay strong” and my eyes began to well up. I tried to hold as much tears in my eyes as possible before making the motion to wipe them away. I didn’t want Gabby to see but eventually she glanced at me…. I can’t think by now and I’m staring at these scribbles the cardiologist is trying to draw in front of me using words and acronyms that he thinks I’m understanding. I’ll google this later I thought (hah!). The cardiologist asked if we had any questions and I said not really at this time, just need to absorb the news. Options that were brought up were 1) termination (which Gabby promptly interrupted and said that’s not an option. They explained that they had to present the option and good that they don’t have to discuss this further) 2) A series of 3 heart surgeries and 3) heart transplant. He left and the social worker talked to us and just calmly and as “non-doctor-terminology” as possible tried to review the issue. We talked a little about the Norwood Procedure but again I wasn’t absorbing the information. I don’t know why but I started to get a little annoyed at the student being there. This person wasn’t contributing but just observing and I thought to myself, nobody really asked us if a student could be present. I really just wanted to get out of there, it was too much for one day. We would continue the talks another day. I prayed silently to myself that God please guard our hearts and minds during this time and to not let ourselves make wrong decisions during a time of high emotion.
Gabby and I left the hospital with a package under our arm about the congenital heart defect and not really saying a word about anything that just happened. We just held each other as we walked to the truck. We drove out silently and I paid the ridiculous parking bill of $12.
After picking up something quick to eat, we finally arrived home and immediately of course, I started to google. More phrases like “fatal unless life prolonging operations” or “70% success rate”, “Norwood”, “Glenn”, “Fontan” were popping up. Again, being the guy, statistics were big for me. I was confused because a lot of information was saying 70% success for the first surgery, but i was also hearing things like 85%, 90%, 95% success from Womens. I kept doing calculations in my head, “if they keep bumping the percentage by ‘5’, I wonder how many surgeries have actually been performed? It couldn’t be that many. it was a question i would surely ask in our next meeting. I also found out that as early as 20 years ago, they just started doing these “Norwood Procedures” and long term prognosis is unknown. Also, its likely the child will need a transplant later in life and that these operations are not a cure or “fix”, but life prolonging steps. The “Norwood” would happen within the first week after birth, followed by the “Glenn” at around 6 months and the “Fontan” at 2-3 years. I wondered to myself, is this an experiment? I had serious problems with this and thought to myself of the first infants that had the first operations thinking about the doctors, “oh that first operation seems to only be good for 6months, what can we do… lets do this… but thats only good for a couple years… lets add this operation….” I was getting more and more concerned this was an experiment and even wondered if my child was going to be another experiment to “further medical science”. I then had the immediate thought of, “well even if that’s the case, maybe that’s what God intends to use our child to help another child another day? Maybe he chose us because he knew the parents we would be”.
I needed to explore the options, heart transplant, Norwood+Glenn+Fontan operations, & compassionate care. i don’t know why I never really considered heart transplantation, but it just didnt seem right to me. I still don’t know why I feel that way. Perhaps its knowing of the risks of anti-rejection medication that lowers the immune system and how hard an infants body would fight to reject the foreign organ. I couldn’t shake those thoughts nor could I shake the thought of waiting for a newborn heart with a lot of other people who were on a waiting list. I couldn’t imagine ever having to face those families who didn’t receive a heart in time. The source of the hearts are usually from infants who have suffered severe head trauma. It all just bothered me inside.
With all the statistics and opinions of various heart specialists and information given, I even considered compassionate care. I really really struggled with my child being the subject of a relatively new procedure that could easily be an experiment. A couple decades ago, it seems that compassionate care was really the only option after the child was born. Compassionate Care is the term used to just make the infant comfortable for the duration of their expected life which was typically between 2hrs and a week… I wrestled with this for a number of weeks and prayed for God’s guidance and for him to reveal what he would like us to do. I thank God to this day that medical science has allowed us to pray and have others pray for us and give us the opportunity to do what’s best. For compassionate care, I could not see myself having to go through having to bury my own child! I would always remember Gabby saying to me on occasion before any of this even happened that ‘no parent should have to bury a child of theirs’. One day I bought the book online called “Waiting With Gabriel” and I read the entire book one evening in about 6 hours. For any of you that know me that well, know that I have never read a novel/book from end to end nevermind in one night! The experiences and the emotions this person was going through were exactly mine at the stage we were currently at. When I finally got to the part of her choosing compassionate care and her experience, I couldn’t place myself there. I had to do something … After a lot of prayer for God to reveal to us what we should do, Gabby and I eventually just came to a common conclusion without too much discussion and that was to proceed with the 3 operations. Gabby and I discuss quite frequently that we don’t know where we would be today if God was not in our lives. I cannot help but think that everything that has happened to me in the last 6 years was Gods plan for me. From meeting Gabby 7 years ago and debating hardly about God, the Bible and Marriage (of course you know who won 😉 Its amazing to look back and see that me debating so hard that I dug into the bible and the truth was revealed to me in a different way!), to finally arriving at Maple Ridge Alliance Church, to taking Alpha, to taking the Philippians, to getting premarital counseling, to getting married, to taking the Marriage Course, and taking it again (and will again!)… all at the same time immersing myself more and more into his Word….. Where would I be today without God? I couldn’t tell you but I have a feeling I might/could have been angry, bitter, and depressed… I give all the glory to Him for getting me to where I am today. Thank you Lord!
I know I have a lot more to share and am missing a number of other moments but I did want to get started on something. I may revisit this post from time to time adding more thoughts.
Today… We are in Edmonton, Alberta awaiting the arrival of our precious gift.
So today was our first schedule appointment to have the Fetal echo done at the Royal Alexander Hospital which is equivalent to Womens’ hospital in BC. This is were all the women with high risk pregnancies deliver.
Our appt was at 8:30a.m. we made it a bit late because didn’t realize it was rush hour around that area.
Anyhow they did the fetal echo and found no new findings with the baby’s heart, everything looked as to be expected from the findings that were done at BC Women’s. Fetal Echo’s only concentrate on the baby’s heart. Later in the day we had another regular ultrasound that monitors everything about baby. This ultrasound shows that everything is normal with baby such as the growth and brain and fluids around baby all seem perefectly normal. So that is good news and apparently baby weighs approx 6lb 10oz already, so I was really happy to hear that because in order for baby to have their first surgery they need to be at least 5lbs. YEAY!! all that cheesecake and cakes I’ve been eating is finally paying off HE!! I am hoping for an 8lb baby, never did I think I would hope to push a baby out that big, but its best for baby to be plumpy. Chubby babies are always soo cute anyways. I still have two more weeks to plump this baby up. I honestly think this baby will be the biggest of my three kids. Hayden was 6lb 12oz and Hayley was 7lb 11oz. So they were pretty good size. Also they won’t try to induce me which is good just because they obviously want baby full term and the bigger the better.
Tomorrow we get to meet with the surgery team at the Stollery University hospital. So we get to meet the Dr’s that God will use to due the 1st surgery on our baby and where the baby will be staying after surgery.
I pray that I can hold the baby and be able to breastfeed once he/she is born and that he/she won’t need a feeding tube, that is what I am hoping to be able to do right away before they take the baby away and start putting IV’s and stuff on 🙁 .
I know God is with us through all of this, so I am not too worried. I know this baby is a fighter already and will be one strong little person.
Well we are finally here and made it without any problems whatsover, everything went really well and the kids behaved amazing. I think it helped tremendously having to travel in a motorhome vs a 4runner truck. The kids were able to move and play games, puzzles eat at a table and have their naps lying flat instead of in a carseat. That was my biggest worry was having the kids be sooo restless in their carseats which I can’t blame them one bit. Who really wants to be strapped down for 12hrs in a car without being able to move besides hands and feet. Well I can’t emphasize enough how grateful I am to Candee and Sam Goh for offering to bring us to Edmonton. I am worry about the way back, but I will try not to think about that right now 🙁
Anyways, it was very comfortable for me as well, I was able to go to the washroom every five minutes which is part of pregnancy but it seems like I have to pee a lot more than any other pregnant woman out there UGHH!!
It took us two days to get here. On Sunday we stayed at RV Hotel and that was fine and we were back on the road by 9:30 once again. I think we only had about 5 to 6hrs to go so that was nice. We stopped for lunch for about 1hr and kept on moving. We arrived in Edmonton at 4:35p.m.
I was amazed on how well everyone did. Once we got here the Hotel they had original sent us too was extremely sketchy, Chris said it was so scrubby that the carpets were blue but with black spots and the curtains and everything smelled musty and smokey, not really a a place where we wanted to stay with two kids and being very pregnant. So we booked another hotel and that’s where we are at right now which is Ok, we don’t have a kitchen so it’s been pretty hard to make anything, we actually don’t even have a small fridge, so having to give the kids milk has been hard. I can’t wait until next week where we move into the Ronald Mcdonald house and apparently that is a pretty nice place and the kids will have more room and be more comfortable and I will be able to make food instead of having to buy stuff all the time. We weren’t able to go straight to the Ronald Mcdonald house because they only take pregnant women 2 weeks prior to their due date and the Dr’s wanted us here 4 weeks prior to due date, but we are here 3 weeks prior to due date which is April 23rd, had to compromise a little bit.
After settling in the hotel the next day our friends Sam and Candee wanted to venture to the West Edmonton Mall before they headed back on their trip in their motorhome, so we joined them for about a couple of hours , took the kids to play putt and glow mini golf, Hayden and Hayley had lots of fun with that. Soon after it was time for our friends to depart and we would go our seperate ways. I was really emotional just because Chris and I were arguing, maybe because the stress about being here already was getting to us or the change or scenery. Anyways it was emotional to see our friends leave and just felt alone in an unknown city. Tomorrow we start our Dr. appointments and see where we are at with things and how baby is doing.
I worry about the kids mainly, sometimes I feel like I am so short with them and so is Chris and it’s not really fair for them having to go through so much change and moving them around and taking them to Dr appointments. So far they have done amazing, can’t complain and Hayden is even doing awesome with potty training. So that is a really good thing, I think he might even be almost fully potty trained, but won’t be surprise if accidents come along the way.
The day has finally come, we are actually going to be temporarily moving to Edmonton Alberta to deliver our third baby.
So many last minute things and last minute packing. I felt like I had to leave everything in good order before we left in order to come back to normality. I guess I can be a bit of a perfectionist in that sense. Well I did have to surrender to a few things though which was the fact that I am 37 weeks pregnant and can’t move as fast as I am use to or do things too fast because I get tired just going up the stairs. So considering I had to take many breaks, I did manage to get things done around the house and I also had to surrender to asking for help with the kids and I am so glad I did thankfully not having kids to interrupt me every 5seconds it seems, it was a tremendous help.
Well with only having approx 3hrs of sleep I am not feeling too tired this Sunday morning. The adrenalin is kicking in and feeling the stress a bit and freaking out a bit and my mind is raising and making sure I didn’t forget anything specially stuff for the kids. If I did I don’t remember anymore.
We are to meet our friends the Goh’s at 9:00a.m. They have been extremely kind and have offered to drive us in their motorhome all the way to Edmonton and Chris is to follow in his truck with all our things. I will be forever grateful to them for this generous offer.
I figure if the baby hasn’t come by now because yesterday was soo stressfull, this baby doen’st want to come out until the exact due date which is the 23rd of April.
We managed to start our road trip at 9:30a.m. not too bad I have to say and I honestly felt at ease leaving and starting our journey, I was a bit sad because I was going to miss my family and even yesterday I was a lot more sad and had a few moments where I broke down. So much change happening I felt. My brother left this morning with his wife and baby, they moved to Toronto and who knows when I will see them next, so that was emotional they came to say goodbye last night at midnight, I will miss them lots and miss my little nephew sooo much 🙁 My parents are currently left without any grandkids and I know how much they will miss the kids while we are gone 🙁 I know that everything is happening for a great reason and I am ok with that right now.
We finally made it to Edmonton, I (and so did Gabby) tried posting something earlier but I lost it because the internet connection from the hotel is quite spotty. This time I’ll be sure to backup often. Anyways, Saturday was a hectic day as we tried to get some last minute tasks done. I had to do some tune up’s on the truck before we left including changing oil/cleaning air filter, changing the oil in all 4 casings in the transmission. I had a few problems that day because I had 2 nails in two separate tires at 2 separate times, not to mention that the first time i waited 1hr at Kal Tire only to find out the wheel lock was put into a box by the car detailers a few days before and I had took the box out at home! As time was running out that day, I had to make a last minute decision on whether to change the front brakes on the truck as they were getting a little “squeaky”. 530pm and a phone call from Sam convincing me to do it, I rushed to Lordco to pick up a pair of rotors and pads for the front and Sam and my brother-in-law Andy helped out that evening to get the job done.
We left Sunday at 9am from our house to meet up with the Goh’s who had thankfully wanted to help us by driving Gabby and the kids up in their motorhome. I was going to follow them in my truck because we were going to need a vehicle for the duration of the time we are to be in Edmonton (about 2 months minimum). We packed up a few things in the motorhome at the Goh’s and left around 930. I drove myself but needed to make a stop in Mission for gas (and a Rockstar) and for a coffee at Starbucks. I didn’t see them until Merritt after getting a phonecall from Sam only to find out I was 30mins ahead of them. I kept asking myself, they couldnt be going that fast in the motorhome? It turned out to be a good thing because I had a chance to sit in a fairly empty parking lot in the sun for 30min with just me and (re)reading the Book of Job.
The kids and Gabby really loved being in the motorhome on the way up because the kids weren’t as restless and were able to play with the Goh’s children who were also about the same age. It was also good for Gabby since she was able to stretch a little bit and use the washroom for her frequent breaks because of being pregnant. We ate lunch, filled up with gas and moved on to Valemount to stay at the Rocky Inn; a good stop for the motorhome and a place for us to check in for the night. We ate dinner at the Rocky Inn around 530pm. After getting ourselves ready for bed and getting the kids ready for bed, we were all asleep before 9pm. Before falling asleep Hayden kept expressing his concern that “the motorhome was going to leave without us”. I guess he really enjoyed it!
After a breakfast in the morning, we started to drive again around 10am and had lunch just after passing through Jasper, AB around noon. The kids, especially Hayden didn’t want to travel with me in the “bumpy car”. I took some video on the way up of the amazing scenery since the weather was great on the way up for the entire trip! I’m hoping to put together a short video clip of our 2month trip sometime in the future.
Around 430pm we arrived in Edmonton, and the Goh’s checked into the RV park (the site wasn’t something they expected) but ended up settling in there for the night. Sam and I went to check out the Travelodge where we were booked in for the week…. Not happy! Upon walking into the place, all I could smell was a musky smokey smell. I was skeptical so I asked the check-in person if I could see the room before checking in… Upon taking us to “Room 111”, and looking in, there were 2 small beds in an all-blue room, with the of the beds being about 2ft from the wall. There would be no room for a playpen for Hayley… not to mention the smell of cleaning chemicals and the room smelling really “damp”. I was expecting to be a little uncomfortable for the week in a hotel room, but not this uncomfortable. I decided I wasn’t about to check in to this place and we looked for an alternative. We ended up booking at the Sawridge Inns in a rush to find a place and finding out we are paying slightly more than double each evening. BOOOO. At least the room/beds were a little bigger and they kids could move around a little bit during the evening.
We’re all settled in now but with more stuff than we’re able to carry back in the truck :-D. I will worry about that later (I’m thinking we’ll use Greyhound to ship some stuff back)
Anyways, we just wanted to give a quick update on our trip up here. More later (maybe a little less “guy’ish” as Gabby puts it haha)
Today is exactly one week before we leave for Edmonton and it feels like our lives are about to change forever. So many emotions come with that, anxious, scared, nervous, just simply not being sure what this journey is all about, just trusting and believing that we are in God’s hands and he will lead us through the way and never let us go, always holding us by the hand.
As I have began to pack up our house, it actually feels like we are moving away and I get sad about it, I feel like I am leaving everything behind. At least everything that is of comfort and we are use to having on a daily basis. We just got back from my parents place from a goodbye party for my Brother and his wife and little son. They are moving to Toronto and leaving the same day as we leave to Edmonton. I feel like so much is changing and it’s becoming a bit overwhelming and I don’t want to be sad, but I find myself getting the feeling come over me and I really don’t like it. I start thinking how I will miss everyone while we are gone, yet I start to think that this is how it’s suppose to be, life can’t always be so comfortable, mind you life with two little kids under the age of three is always entertaining and a challenge to say the least, from potty training to tantrums to endless cleaning and endless yelling to get something done. But really in the great scheme of things, that is what normal parenting is all about and I wouldn’t trade it for anything and at the end of each day, it’s been worth it and some days are easier than others and that’s OK.
I just know that this journey at this time of our lives will be a big change for sure, but also a blessing and I think that’s what gets me through the sad/overwhelming moments. It’s not easy to let go of comfort yet sometimes we have to because “God not only knows where he is taking us, but he also knows how to get us there” I guess as humans, trusting and letting go of things is not so easy. I think about times when we tell our kids to do something and they either don’t get it or are being stubborn or choose to do the wrong thing. Well I am sure we are the same as adults when God is asking us to do something how come we don’t just listen. I know our kids trust us but choose to be disobedient so many times, so is that how we are when God is trying to tell us something and we just don’t want to get out of our comfort zone.
I think about how Jesus died in the cross and it was the most brutal death you can imagine, yet God being everything and could have easily changed those circumstances and made things so much easier. He allowed for those circumstances to happen, not that he wanted to have that happen to Jesus, but what came out of it all was greater than all of us. Jesus died in the cross for all of us, so we can now have a personal relationship with God. it’s amazing really, but I think about our situation that we are going through and of course we have prayed for healing of the baby’s heart and so far none of the ultrasounds have shown us any changes or at least that the Dr’s can see, yet I know that God isn’t showing us his miracle just yet, but I know there will be one.
Chris and I decided to set up this blog so we can share our life with our two great kids and with our third due April 23, 2010. It is something we have been wanting to do since our first child was born, but never got around to it. Now it just seems like a great thing to do to keep our thoughts and everyone informed as to what’s happening with our lives and to document/journal important information . As you may or may not know, our† third child has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and it’s a journey that we will be entering or are already in which, we feel will be a total life transformation, an emotional rollercoaster and we will be or are being tested in everything from, our faith to our commitments to eachother and we will come out of all of this so much stronger and with so much more love and appreciation for everything in life and the many blessing that we have already received. for more information on to what HLHS is and how and when we found out about this go to “Baby Torrens”
Chris and I met when I was 24 and he was 30. We started of as friends but
We have now been married 4.5years and feel we have been through a lot of wonderful things in our lives. There is always struggles of course, I don’t think we would be human if we said we had everything perfect and figured out because we sure don’t. We got married in June 2005 and decided we were going to wait 1year to have kids. Sure enough we were blessed with Hayden after almost a year of being married. He was born Dec 23rd of 2006. It was about 5months after Chris’s Dad passed away unexpectedly. Hayden was such a blessing to everyone in the family. First grand child on my side and 4th on Chris’s side. I will talk more about our boy under “Hayden Torrens” Adjusting to having a baby after just being the two of us wasn’t too bad. We loved having a little person in the house, we did miss not sleeping, but it was all worth it. We celebrated Hayden’s 1st Birthday and soon after we found out we were pregnant with our precious little princess Hayley. I can’t say I was really ready for another baby, I was really enjoying my time with Hayden. Everyone that asked me when the second one was coming, I would say not for a while because i did want to wait until Hayden was at least 2 or 3 years old. Well God said it’s time for the next one and Hayley was born on Aug 23rd, 2008 exactly 20months apart from Hayden. Of course we fell madly in love with our little girl and I was just so grateful to have one of each a boy and a girl and in the order that Chris said he wanted them. I remember being so nervous when I found out I was pregnant with Hayley and having thoughts like “how am I a going to love another child as much as my first” and now I think about how silly that thought really was. The moment they put her in my arms I loved her immensely and in a special way that I do for both of my kids. They are both individuals and different in so many ways and I love that they are different, I love their uniqueness and specialness about them. Life is so full of wonderful memories with both of them and can’t imagine not having either of them at this point in my life. I just thank God every second of the day for them because they sure fill up my heart with tremendous amount of love, can’t even explain it how much.
Life looked perfect if you were to look from the outside, I mean we have been blessed with just abundance from the moment we met. We both had good jobs and had our careers in check at the time and we were able to buy a brand new house when we were married and able to fill it with things. We truly have been blessed from the moment we met and knew we were meant to spend the rest of our lives together and sharing and dreaming about our futures together. Marriage is always tough but we are thankful God is in the middle of it. We have had struggles of course and continue to do so, but nothing we won’t overcome. Having kids brings a whole lot of new challenges for sure, from changing diapers to how to discipline them and be in agreement in doing so.
So now we are a family of four and people make comments about having the million dollar family that everyone wants. Well it wasn’t the end of us adding to the family, even though at times I thought for sure that’s it, no more kids, specially in challenging times with them. I said God has blessed me with One boy and One girl and I am sooo grateful for that and can’t ask for anything more really.
So soon after we had celebrated Hayley’s 1st Birthday something just didn’t feel right, I was soo tired all the time. I waited and waited and really didn’t want to get tested of fear of being pregnant again at this time in my life. Finally I decided to go into the clinic and get tested and I remember being so nervous and I had to go on my own because Chris was waiting in the car with the kids. It was a Sunday right after church. I remember it was a random Dr that I had never met before and told me, “test is POSITIVE” I don’t know what he saw in my face but said “I’ll give you some time and write it in your chart” I wanted to get out of there so fast and probably did. I said thank you and as soon as I got to the car, I couldn’t hold my tears any longer, I started bawling my eyes out and didn’t want the kids to really see me like that, but I couldn’t control it. Once we got home we put them both to have a nap and i just sat in the couch with Chris just crying and crying and told and asked him. how am I going to do this, I don’t think I can do this, I already have such a hard time with 2 kids, how am I going to do it all? He assured me we will be fine and he was happy because he has always wanted four kids he says. I kept telling him, your not the one that deals with them 24/7. I just felt so horrible having feelings of not being ready for another child, I hated that feeling, I mean I didn’t understand why I would feel that way. I have a wonderful, loving husband and two wonderful kids, we are stable in our relationships, why wouldn’t I be happy to add to our family? Why was I feeling so overwhelmed about this pregnancy? I didn’t even want to tell anyone about it and left it up to Chris to do it after telling our family which we decided to tell them for thanksgiving dinner. Even that didn’t go over to well because I remember Chris and I were arguing about disciplining Hayden and I was just emotional about everything really. Chris told everyone really fast and nobody looked super happy, not sure why to this day but that was kind of discouraging to say the least. I don’t think we will ever get the same excitement and reaction that we did when we first told them we were 1st pregnant with Hayden I suppose. I guess it looses it’s affect after the first one.
I think that even to this day I feel horrible for having such negative feelings about this pregnancy at the beginning and how selfish I have been in wanting everything to be easy with just the two kids and Chris and it was comfortable. I think now how could I be so mean and almost ungrateful to God for wanting to bless me even more with another beautiful child, to add to our family and our life story. At first I thought after finding out the news about our baby’s heart condition, I thought God was trying to punish me . Now I know how silly those thoughts were as well. God didn’t cause this or did this to our baby, he loves our baby and wants what’s best for all of us. I remember amongst all the mix of emotions reading part of this passage on someones facebook status and since than, it’s been part of my journey and I am holding on to it and just trusting and believing that all of this is for a reason.
Jerimiah 29:11
“For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me with all your heart. I will be found by you, declares the Lord. ”
I have asked God for forgive me for having those thoughts and not really trusting in him. I thank him now every day for this baby and for the blessing he/she will bring to our lives. All I want is to hold this little person which I have been given the privilege to be his/her Mom. I am going to nurture this little person and love and ensure they grow up to be strong and someone of great faith.
