Thursday, April 21, 2016

Jake Dennison

We were so excited for the pregnancy of our 4th child! At our 20 week check-up we were so excited to find out what we were having! It was a BOY! Our son was so excited to finally be getting a brother and making an even 2 boys 2 girls! At that scan, the doctor explained that he would like us to have a more extensive ultrasound to check his heart a bit better, but didn't give us much more information, because he wasn't sure. A week later we went in for the other ultrasound and that is when they diagnosed Jake with Hypoplastic Left Heart Syndrome (HLHS). They explained it a little, that it meant he didn't have a left side of his heart. They were so sorry, and asked if we wanted to do an amniocentesis, which would help determine if there were any chromosomal abnormalities. After the amniocentesis, they said we had 3 options with our baby. 1) Attempt a series of surgeries to rearrange the way his heart would work, 2) hope he was born healthy enough to go to California and be put on a heart transplant list and hope we would get one within the first week or 2 of his life, or 3) take him home after he was born and he would live about 1 week, if that.
We were devastated, but immediately started looking in to who would do the surgery and what chances our baby would have. Only two hospitals could help Jake. We chose St. Joseph's since we felt really comfortable with the surgeon and fell in love with the heart unit. It was a scary time, filled with lots of unanswered questions, but the Doctors and staff at St. Joe's were so kind and made us feel like family, and gave us hope. HLHS is not a death sentence, but it is a condition he would deal with his entire life, and at the time he was born, the oldest HLHS child was 24 years old.
Jake was born Jan 21st, 2009 weighing in at 5lb. He was a cute little peanut, but only 2 weeks early. He looked perfectly pink, had great oxygen, and came out crying! He was immediately hooked up to monitors and medication to keep his heart as healthy as it could be, but overall, looked really great! We were able to hold him and have our other children be with him! 

At one week old he underwent his first of many open heart surgeries. Because he was so small at birth they did a modified surgery, so they wouldn't have to put him on bypass. They put a small stent in his heart with hopes that he would get bigger and stronger before his 2nd surgery at 4 months old. The surgery went better than expected. He was hooked up to so many machines, but was stable. Over the next week, he looked better and better and even started receiving food! They even spoke to us about him possibly coming home in a couple of weeks! What a miracle!
At 2 weeks old, he went in for a catheterization, a routine procedure to check blood flow and check the previous surgery. This was supposed to last about 2 hours. 4 hours later they told us that things had gone unexpectedly wrong, in fact, they had never had something like this happen before! We waited for 6 more hours, while they said words like ECMO and blood transfusions. It sounded horrible. Finally, they brought him back to his room, but he was accompanied by 15 different medical staff, and more machines that we thought possible. He was put on ECMO (Life support) and they weren't sure how he would do. He didn't even look like the baby I had given them 12 hours earlier. The stent that they had put in during the first surgery had slipped out of place and they weren't sure of the damage it had caused his heart. They put him on ECMO to give his body time to rest and give the surgeons time to put together a plan. Over the next few days, we had people that had to live in his room 24 hours a day to monitor the machines, then others who were there just for Jake. He was as stable as he could be for those few days. He did open his eyes and look around and would try to cry.
19 days after he was born, they converted his hospital room into a surgery room to try to take him off of ECMO. Shortly after that surgery began, the surgeon came to us in the waiting room and explained that he was losing more blood than they could give him and they weren't sure where it was coming from. They could put him back on ECMO, but our only option would be to give him another week, then try to take him off, but it didn't look good. We spoke about it for a few minutes, but we both knew it was time to say goodbye. We came in to the surgery room as they were finishing up. They gave him to us to hold and let us hold him until his little broken heart stopped beating. His sweet spirit and face will be forever with us!
Before Jake was born, we had some sweet friends give us a super soft blue and white blanket. It felt like he was laying on a cloud. After he went on ECMO those same sweet friends gave us a brown giraffe super soft blanket so the white one would not get ruined. We held Jake for the last time in the giraffe blanket, and we buried Jake with the white/blue one. Those same sweet friends made the giraffe blanket into a large blanket that our family could snuggle with to remember our sweet Jake. After Jake passed, we decided to share that beautiful softness with other heart babies, so we started jakey's blankies. It gave us the opportunity to bring a little softness and sweetness into other families lives. All of the fabric is purchased using donated money, and they are all sewn by kind volunteers! We love the opportunity to share a piece of our Jake with other special heart babies, and are overwhelmed at the kindness of other to donate to our cause.

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