I remember trying to get him to nurse for the first time in the delivery room, he latched on perfect and then just looked at me like he knew he was supposed to be doing something but just couldn't. That continued all through the night. I kept trying to get him to nurse and he would just latch on and stare at me. He didn't cry or act like he was hungry at all. Chris and I thought it was weird that he didn't cry, but we thought it was something we should just enjoy. The nurses thought that I was too young and didn't know what I was doing and figured giving him formula was the answer. They eventually convinced us to try giving a bottle the next morning to see if we could get anything into his system. He refused to suck from the bottle as well. While he was in the nursery to have some blood work done and get cleaned up after that the nurses took the top off a bottle and tried pouring it into his mouth! He threw it up in their faces. During the night, even though he never nursed, he began to spit up. It was a light yellowish color. The Dr. wasn't worried though and said some babies don't eat until they're 24-48 hours old. He said Carter just needed some time to have his first bowel movement and then all would be well. He said we could go home as soon as he pooped. That afternoon his spit up started turning more and more green and his belly was a little swollen. He was then confined to the nursery for observation. I sat there next to him until about 3am when I couldn't keep my eyes open anymore and went to bed.
I woke up at 6am and went straight to the nursery to check on Carter. The pediatrician was there and came right out to speak with me. The first thing he asked was if anyone in my family had cystic fibrosis. My heart sank... The Dr. began to explain that a transport team from Loma Linda University's Children's Hospital was on their way to pick Carter up and he was being transferred to their level 3 NICU where they could do further testing. They believed Carter had something called meconium ileus, which is an intestinal blockage and usually occurs in newborns with cystic fibrosis.
The transfer team got there and started to stabilize him. He was dehydrated, and got an IV right away. (No one from our hospital could get an IV in a baby his size). He was then put into a transport incubator and took his first drive via ambulance. Because the transport team had 3 members and the EMT had to ride in the back with Carter also, we were left to follow in my car. He arrived at the NICU with a blood sugar of 240 and weight down to 5lbs 3oz but he was otherwise stable. Still very calm and alert. They did several tests on him that day and concluded that he had some kind of an obstruction in his small intestine. We met a lot of Drs who told us it could either be an actual closure in his small intestine, or meconium ileus which could be a sign of cystic fibrosis. He was scheduled for exploratory surgery the next morning and they took several vials of blood to send for cystic fibrosis screening. They didn't want to waste any time getting an official diagnosis if surgery showed meconium ileus.
The next morning we got to the hospital real early and sat and rocked Carter while we waited for his turn in the OR. We took a lot of pictures and just snuggled and enjoyed our 3 day old baby who was about to have major surgery. I knew it was serious, but that fear didn't overshadow the happiness. These pictures make some people sad, but they are some of my favorites. This is when nothing in the world mattered compared to being able to hold that sweet baby.
The fear didn't hit me until it was Carter's turn to go downstairs. He was sedated and his arms and legs were wrapped in gauze to keep his temp up during surgery. They brought him out on his warmer to the elevator and all our family members in the waiting room were able to say a quick hello. Then chris and I got in the elevator and rode to the OR with Carter and his nurse. The doors opened into a small area with a big set of double doors leading to the operating rooms. We had just a minute to kiss him and say our goodbyes and then he was off to surgery. Chris and I rode back in the elevator alone.
That elevator ride was the worst. It was the first time I even considered the thought that it might not all be okay. I realized just how close we could be to disaster and could think of nothing better than holding that sweet boy again. All of the emotion from the past few days hit me at once. He was going to be okay, he HAD to be okay. To stay distracted during surgery we first went down to the cafeteria, then all camped out in the NICU waiting room and played cards and ate ice cream. We all tried to be as positive as as possible while we waited for news.
His surgery started off laproscopicly and was supposed to last a little over an hour. It was close to 3 hours before his surgeon stepped off the elevator. We got the best news imaginable. Everything went well. Carter was going to be just fine! He didn't have meconium ileus, he had what's called a type 1 ileal atresia (his small intestine was closed off just before it attaches to the colon). It meant a more complicated surgery; Carter lost 12cms of his small intestine. But it also meant there was no reason to think he had cystic fibrosis! The Dr. said he would grow up to be healthy and shouldn't have any long term problems. He said that if all went according to plan, Carter could be home in 5 days! We were overjoyed. Ecstatic. I learned what "happy tears" really are. I will never forget that moment, it was amazing.
I never imagined before becoming a parent just how intense the emotions that come along with it are. It is immense love that I think I only truly realized when faced with the possibility of losing it all. For the first time, I learned how important it is to cherish every moment we have.
For those that aren't familiar with our story, Carter ended up getting an infection after surgery and spent full month in the NICU. He had a few problems once he came home; we soon realized he was allergic to cow's milk protein and his growth was VERY slow. He was diagnosed as having growth hormone deficiency just before he turned 3 and has anaphylactic food allergies as well. He had a few more Drs appointments than the normal kid, but we expected that as he got older he'd continue to do better and for a few months we didn't worry about his health much. That all changed when Carter was 3 1/2 and we first heard the words Duchenne muscular dystrophy. My mind was suddenly thrown back into that fear of losing my baby. I again vowed that he was going to be okay, he HAD to be okay. We were again reminded just how important every second is. I think we all need this reminder sometimes. We need to slow down and really connect with our loved ones. We need to realize how lucky we are to have the people we do in our lives.
:)
-Rhiannon
Don't worry, there's lots more to Carter's story!
What a sweet baby and an amazing story! :)
ReplyDelete