Officially. I would say it was the worst day of my life, but I’m trying to stay positive and realize it could have been so much worse.
It all started when little Stevie had his 2 week check-up with the pediatrician. When we saw the nurse to measure and weigh him, she looked really concerned and asked “Is he OK?” I was kind of puzzled by the question, but told her yes, he was probably just fussy because we had to take all his clothes off. She said that he looked really blue to her. I told her sometimes when he cried really hard, he would turn a little blue, but it didn’t seem abnormal to me. Probably because he would always calm down quickly and return to his regular color. She sent the doc in who had some more specific questions for us. Was he eating normally? Pooping? Peeing? Throwing up? All standard stuff, and everything sounded normal from external appearances. She listened to his heart for a long time and tested the oxygen in his blood. He seemed OK, but she still wasn’t pleased with his “dusky” coloring. She asked that we take him to the emergency room right away.
My husband and I were a bit surprised, but of course we went. They checked us in quickly, started running a bunch of tests with him in my arms, hooked up to all types of machines, and determined that he should be admitted to the NICU right away. At this point, we had no clue what was going on. There was talk of a respiratory condition or possibly even a heart defect. We had to wait outside the NICU as they hooked him up to even more machines and tried to get him sedated so that he’d be comfortable. Within a couple hours, a cardiologist arrived and did an ultrasound of his little heart. It almost killed us waiting for the news and seeing the poor baby looking so sick. It was honestly really hard for us to keep it together at all. There were lots and lots of tears today.
But here’s what they had to tell us: Stevie does have a congenital heart defect. It’s called “Tetralogy of Fallot with Pulmonary Atresia” Yeah, all those big words didn’t mean much to me either. But the cardiologist was really good at explaining so that we could understand. Basically, the baby’s Pulmonary Valve never formed. It’s one of the major valves in the heart and pumps air to the lungs. He also has a hole in his heart between the left and right side. There is no way to fix it other than heart surgery. The reason he was able to live this long without any symptoms was because all babies are born with an extra vein that supplies blood to the placenta while they are in the womb. Normally, this extra vein closes up once the baby is a few days/weeks old, at which point the heart and all the regular valves take over, getting air to the lungs. His body was using this extra vein to supply blood to the rest of his body and once it started closing, he started losing oxygen, giving him the blue appearance.
So Stevie will be having heart surgery as soon as possible. They will put in a fake valve for now, and when he’s about a year old, they will put a more permanent valve and patch the hole in his heart. The positives are that A) The pediatrician caught this in time. It was honestly such a blessing that he had an appointment today because we don’t know how long he would’ve lived had we waited. B) Of all the heart defects to have, this is one that is relatively easy to fix and the success rate of surgery is very high. The surgeons deal with this type of defect every day. C) The nurses keep telling us how strong he is. He’s a little fighter and should recovery fairly quickly. He’s been very stable so far and looking good.
Now Daddy & I are getting ready to have him transported to the Children’s Hospital. It’s nearly impossible to look at his tiny body and keep it all in perspective, but we are trying really hard. We are just asking everyone to send a few extra prayers our way that he will be OK. That my husband and I can find comfort during this time. That the doctors are making the best decisions and will have steady hands during his procedure. That the baby will know we are there and loving him, even though he can’t really respond right now.