Case was in NICU a total of 4 weeks and 6 days. The first day I got to visit was a day after his birth. It was terrifying to walk into that hospital and see my child lying there on a ventilator and with tubes everywhere but on the other hand it is absolutely the only place I wanted to be. There were so many ups and downs in there. He would do so good and then all of a sudden have a set back, what a roller coaster ride, but I feel our ride is just beginning. The wonderful thing about NICU though is the nurses. There are so many of them that hold a special place in my heart and I was sad to say goodbye to some of them even though I am more than happy we are no longer there. The back and forth to the hospital was exhausting and our last week there I kept breaking down and was not sure how we were going to do it much longer. I feel very selfish saying that as some people stay in NICU for months.
Case had the Norwood hybrid 11 days after birth, on Oct. 1. Luckily this operation is performed in the Cath lab and he wasn't placed on bypass. They still do open heart, they go in and stent the PDA (valve babies are born with that usually shuts soon after birth but in Case's situation has to stay open) and place two coronary bands on the coronary arteries to control the pressure of blood flow going to the lungs. He did wonderfully. I will admit though that the look of that baby after surgery was the most terrifying thing I have seen in my entire life. He was pale, the was not moving at all and there was a tube draining blood. I was unaware that it would be like that. Bruce had to stand behind me to keep me from running, I was terrified. They would sedate him and he would just lie there, it was horrible. Luckily within 24 hours they back the sedation meds off and he began to be more normal. Everyday after surgery tubes would begin to come off and he would look better. The breathing machine came out 3 days after surgey after a failed attempt a day earlier. 5 days after surgery we were finally able to hold our son for the first time, 15 days after birth. That's when it began getting hard because after getting to hold him I never wanted to leave.
Slowly Case got stronger and better but the next Monday,one week after his surgery, the doctors had to go back in. The PDA had began to close when they put the Stent in so they had to balloon that and then they had to balloon his arterial valve because it was narrowing also. He did extemely well and after a few days began eating. He never had a problem with his eating which sometimes is a major problem with heart babies.
Our Case is home now and if I was tired durning our hospital stay it is nothing compared to the exhaustion now!!! I wouldn't change it though. To have him home with us is a miracle. He is thriving, he gains a few grams daily and at his weekly cardio appointments we are being told we are doing great and that he is doing good heart wise.
Our second surgery is scheduled for Jan. 10 and already I am nervous but God gave us Case for a reason and I am sure he will continue to protect him.
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