The first days

We found out that JT needed surgery when he was 5 days old. He needed a PDA ligation. This is where they go in through the side of the chest and close the vessel that is connecting the pulomonary artery and the aorta. This was supposed to be an easy fairly quick surgery. 45 minutes at the most. I remember going in there and right before his surgery, I got to give him his first bath, and hold him as they switched him to the warmer. It was the best feeling in the world. I kissed him for the first time and just talked to him and let him know who I was. It was one of the hardest things that I had to do, watching my child go into surgery. Well, I waited and waited and waited. An hour and a half later, they finally came out and let me know that because they weren’t sure where his PDA was located they decided that they would wait and have someone more experienced do it and that would entail moving him to Cincinnati Children’s. Not the answer I was looking for, but, if it made him better, I was all for it. I sat in the OR room they have right there in the NICU with him and went with him as they moved him back to his incubator. I got to help and hold him again. They had to put a chest tube in him because they nicked his lung. They tell me that sometimes it happens with babies this small. It just had to heal and it heals quite fast. He only had the chest tube for about 3 days. Each accomplishment that had happened was something to be celebrated. We celebrated every day that he was alive and growing. After all he wasn’t supposed to make it 24 hours and he was at the time 5 days old. Johnathan was on a lot of medications from the day that he was born. He was on 4 different pressers for his blood pressure. He was on TPN/Hyper All. People have so many different names for it. It is IV nutrition. He got this instead of food because he was too young to suck. He had an NG tube down his nose to suck out any secretions in his stomach. He also was on a ventilator to help him breathe. Very scary to look at. JT’s (you’ll hear me refer to him as both JT and Johnathan throughout this whole piece), billirubin which is a level measured in your liver was high which meant that he had jaundice. The put those wonderful sunglasses on him and he looked like a little bug. They also put lights on him. We used to joke that he was getting his tan. The other thing they did was humidify his incubator. Which meant that it was very hard to see him through all of the humidity. It fogged up just like your mirror does after a shower. It was so frustrating that first week. I couldn’t see him. Couldn’t keep the hand ports open very long and I couldn’t touch him because of his skin being so fragile. And anyone knows that all you want to do is just pick your baby up and love on him or her with all that you have. I couldn’t do that I had to settle with just looking and talking and hoping that he could hear me above all of the machines.