I didn’t sleep well the first night in the hospital without my baby. I just felt wrong. He was sleeping in his NICU with his nursing staff at his side while his Mom and Dad were in another hospital. I was now moved in the postpartum ward at Vanderbilt, exhausted and waiting to get discharged but that would not happen for another full day. As soon as we were able to go visit him, we did. My nurses were not very happy with me because I was never in my room; I had more important places to be. Day 2 was spent in the NICU. In the NICU there were many rules to follow. Only 2 people in the room at a time, must wash hands before entering, you had to be buzzed in, and if you weren’t mom or dad you had to be “the list” to go back. The whole day was spent letting people in and out to visit and anxiously waiting to hear from the surgeon hoping we wouldn’t miss him. We had no time when he would be by to talk with us just sometime in the afternoon.
At this point we still did not know what we were facing surgery wise. We didn’t know if he was going to be able to use his full heart with some alternations or were we heading down the half a heart, 3 open heart surgeries route. It was late in the evening when his surgeon stopped by his room to talk. They let more than allowed amount of people in the room for this conversion. I apprehensively sat next to my husband awaiting my newborns fate. He said surgery was going to be early the next morning and his plan was to repair his narrowed aortic arch and patch the hole in his heart. Once inside, he was going to have to measure the left side of the heart to see if it would be adequate in size to work. If not then we would have to have the first of a 3 part surgery series, the Norwood.
The unknown was killing us. We did not know what to say to each other let alone to our family and friends who were waiting in the hospital day and night with us. How do you act when you don’t even know if your baby was going to live or die? Exhausted, we both crawled into my small hospital bed and we tried to sleep as much as we could.
End of day 2
We had to be in his room by 6:00 am the next morning but we arrived earlier to spend some time with him. I was trying to stay strong but I could not take it any longer. I broke down once I knew it was really going to happen. I sat there rocking my sweet boy in my arms not knowing if I would ever be able to hold him again. My 2 day old son was about to have open heart surgery and there was nothing I could do about it. They said it was time to go to per-operation area and they rolled his warming unit onto the elevator and up into his little waiting area. There was no one around us, just husband and I alone with our little man. We once again tried to stay strong for him but once the nurses and doctors said they were ready for him and rolled him back, we both lost it. We stayed in the back until we could get a grip on our emotions. After about ten minutes, we headed into the surgery waiting room were our family was waiting. They all hugged us but we were emotionless by this time. I still had to go back to Vanderbilt to get discharged, anything to keep me busy. It took about 2 hours to pack everything up, shower and get my final checkup. We patiently waited by the cellphone for the surgeon’s nurse to call. She would call us every hour or so with an update and let us know how he was doing. The conversation was very short but at least we knew how surgery was going. We got a call stating that he was about to be out of surgery and to head to the surgery waiting room. I was not sure what to think. The surgery was supposed to take a lot longer than 3 hours. Did something go wrong, was he not able to fix it, did he code? I was a mess. We still were not out of postpartum ward but yet again I waved to my nurse and ran out the door.
Waiting to go back for surgery
We had a nurse at the Children’s Hospital nurse take us the long way to around were we would hear the news alone from the surgeon before having to tell our family what was going on. As soon as we sat down in the crowed waiting room, out came the surgeon in light blue scrubs. Very calmly, he said he was able to repair the aortic arch and patch the hole. The big news was he said that the left side of the heart measured adequate! We could have fainted. Our baby was going to have a whole heart! He said he would be in recovery then moved to the PICU within a few hours. We calmly, holding hands, walked to the elevators and looked at each other and lost our emotions once again but this time they were tears of happiness. We had been through so much together the past 9 months and finally we had an answer. We walked into the NICU waiting room just crying. Our family did not know what to think, good or bad? I was finally able to get it out what the surgeon had told us and hugged everyone. To celebrate we went downstairs and had lunch and ice cream. We finally were able to go back to postpartum and finally get discharged.
We waited at the PICU until they said we could go back and see him. We prepared ourselves for the worse. I knew he would be sedated and be hooked up to many machines and IV’s. They said he may even be hooked up to ECMO. This is a heart and lung bypass machine. We walk into his room; there he was, our sweet little baby boy. He looked so good! His nurse, Anna, was telling us about everything that was hooked up to him and why. She was working on him and we were just getting settled in then it happened, he coded. His blood pressure hit rock bottom, stat button was pressed and we were moved to the back of the room. The room filled with doctors and nurses and then in ran his surgeon. He asked the nurse what she did. He said he was too stable for this to happen. The nurse came to the back of the room to tell us what was going on. She stated that he was very dry. Once they started giving him lots of fluids and his blood pressure started coming back up. The alarms stated to silence and he was finally stable once again. She told us he would be very swollen the next day due to the fluid but in a day or two it would go back down. This was such a scary moment that we will never forget.
I have never posted this picture before but now I feel okay doing it. See that little thing laying on the PCCU bed, that is Baby Z. He is hooked up to a lot of stuff 😦
These pictures are scary to look at even now.
About 8:00 pm, our family was able to come back and see him, 3 at a time. Everyone was happy the way he looked. 9:00pm came and visiting hours were over. It had been a long day and we were able to get a sleep room for the night. We gave our little man a kiss and went to bed. We slept very well that night. I do not know if this was due to exhaustion or relief. Whichever it was, it felt great.
That was the end of day 3