Update - April 10

I know it’s been a few days since I posted. As you can imagine life has been keeping me spinning. Since my last post a lot has happened. Avigayil managed to extubated herself again. They let her try to breathe on her own for 30 minutes, however she needed to be reintubated afterwards.  They switched her ventilation afterwards to something gentler.  They slowly increased Avigayil’s food intake, however, they had to stop because she needed a blood transfusion.  The transfusion seemed to help and they restarted her on food through her NG tube. Shortly after that she started to retain fluids so they had to increase her food intake and decrease her TPN (the nutrition replacement she gets through IV). However, this morning she vomited the TPN and they had to back off the food.

Today, her abdominal circumference was slightly enlarged and between that and the vomit they decided to take an x-ray. The X-ray showed one loop of bowel was slightly enlarged. This was the first sign on the dreaded necrotizing enterocolitis, but it was not enough to know what direction she was going in. They stopped all food and decided to repeat the x-ray in the evening. Meanwhile, her echocardiogram came back with good news. Her pulminary hypertension is almost gone. They were able to wean her of the nitrous oxide completely. When I went to visit her in the afternoon the gigantic tank was gone from her room.

I waited and prayed while they took the next X-ray. The development of necrotizing enterocolitis is so scary because it would require emergency surgery. Avigayil is not strong enough for such a surgery and it would be a huge risk for her. While we were waiting for the results Dov ran into the Bostoner Rebbe. He gave Dov a bracha (blessing) for baby Avigayil. Shortly thereafter the results came in. Her X-ray was fine, B”H!! All in all, she has been very slowly improving. We are cautiously optimistic at the moment.           

They say that having a baby changes you. We know that that is true, our first four children taught us that. However, having a preemie changes your life more than you can ever imagine. When talking of the baby words like cute, sweet and wonderful are replaced by words like stable and unchanged.  I went out today and although most people in our community know about what has been going on I ran into some people who did not know. It was a challenge to accept the Mazal Tovs and answer the questions about where the baby is.  While many parents are excited about diapers because it is proof of their parenthood we are excited about each dirty diaper because it moves us slightly farther from surgery. Life is certainly different now.