Three Months Old Today

I am down in Little Rock, Arkansas visiting Jack. He is having a hard time. When I got here Tuesday night Tierney called me. She was at the hospital and wanted to tell me that Jack was back on oxygen. When I got there the nurse said hat he stopped breathing and required a long intervention. They had to put him on oxygen after because his oxygen saturation was remaining low. He was on 40% oxygen which is really high for him.

When I saw Jack the next morning he was off the oxygen. I saw able to speak to the doctor. He told me that they had tried to take Jack off his caffeine. He gets caffeine for stimulation. It helps his heart rate and his breathing. They took him off that and about two days later he had that huge episode.

The doctor told me that he felt Jack would be on a heart monitor and caffeine for 4  to 6 months.  He said that his reflux is so serious that he thinks he will need surgery. He believes Jack needs a surgery called a nissen fundoplication. In this surgery they wrap the upper part of the stomach around the esophagus. This is a pretty extreme measure and is only for infants with life threatening reflux, which   Jack has. The reflux threatens his breathing and he has a huge risk of aspiration. He actually sounds pretty raspy to me now and he has a bit of a cough. There is a possibility this was caused by a small aspiration. He does not have a fever, so that is good.

They do not do this surgery at Baptist Medical in Little Rock, Arkansas. Jack would need to be moved. The doctor called Columbia Presbyterian in New York, NY to see if they would take Jack. We are hoping that my insurance will pay for his transfer since he has a medical need for it. It is possible that they may say there are closer places where they can do the surgery. Columbia Presbyterian is about an hour away from my home, but I am sure I will be able to get there pretty frequently. Apparently they have surgeons who operate on tiny babies all the time.

They still do not know why Jack stops breathing. It has become less frequent but it still happens. Some of it is related to the reflux but some is not. I was holding him when he had his feed via the transpyloric tube (into his intestine). At one point he had a huge reflux and since there was suction right the I was able to handle that. Then he was sleeping name and stopped breathing. The monitor went off and all he nurses came in. He resounded to stimulation and started breathing again.

I realize that Jack is not ready to come home. His medical needs are so great that there is no way I can care for him there. I know I can do a lot of the medical things but the truth is he wouldn't be able to have my eyes off him long enough for me to go to the bathroom much less sleep.

There are a few good things to report. Jack had an echocardiogram and his PDA has closed. He will not need any surgery to close it because it did it on his own. He also had his eyes checked while I was here and they are looking pretty good. He still has some immature blood vessels but he no longer has retinopathy of prematurity. It has corrected itself. He still needs to be checked but it is looking good.

So, despite being 3 months old today Jack still has a long way to go. It is a bit overwhelming to say the least. There is nothing I can do and that makes it worse. I prefer to be doing something to take care of the problem. For know I am hoping he can get his transfer to NYC . Maybe the surgery will make a big difference for him.

Thanks everyone for all the  good thoughts and prayers!