Thursday, February 14, 2013

Happy Valentine's Day!

Jack is doing pretty good. He has not has as many heart rate drops, but he has had a few. He has been bringing his heart rate up by himself though.

He is still eating via the trans pyloric tube (TPT) which feeds him into his intestine. Today they tried him on a bit by bottle. He took 20 cc and did not spit it back up. That is a huge milestone for Jack. I am hoping he can continue with that. He has to be able to drink from a bottle in order to come home. He is still on oxygen but it is down to two liters per minute.

I was planning to have Jack transported to a hospital that is right near our house. When I initially spoke to the air ambulance company they gave me a "ballpark" estimate of between $10K and $12K. That is a ton of money but I figured it would be worth it to have him nearby. I have since asked them for an actual estimate and it came back at $24,845. Hugely different. They said that was because they would have to bring a plane to the area and because none of it will be covered. They had originally thought some of it might be. I tried another company and they are coming in at about $17K.

Baptist Medical, where Jack currently is, advises me that they think he will be in for at least a few more weeks. But, they said he is really starting to do great and his release to home date will be coming sooner than we know it. I think it is a waste to spend all that money to move him when he might only be in another week or two after the move.

Jack still has issues but nothing like he was having. When he first went on the oscillator it was not looking like he would survive. Then later he went through a period where he was getting resuscitated 5 to 8 times a day. That was very scary and it was not looking good for Jack. I am so happy that it really looks like he has turned a corner. He still has lung issues. His little face is all swollen from the steroids. His reflux is really bad. He still has retinopathy of prematurity (ROP) and will likely need surgery for that. He still has a hole in his heart (PDA) but it is very small and they think it might close on its own.

In order to get out of the hospital he has to be over 1950 grams. He is waaaayyyyy over that. He has to maintain his body temperature in an open crib. He does that. He has to feed from a bottle. He is working on that. He has to be free of apneas and bradys (As and Bs, that is stopping breathing and heart rate drops). He is doing much better with this. He is not free of them yet but he is doing so much better with it. I am hoping he will be free of them soon. He needs to be off oxygen. He is working on this. They have tried to wean him off it and he has not done well. He is on a very low oxygen percentage. He is on about 22% oxygen. Room air is 21% oxygen. His does blow in with a bit of pressure though. I am hoping he will get off that soon.

I am sorry that he is going to have to stay in Arkansas until he is discharged to home. The hospital is a high level NICU and the nurses are great, but I wanted him close to home. I am going down there on 2/26. I can't wait to see him. He will turn 3 months old while I am there with him. I hope the weather is ok here and that I can fly out. We have had a bunch of snow lately and that messes everything up. 

Happy Valentine's Day!!!


  1. I can't imagine how hard it is to be so far away from him, but it sounds like he's coming right along!

  2. Youre very tough mother ... adorable