Day 3

Wow - what a day! I am exhausted, completely - so this will be short. A very bitter-sweet day to say the least. I joined Caleb in the NICU this morning where his oxygen help was still about 45, which is what it was the night before. So at least it was stable. Over the course of the morning, the nurse was able to turn it down little bits at a time and Caleb was able to keep his own oxygen level within the range they have set for him. The neonatologist also changed his feeding tube orders from 2 ml every hour to 4 ml every hour. He also said to try 10cc's (less then an ounce) of a bottle twice a day. So the nurse mentioned she would like to give him a bath a little later in the morning and then we could try the bottle a couple hours after that. We can't over stress him and the bath was certainly not his favorite thing to do. Not that being soaked with water in your bed would be fun for anyone. So that was enough for that visit. Later when we went back around 4, our last trip in there before I headed home, his oxygen help/hood was only in the 20s! The nurse said that we all walk around with 21% oxygen in the air, so once he was able to handle his oxygen level with only 21% oxygen, they could try to take the helmet off. What a blessing that would be and certainly helped this momma feel better as she was having to head home without him. It was bittersweet to come home without him, yet wonderful to be with Ryan and Sara again.

Oh, he took the 10 cc bottle like a champ - which is very good for a Down Syndrome baby. A lot of DS babies do not know how to suck or have such tongue issues that they can't suck on a bottle, etc. So it was truly wonderful to see him drinking anything out of the bottle, even if it was a tiny amount.

We called this evening to get an update and were kinda discouraged to find out that his oxygen hood has had to be turned back up to 35. We were so close! The nurse mentioned that she had called in a respiratory specialist to make sure all of the leads, etc. were working properly that it wasn't an equipment failure or anything like that, but no - for some reason Caleb is needing more oxygen tonight. We are just praying that it does not continue to go up, otherwise the respiratory specialist will have to be called and who knows what they will end up doing. :( Not fun news as I try to go to sleep and spend our first night at home without him. Here's hoping it will not need to be turned up anymore over 35!

See you tomorrow...