Long time no blog

I realized today that I forgot to blog. Then today was a bad day for Ryan so that makes me want to blog about it anyway. I guess it is easier to blog when things are bad then good.

Since my last blog, Ryan has been on high flow oxygen. His oxygen requirement has been between 40 and 45% most of the time. He has still been eating. He has been tolerating his feedings pretty well. He has gotten bumped up to 8 mls every 3 hours. So far that seems to be working well. Of course he should be eating about 28 mls every 3 hours for his size. 8 down 20 to go.

While things hadn't been progressing forward we weren't going back either. The past 2 days however Ryan has been slowly going up on his oxygen requirements. He was having a harder time breathing, they think because he has fluid in his lungs. He has been gaining a lot of weight, more weight then he should be gaining from food so they assume it is fluid. His chest x-rays are still cloudy, which is also conclusive with fluid in the lungs. They have given him Lasix to help his body rid it's self of fluid and that has helped some, but it has still been hard for him to breath.

Today he was on 60% oxygen so the doctor decided to put him on CPAP again. My poor little baby hates being on CPAP. When I got to the hospital today he had only been on CPAP about 30 minutes. His oxygen was down in the 40's at that time. In the next 30 minutes they put him on his tummy and his oxygen went down in to the 30's. Then he went back up into the 40's and back down. Then he woke up, did I mention he hates CPAP. He cried and cried until he had worn himself out and went back to sleep. I decided at that point to leave while he was asleep and his oxygen levels were good. I hate to leave when he is upset or having trouble. I knew if I waited until 6 pm (which was in 45 minutes) that things wouldn't be as good and I would be upset to leave. They kick us out of the NICU at 6 pm for shift change.

Wow so much has happened since I last blogged and today it was all gone. They were dressing Ryan in clothes and swaddling him. He seemed to really like that but they stopped today when he was breathing so hard. They had to be able to see his body.

I was holding Ryan. At first I held him in the crook of my arm on his back and he responded well. After 2 or 3 times though, he started to do very poorly with that. His stats got very low and at one point he was at 90% oxygen while I was holding him. It was very nerve racking for me and I was ready to quit. The next day Ryan had a new nurse. She had heard how badly the holdings were going. I told her I was going to quit holding him for a while until he got older. She said she hadn't seen it for herself and she wanted to see if she could fix things so they went better. This was actually really nice to hear. None of the other nurses seem to care and were quick to want me to put him back when things didn't go well. She wondered if I held him on my chest up towards my shoulder (like you would to burp a baby) if that would help. Since he is so happy lying on his chest this would be a similar position. I had wondered the same thing but the other nurses didn't seem to share my curiosity. Well long story short, it worked great!! Ryan's stats stayed up, he didn't require more oxygen and he really seem to enjoy it. He would wake up and stare at me while I held him. After a while he would fall sound asleep. I can't tell you what a wonderful feeling this was.

Of course now it is over for a while. His nurse today has no interest in letting me hold him. I don't blame her because he was having breathing problems, but when he got upset over the CPAP I think holding him would have been exactly what he needed.

So I am back to a naked baby I can't hold. I don't want to put my needs before his. I don't have to hold him, it is more important to me that he gets stronger and his lungs mature. I don't care if he is dressed in clothes he is just as cute with out them, but is was so nice for a breif time to feel like he was a real baby. Too feel like we were getting closer to having him home. I know we will be back there again some day, I was just hoping we wouldn't have to go backwards on these things.