From now on I am not going to be cocky and declare a good day until the day is done. By the time I got to the hospital yesterday afternoon Nat's O2 setting was back in the 70's and she was working hard to breathe. I held her for over two hours and her O2 setting remained the same. It was so hard to put her back in her crib but the respiratory therapist did not want to draw her blood gas while I was holding her.
Her afternoon blood gas was not good. The CO2 had come back up and it was clear she had not tolerated the change in her vent setting (they came down from 24 to 23 on her pressure yesterday morning). They ordered a chest X-ray and in terms of edema it looked better than the day before. They changed her position in hopes of improving the alignment of her breathing tube and that did not help, either.
I called for the bed time update and she had a busy evening. They did her head u/s to check for PVLs. This is usually done around 6 weeks. PVLs are areas of visible brain damage and I have been nervously anticipating the results. If they do not see PVLs it is reassuring but does not mean she will not have developmental delays. If there are PVLs, well.....we just have to wait and see what the results are. I am not going to get ahead of myself.
So she had the head u/s and the nurse went to suction her mouth. Big surprise-her ND tube was coiled in her mouth. This normally runs from her nose into her small intestines and delivers a constant flow of milk. It is NOT supposed to ever be in her mouth. She must have gagged it up or used her tongue to maneuver it out. While I was trying to fall asleep I just kept wondering if she may have aspirated milk while this tube was working its way out.
The morning update today was not so great either. They had to move her pressure back up to 24 and she still had a bad blood gas after the change. They have not rounded yet so no news on how they will respond to this. I am so discouraged to think of her pressure settings going up instead of down. I am trying to give myself a big pep talk and think of good things being just around the corner.
I realized this morning that yesterday was Natalie's due date and I managed to get through the entire day without making the connection. While I was holding her yesterday the full term baby next to her (just in for the day) was screaming, eating from a bottle and burping. Nice normal newborn things. Wonderful to see yet so bittersweet for me right now. I had the hardest time keeping my tears in check watching this thriving baby while I was carefully holding Natalie's breathing tube just right in an effort to bring up her O2 sats. Sometimes it hurts too much to be reminded of what could have been.
Let's think of a happy thought.....yesterday I put socks on her for the first time. She looked adorable and now I am wishing I took a picture of her feet. I did take pictures of her bundled up and sleeping after our snuggle. She was tuckered out.