Natalie did get down to 16 on her MAP but then started to struggle. Wednesday and Thursday her O2 requirements climbed and ultimately reached 88% Thursday afternoon. This was a huge disappointment and very frustrating. We met with her doctor and the theory is that they moved on the MAP a little too quickly. In addition to that, not all the nurses were calling respiratory therapy for suctioning and position changes. The RT's can increase her MAP for a short bit during those times so that she does not lose ground. Any time she loses alveoli during stress/suctioning it takes a good amount of time for those alveoli to be "rerecruited" and useful again.
An order was written for RT's to be present for suctioning and position changes. In addition to that they asked that she not be moved more than every 8 hours.
Her MAP was increased to 17 and she recovered slowly. Saturday morning it was reduced to 16 again and she seemed to be maintaining her O2 levels. Today she is up a little bit again but I am hoping this is just due to agitation. She is quickly annoyed when she wakes up and notices the ET tube. It will SUCH a blessing when that can be replaced with a trach.
Tummy wise she is doing well. She continues to impress us with her dirty diapers. Seeing as she has not eaten in weeks it is a wonder where she was hiding it all. The standard protocol is to wait ten days following the first good X-ray before starting feeding. She is on day 6 or 7 so if all continues to go well she will start feeds later this week.
We have reached a time where even more patience is needed. The doctors do not say "when" she gets off the oscillator but "if." Living in this limbo is draining in ways I can not explain. We have not been able to hold Natalie in weeks and I am really feeling the loss of all the normal mothering I would be doing right now. I just want my baby.
I am trying to find new ways to approach this wait and new ways to manage the stress. If anyone has some good advice for living life in a prolonged state of survival mode I am all ears.
Annie is doing well. She started preschool last week and loves it. I am grateful for her to have a place to go that is just for her. There are two little girls coming to sibling watch at the NICU now and she is really starting to open up around other little children. It is so sweet to watch her play and make tentative steps toward friendship.
Thank you again for your continued support. We certainly can use all the good thoughts and prayers we can get.