It seems the past week or so has been very uneven. She may be doing great in the morning and then struggling in the evening. The last few MAP points are a struggle. Yesterday afternoon she started in the 40's and by the time I left was in the high 60's. Afternoons like that are very draining. She has strong opinions on what she likes and does not like. The first major disruption was a change from being on her stomach to her back. She would not settle for hours until the nurse relented and put her back on her belly. The last big drop was typical Natalie-big desat for no apparent reason. Then we check her diaper and find that she is wet. There are things this girl is just NOT going to tolerate. I always say more power to her. She should give 'em heck. They always tell me how stubborn she is but I tend to think that is in her favor. A person would have to be very strong willed and stubborn to fight as hard as she does.
Well, she seemed to master a MAP of 15 at one point but it was short lived. They tried it again yesterday and she tolerated it for most of the day but climbed up in Os overnight. This morning she was at 74% and the neonatologist said "she's obviously trying to tell me something." The MAP went back up to 16 and hopefully she will be able to recover the ground she lost.
The neonatologist met with the pulmonologists today to get their perspective. They may attempt to move her to a conventional vent without having reached the low MAP that was the original goal. I sometimes wonder if, as a big baby, she is tired of the oscillator and wants to breath in a normal fashion rather than at 600 breaths a minute. There are some instances where changing a baby back to the conventional results in an unexpected improvement and I suppose that is what we are hoping for. At the meeting today they were going to discuss if there would be any value in doing a round of steroids to help her make the vent change. We will talk that over tomorrow before any final decisions are made.
Going back to the conventional vent means she will be less vulnerable to atelectasis (areas of collapse in the lung), she will be more mobile, will be able to wear clothes again AND she can be held when she is stable. This is of course the part that makes me jittery with excitement. It sounds crass, but I can only imagine this is what a junkie feels when they are about to make a score. My body has been in extreme baby withdrawal and I am going a little buggy waiting for my next "hit." I am trying to not get ahead of myself with excitement until the moment is close at hand.
Going back to the regular vent also means her lungs are more vulnerable to the damage that causes BPD, especially if they can not get her settings under control quickly.
It's a gamble, just like so many decisions we have made a long the way. In my heart I believe that if we can get Natalie to settings low enough for her to have a trach she will improve much more quickly. Being comfortable, being held, having her mouth free for normal baby things can only help her thrive. We just have to get there and the wait is torture.
In non-respiratory news, (drum roll please) Natalie resumed feedings today!!!! She had a new ND (nasodoudenal) tube placed and they are running very small amount of pedialyte through it. If she tolerates that then tomorrow she may start elemental formula (it is predigested-yum) or breast milk.
This is the time of year that new residents and fellows enter the hospital and I have to say it makes for some interesting conversations. I do feel for these people as they advance in their medical training but at the same time I really do not want people practicing on my daughter. Today on rounds there was a great collection of newbies and so the whole process was understandably slower as people are learning as they go. I give the neonatologist a lot of credit for her patience. When it came time to decide Natalie's new feeding protocol the fellow immediately started calculating large feedings as she is a "big baby." The attending said deliberately "she had surgical drains....she had NEC.....we are moving slooooowly." Thank God that the newbies are not allowed to run around by themselves until they have earned their independence.
Annie is playing blocks with Daddy and making a "foot castle." I believe that is a castle you can put your foot into. She continues to love school and is making friends. It is a blessing to see her doing normal little kid things and having a life outside of the hospital. I realized the other day that she has been going to the hospital nearly every day for over 5 months now. That is not normal for a toddler but she has adjusted beautifully. As long as Natalie is there Strong continues to be a second home for all of us.
We ask for prayers that Natalie recovers from the MAP change and that she handles any changes in the next week as smoothly as possible. As always we also ask for prayers of strength and courage.
Natty resting comfortably. The bandage is gone now and plastics has signed off on her pressure sore. It is healing beautifully.
One of Natalie's favorite nurses bought her some fancy socks. They are too darn sweet.
Natalie's new ND tube just placed today. Hooray for eating!!!! She loves to keep her hand up by her ET tube, a habit that makes us all very nervous. Normally her arm is positioned in a way to prevent her "helping."
This onesie was passed on by another little girl who battled the NICU and won. I think "one brave chick" sums up Natters pretty well! Thank you Emma!