Today was the day I decided to say even though you are the doctor, I am the mother and sometimes I feel I know what is best for Annabel. They came in with their plan and I listened. I told them I understood that was their plan for the long term but that I wanted to focus on getting Annabel well in the short term and healing her gut the best way possible with the long term in mind. They kept telling me their ultimate goal was to see if she could come off TPN/Lipids and again I understood. But then I ask to speak and started with the fact that I am not medically trained or educated but that my gut is feeling like we need to stop TPN today, as in now. Before when Annabel was sick they would put her on IV's for hydration and she would be on that till she was well enough to eat. Sometimes she wouldn't eat very much, but she survived and eventually ate more. So yesterday after surgery again they began the feeds (20mls. breastmilk and 20 mls. pediatric compleat) every 3 hours including through the night. She shows some signs of discomfort but I am interpreting them as just fullness maybe that she isn't use to. She has not begun the retching/gagging that lead us to not feed and began the TPN dependant phase of her life. Now Annabel has been vomiting until yesterday but felt that was the infection/after surgery thing. So all night no gagging/retching and nothing when she is vented. So every 3 hrs. we give her a feed over a 20 minute time frame. Today they upped this to 30 mls. breastmilk/30 mls pediatric compleat over 30 minute period every three hours. Her tummy is obviously bigger than before but she doesn't seem that uncomfortable. Her fevers today are 100.4 and now down to 99.0.
There still are no sensitivities to the yeast as of yet. She has one clear culture but they can't really call it clear til there is no growth for like 72 hours or more, but I am going with it and calling this one day closer to going home.
My thinking about the TPN dependant vs. the feeds are that yes, she may have some issues with being comfortable with the feedings but with the central line she may not survive another infection according to the doctors. I realize yeast is serious but she pulls through each time. She may continue to fight these infections but I don't want to risk it any longer. Also her in the hospital they can't put her a central/PICC line as long as yeast is growing in her body. The TPN/lipids is eating away at every IV they put in so for now I requested take her off, just give regular IV liquids and push through with the feedings.
She slept forever this morning and we were a little concerned could she be getting sicker, but she awoke we bathed and then we took her to the playroom. We took her for a few spins in the car and she smiled so much (maybe not for the picture, but trust me she is so much better than this past week.
Thank you, thank you for your prayers. So many people are pulling for Bella and sending prayers her way. Thank you isn't enough but please don't stop for the new plan to really not go back on TPN. My thinking is that if this doesn't work and we have to then we can put a central line back in. But for now I am not saying we are TPN depandant and it feels so good.