It's been a long weekend. Good news is they've dropped the blood draws to every 12 hours instead of every 8. They took out the IV, for now. And we've been able to make her laugh and smile each day.
Bad news. She weighs almost a pound less than when we brought her. She's burning a ton of calories screaming and crying. Next poop we will test for allergies.
We've put the feeds through the tube on a pump that spaces the amount out over an hour and have lowered the amount given and increased the frequency and that seems to be helping with the vomiting. She's still having some vomiting but much less so we are hopeful we can start some weight gain today.
Next steps are to sort out getting her to take it orally but we can even do that with outpatient therapy.
She will be going home with the feeding tube and may have it for a couple of months while she catches up in weight. Angelica and I will have training on how to do all the things with it this week.
So sorry you are having such a problem. She knows you love her. Praying for you all. We hurt when our children hurt.
Praying for your sweet baby girl!
Much love sent your way, this little one is a strong and fearless fighter and she has two equally strong women who love her to the moon and back, stay strong, we are all praying for you.
It sounds like forward progress and the fact that you have a plan and will be going home is awesome! You love her and she knows it-those beautiful eyes and that sweet smile says volumes…
Still praying! Hang in there.🙏🏾 -TRobinson