It's taking Bella over an hour to drink a bottle. Her mouth is sooo beat up inside right now. She either screams in pain, rejecting the bottle, or, if we put in the pacifier, she falls asleep instantly, and doesn't generate enough force to suck even through the Haberman nipple...supposedly the softest, easiest flow nipple out there. Please pray that her mouth heals enough for her to simply eat.
Second, we got our list of to-do's from University of Minnesota to get the ball rolling for the BMT clinical trial. It's quite a laundry list, but that's okay. It's gonna take a few days to get it all together. Starting Monday, I scale back to only 2 hours a week of direct service so all things Bella can take center stage.
However, the whole BMT eligibility hinges on whether or not Ali is a sibling match with Bella. Again, I can't see, given the Providence through this whole journey, how they couldn't be, but please focus your prayers on:
1) healing the mouth
2) perfect sibling match (think 10 out of 10)
3) more milk
Ang's milk continues to dry up despite trying every suggestion and supplement known to womankind. The only bright side is that we use pure alkaline water with the Nestle Good Start formula, so it's as good as a substitute could be, but it's really no substitute at all for the real thing.
Bless her heart, despite the current feeding challenges, Bella is sweeter than ever and pretty much sleeps through the night for the most part. She is in sleeping with Ali every night now, and we usually have to get up maybe once to re-wrap her or occasionally feed her, but it's getting better in the night time! YAY! Thank GOD for little victories!
If you are still here, just type a quick note letting us know. We have the feeling (which is both understandable and natural) that most have left this site. We're usually pretty strong, but today really sapped us. At one point, I watched as Bella's top lip lifted off her mouth and peeled away with the bottle as I was gently pulling it out during a scream. I don't care who you are, that leaves a mark.
Last thought should be a good one, so here goes: :)
Yesterday, when I was on the phone with Tim Krepski at U of M, he winced when he heard we had Cigna for insurance because they have had trouble getting Cigna to play nicely in this trial. Just a couple of weeks earlier, we found out the Ang's employer is switching from Cigna to Blue Cross Blue Shield during the next open enrollment. At first, we were scared, so much of Bella's care has been covered so well up to this point. How could BC/BS be any better? or so we thought. Tim said BC/BS works much better with U of M...who knew?
God, baby, God.
Good night and God bless.