Yesterday we got to do something that we haven't been able to do since the day Blaise was born: We got to hold her without any lines.
Post-op, a big question is whether we can get Blaise to the point where she needs either less IV nutrition (fewer hours a day/fewer calories delivered by PN) or if we're lucky, none at all. Before we do too much work trying to decrease her dependence on PN though, we need to make sure that she can keep her blood sugar under control without it. Since she was born, Blaise hasn't really needed to worry about that...her blood sugar was kept stable because her nutrition team kept it stable via the IV. Now, we have to see if her body can do that on its own.
Yesterday afternoon was an exciting first step towards figuring this out. Blaise's PN was shut off for two hours and her nurse did two blood tests to see how her blood sugar was doing (the answer was that it did quite well, nice and stable throughout). The extra-cool part of it all was that one of those two hours was a "bottle hour" during which her g-tube feeds are shut off and she gets her 8cc/hour from an 8cc bottle. With no PN and no g-tube feeds, we had almost a full hour of Blaise completely untethered. We could spin around, dance around the room, or go for a walk around the floor without the IV pole, and we did all those things...twice.
I have to be honest here. It was weird. I didn't realize just how much I'd incorporated the lines and the IV pole into my "body image" of Blaise. The only thing I can relate it to is the feeling I get early in Spring when I can finally go outside without a heavy coat. Maybe this is just me, but hanging up the winter gear usually leaves me feeling a bit like I forgot something the first day or two. This was kind of the same thing. I kept looking for stuff that just wasn't there...nothing to get tangled in, no need to worry about where clamps were or if I was leaning on a port, just a cute baby (who clearly didn't get what the big deal was).
Anyway, it was awesome. She did great, which also means now we'll be doing this routinely to start the process of trying to wean Blaise off of TPN. We'll be sure to keep you all posted as we keep finding out what she can do.
In other news, the weekend also saw Erin and I (with MUCH assistance from our friends Kate & Andrew) take a big step towards getting things ready for Blaise's eventual homecoming! Her nursery, which had previously been our "office" (or "room with random junk that the cats have taken over") now has a wood-laminate floor that is a lot more inviting than the grungy linoleum tile it's had for years. We'll post before-and-after pictures soon, but for now just trust me...it looks a lot better. It's hard not to be a little superstitious, so we're definitely pacing ourselves as far as getting her room ready goes. It's a funny trade-off: You want to be prepared, but you don't want to get too psyched up in case there's a setback (which there still could be). The floor really sets the stage for the whole nursery though, so many thanks to Kate & Andrew for helping us get it done.
OK, pictures to follow soon!