We have now spent three weeks driving 51 miles back and forth to the hospital pretty much every day. We're getting closer to the end on that, but we're not there yet, and so it continues. My online time has been cut considerably, between driving and trying to keep Acorn occupied in our corner of the PICU - no doors, no walls, so I can't just turn him loose.
The dishes are never caught up. The laundry is never caught up. There's never enough time for Leaf, and never enough time for Acorn, and never enough time for me or for spouse and I as a couple.
Which is not to say I'm not writing - that's basically mandatory for sanity. It just means that writing is in fits and starts with interruptions, and that other things are suffering because of it.
Tomorrow is our meeting with the vent team to get Leaf out of the PICU and onto the vent unit; after that, they're anticipating a week, or maybe a bit more, before we can go home - it's just a matter of lining everything up.
This is good....we're almost out of frozen breastmilk, and I'm not keeping up with her by pumping, particularly when I don't get the good long skin to skin snuggle sessions we had in the NICU. Hopefully we can track down enough donor milk once she's home (the hospital forbids it) to keep her off formula for a bit longer; if not we'll supplement with some crazy high-cal formula that the hospital has lined up for us.
She's probably coming home on continuous feeds. At the rate we're going, we'll need a second feeding pump, as we switched to j-tube feeds (a feeding tube that is inserted past her stomach, so food completely bypasses it) because of medication induced nausea and slowed gastric emptying, and transitioning back to all g-tube feeds (into the stomach) is a very slow process for Leaf. After we get all the way to continuous g-tube feeds, we'll also have a slow transition back to bolus feeds (ie, X ounces in 15 minutes or so every few hours, rather than a continuous drip), because she's been on them so long.
And now it's late, and I should sleep. A friend is keeping Acorn tomorrow so we can go to our meeting - Acorn has the sniffles, and the hospital will not let him in that way, so it's find a sitter or one of us skips the meeting, and we likely lose our spot on the vent floor, because you have to have the meeting, and both parents need to be there. Sigh.