Here's how this all came to pass. A couple days ago, we found out there was an opening in the Level 2 nursery (in Sick Baby Land, a Level 2 nursery is between the newborn nursery and the NICU, which is Level 3). Bonnie's been a Level 2 baby for awhile now, even though she's been in the NICU the whole time. She's not critically ill and doesn't even have an IV anymore. Just learning to eat and get off some drugs. Anyway, a space came open in Level 2 and there was some discussion about whether it would be a good idea to move Bonnie there. I've never been there to see for myself, but I hear it's quieter and more roomy. Indeed, there has been a lot of hustle and bustle in Bonnie's little corner of the unit lately, and the prospect of a quieter space was appealing.
So. That day we had a discussion with Dr. J (love her) about whether moving to Level 2 would be a good plan. The sticking point was that if Bonnie ends up needing a G tube, she would likely have to go back to the NICU following that surgery (might still be on the ventilator for awhile post-op). Going to Level 2, only to go back to NICU a few days later, didn't seem worth it.
So *then* we had a very long talk about going home with a G tube (requires surgery but more stable) versus an NG tube (no surgery but somewhat more risky). I won't get into all of it, but Jonathan and I have pretty strong feelings about giving Bonnie a chance to learn to eat before we offer her up to the surgeon yet again. Everyone agrees that babies do better at home than in the hospital, especially when they get to be a little older (like Bonnie) and are aware of everything going on around them. It's overstimulating. All kinds of alarms going off, people bustling all around, getting woken up and messed with *all day long*. Anyway, we want to give her a fair shot at learning to eat, and we want her to do it in an optimal environment.
Dr. J called up the surgeon, and she must have caught him in a charitable mood, because he said that he'd be willing to send her home with either an NG or a G tube. So what *that* meant was that if we went the NG route, the only thing standing between Bonnie and sweet sweet freedom was getting off her Ativan. Well. She's on track to have her last dose of Ativan tomorrow (Sunday) night. Then they want to watch her for a couple days to make sure she does okay without it. They also want to make sure she's gaining weight.
The long-term plan is to go home with the NG and give her the month of September to learn to eat by mouth. If that doesn't happen, we'll come back to Charleston for a G tube. Obviously I hope it doesn't come to that, but if it does, at least I'll know we gave her a chance.
The Bonnie update is that she's still not interested in eating by mouth really at all. In fact, the past couple times we've tried, she gets *really* ticked off about it. We're giving her a break for a couple days to reset and will try again on Monday. She had another swallow study yesterday, which showed that she has gotten better about protecting her airway when she swallows. Hopefully we'll be able to stop thickening her milk, because her speech therapists feels like that little bit of extra texture is contributing to her gagging, which then contributes to her not wanting to suck from a bottle.
I think I'm still in shock about going home in a few days. I'm thrilled, but there is a *lot* to do between now and then. We've been living three hours from home for close to three months now, so we have a lot to pack up. Also a lot of follow up appointments to set up, training to receive, equipment to learn, etc. Please pray for what's left of my mental and emotional faculties to get through these next few days. And please pray that everything goes according to plan and that we can take our sweet girl home on Thursday.
Some pictures, of course:
|I love this picture. That's my dad holding her.|
|Yet more cuteness.|
|Sleepy girl rocking the leggings.|
|Up to no good.|