We learned a lot the two times we've gone home, and I wanted to talk about that a little:
Firstly, with Abby, going home does not mean that everything is ok or that it has all been fixed. It hasn't. Some things will never be fixed. I think it's important to understand this, because even though we'll be at home, we won't be taking her to church or out for play dates. We probably won't be taking her much of anywhere, other than medical appointments, until respiratory virus season is over. We want to keep her out of the hospital once we leave, and this is the best way to do that.
Secondly, going home requires a lot of adjusting. We will need time to relearn our home routine. Abby will be going home with quite a bit more than she did last time (longer feeds with fewer breaks, oxygen, a helmet, new meds, etc...), and it will take us a little while to get into a comfortable groove. Though eventually we would like to visit with people (we really do miss our lovely friends), it probably won't be for at least two weeks after getting home. Once we're ready to start hanging out with people again, we may ask you to do silly things like wear a mask if you're around Abby, and will most definitely attack you with hand sanitizer repeatedly throughout your visit. We know that this may seem extreme to some people, but this is how it's going to be.
Enough of that, we're not actually home yet!
This week Abby's been given a good bit of freedom. She's started having breaks from her feeds, during which she is taken off monitors. What this means for her is that we can take her on walks around the unit (sometimes even out of the unit briefly), and play with her on a mat on the floor (you know, normal, boring baby stuff)! We were given the go-ahead by Speech to start letting her taste purées, which has been a lot of fun, and are trying to get her used to the concept of baby-wearing - so far she haaaates it.
Abby playing with some her favorite people in the cardiac step-down unit.
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