Sorry for the lack of updates. Admittedly, I have grossly underestimated how much time we would actually have once we got home. For the meantime, we are making sure there are eyes on her 24/7. This means that I take the late shift and stay up until 4:00 am in the morning, until Kelly wakes up. She then takes over until it's the nanny's turn. Rinse and repeat. This is also further complicated by the fact that I've had to work longer hours due to software rollout which affects our whole hospital. With that said, I think we're doing ok.
Her viagra is now down to once daily, as opposed to four times per day. In about two weeks, she should be off it. Her breathing is still in issue, but we know that this would be a long term thing, so we'll just be patient. She has been pulling her cannula off but she doesn't desaturate as quickly and as bad, so that we would like to think that her lungs are getting stronger. Once she starts to gain more weight, she should theoretically grow new lung tissues also.
Speaking of weight gain, that's our main focus at the moment. It's sort of a catch-22, because in order to grow new lung tissues she needs to drink more milk. However, the reason why she doesn't drink as much is because she easily gets tired from drinking because her lungs still haven't matured as much as we would like. See where this is going?
We've tried putting her on a concentrated formula which packs more calories per volume, but that problem with that is it hurts her belly and makes her fussy from the bloating. We can't give a lower concentration because she would then need to take more volume, but that makes her tired. So... we have to find a happy medium for her. We are making a milk that is more concentrated, but barely enough so that it doesn't make her tummy hurt. With that said, I think we're on to something. =)