It will probably be a couple more days before they take the tube out of Lexi's mouth and start continuous feedings (which will instead require a new tube in her nose. Great.). Her CBC is still abnormal and an infectious disease doctor came and talked to me, agreeing with the neonatologist that since she's doing so well and has no sign of discomfort, they think it may be due to the T21.
When talking to the neonatologist, I asked her if she had any estimate on how long Alexis would be there, even though I understand that there are a lot of unknowns. Her reply: "it could be a while." Not to take away from the fact that she's doing so well, but because her duodenum was distended, they "anticipate some complications." The feedings may have to start and stop several times and it could take a while before she's eating and digesting regularly. And they've moved us to a long term room. We're no longer out in one of the cubicles--we have a private room. It's nice, but I don't like the fact that we're considered long-term. I'm choosing to refer to the room as a suite. Makes me feel very "Fancy Nancy".
It get's really frustrating some days, but don't feel sorry for us. The people across from us have 4 children, 3 of which were born at 29 weeks. Another family lives 2.5 hours away. Compared to EVERY other baby I've seen, Alexis at her 5 lbs 3 oz is about twice their size. I can now pick her up on my own almost any time I want, unlike the parents of the premies who can only reach their hand into a hole on the side of the incubator. And Alexis is beautiful and comfortable, and so very loved.