Big Rob and the Three Girls: Finally Home

We're Home!

After a long day of learning how to take care of our child, and waiting 3 extra hours for her prescriptions, we finally made it home last night. I have to say it was pretty overwhelming to get home, unpack the necessary things and to get all of her food pump stuff and medications organized. Once we made a list of what meds & food need to be given when, it's made it much easier to deal with! Otherwise, everything else has gone really well. Mya threw up twice last night, she's been doing it almost every time she wakes up from a deep sleep. She has so much mucus in her throat, she starts coughing really deep, causing her to throw up. Needless to say, that's the only negative right now (plus the formula she's on REALLY stinks). I'm really looking forward to her first bath tonight, we have to wait to have Rob's hands too, since I don't trust her strength of sitting alone right now. She has had a really good day, we've also weaned another step down on her meds, and no visible signs of withdrawal. Thank God. She's been awake a lot today, playing with birthday toys, books and gifts people have sent our direction. They've been awesome! It's so fun to see a normal little Mya. She even scowled at Rob today! It was great! She's been able to sit for a much longer time today on her own, and she tried a couple of times to crawl, but has learned her body doesn't want to work very well yet. We were also able to bring home a foam wedge that she can have in her crib and on the living room floor for nap time. It's working out really well. I'm not sure how easy this feeding tube will be to keep in her nose once she realizes how to take it out. I'm pretty sure the day is coming soon! We have an appointment next Thursday for a swallow test for Mya, back at Children's. This is the next thing we're praying for. They're going to give her a drink of her normal formula, but will put some dye in it and will track how it's being taken in. This is a benchmark time, because if she's not able to swallow thin liquids (which will be the most difficult for her, viscous liquids will be easier), then she'll have to stay on the feeding tube possibly a month or two longer. That would be a big bummer, as I'm pretty sure the daycare wouldn't be willing to manage such a difficult schedule. So, it could require a shift in lifestyle for a while longer. However, I'm praying that we don't have to make any different choices!