She's such a sweet girl.
Arabella had another low sugar at 3am last night. Luckily it wasn't too low. As soon as she's fed her sugar levels skyrocket, so we might have to feed Belle more frequently. It's the only way to combat her periods of low sugar without resorting to drugs.
She'll be fine as long as she doesn't have to go back on the sugar meds. The Diazoxide would put her back a few steps with her breathing, and it would worsen her pulmonary hypertension. That drug is the absolute worst. It wreaks havoc, and we've seen it first-hand.
We're getting closer and closer to being discharged. In the next week or two Arabella will be moved to Pediatrics. It's on another floor at Sick Kids. Once there, we'll start to prepare for the transition home.
When will we be home? No one can give us a true timeline or estimate. It's all up to Arabella. My best guess is 4-8 weeks, but don't take my word for it. We'll just have to wait and see.
When we're finally home, it might be a juggling act with her feeds, meds, bone supplements, diuretics, and whatever else, but if it means getting her home, we'll take it. If we need to, Kiera and I will schedule shifts to feed her every 2 hours during the day and night, for example. We'll do whatever it takes.
So many things are still up in the air right now. Let's just take it one day at a time, shall we?
There's no sense in getting too anxious about the future. We've had a lot of good things happen lately - and we should celebrate that. Everything will come to us, as long as we're patient. In the meantime, we'll continue to enjoy our time together.
We just can't get enough of this girl!
Arabella is such a sweetheart and her facial expressions are priceless. She looks really alert and interested in the world around her! It's such a miracle given her extreme prematurity!!! You are doing such a great job as parents and your instincts to feed her more often and avoid drugs are so right! Just go with your heart!
ReplyDeleteThank you Agnieszka! It's such a battle with these drugs, and they're not always the answer! Despite everything, Arabella is a miracle, like you said, and we need to be thankful for every day we get to spend with her. Thanks for your lovely comment! xxxx
Delete