Belle Update: June 23

Her outfit today says, "Beautiful in every way" 💗

Arabella's doing well on her hour-long feeds. She eats every 3 hours, so she has a 2 hour gap between meals. We want her sugars to be stable during those 2 hours, and so far they've been okay. 

We'll see how things continue. 

Today she was up to 54ml of breast milk. They've been putting a lot of extra fortifiers and calories into her feeds lately. On top of her milk, she'll regularly get a cocktail of meds, and all of those liquids can add up to one very large belly. 

Eventually, the staff will attempt to put her on 30 minute-long feeds to see how her sugars react over a 2.5 hour gap. If her sugars are within a good range, they might be able to decrease her Diazoxide dose, and hopefully wean her from it slowly.

I swear, all these drugs are a pain. 

I'm staring to see Arabella get puffy again. It's very subtle but I've noticed it around her face. One of the many side-effects of Diazoxide is water retention. Excessive water is being stored in her body, and it actually causes her heart to work a lot harder. This is one of the main areas to watch and monitor while she's on this drug.

Another side-effect of Diazoxide is increased fine hair growth around the body. Yes, you read that right. Increased hair growth. All over the body. 

So not only can Diazoxide impact your child's heart and lungs, but as an added bonus they might eventually resemble Chewbacca. Awesome.

It's a temporary side-effect, at least. Hair growth is nothing to worry about, obviously. The extra hair will only last while she's on the drug, and hopefully she won't turn into too much of a hairball 😄

Sometimes you just have to laugh it all off...

After coming home we watched some of Arabella's old videos. We're shocked every time we watch those old clips of her in the incubator. They're wonderful reminders and memories. 

She was so tiny! She's really come such a long way...

What a blast from the past.