Belle Update: June 10

Arabella's breathing was much better today. You could tell by looking at her.

The diuretic definitely helped her lungs, but this specific brand (called Lasix) inadvertently eliminates her calcium, so she was switched to a different brand today. Belle's bone condition is another factor that needs to be taken into consideration.

There are a lot of things at play. Mom and dad are just trying to keep up. 

Lungs, sugars, and bones - those are the top 3 immediate concerns at this time. To add to the complexity, each one can influence the other, and the balance is always shifting. Sometimes the balance is thrown-off, like yesterday. 

We spoke with a doctor about all of our concerns. We talked about the side effects of the drugs that she's taking, and wanted reassurance that this route is the safest and most trusted to ensure Belle's well-being.

It's a lot of stuff to wrap one's head around. 

She's gone through so many various drugs, and we have our reservations about each one. Sometimes we just can't avoid them.

Arabella continues to have the odd low sugar and it really puzzles the staff. Every second day she has a low glocometer reading, and that usually results in more drug dose increases, more side-effects, and more check-ups.

Mo' drugs, mo' problems.

There have been so many other things happening lately, but I can only write so much without boring you guys. Everyday there are joys and successes, and everyday there are low points too. We take the good with the bad, and repeat the next day. 

It's exhausting. I don't acknowledge just how grueling this journey can be sometimes, but it's because I'm afraid that people might think we're complaining. I want everyone know how grateful we really are. I want to inspire, and not depress.

Some days there's no hiding it, though.

When our anxiety starts to build there's only one solution. Spend time with her and hold her close, and that's exactly what today was about 💗

Yesterday the staff moved Arabella into a different room. She's too big for the 'preemie room' now, so we've all changed our scenery. 

Belle has a sweet corner spot with a view looking out into the atrium. Let's call this a promotion, shall we? 😃