Belle Update: May 19

Mom and dad are always ready with the soother. It's a necessity at times. One of us will usually hold it because if it pops out she can get quite angry 😡

Kiera and I call it "soos patrol" (soos being short for soother). Who's on soos patrol? Oh my gosh, did we lose the soos?

When Arabella gets too fussy we reach for her soother in hopes to calm her. If the soos doesn't work it's likely that she's uncomfortable. 

Sometimes it's out of our control, but we always try to make things a little bit better for her. We change her diaper, perhaps change her position, adjust the tightness around her mask - whatever we can do to limit the amount of discomfort she feels. 

The truth is that Belle is likely in constant discomfort, especially from the air pressure in her mask. It bothers her tummy and interferes with her feeds, making her feel continually gassy, cramped and constipated. For these reasons, the respiratory therapist lowered Belle's air pressure today. We'll see if she's up for the challenge. It's definitely a balancing act, but Belle will let us know what she can tolerate. She needs encouragement! 

Here's a quick view of some of the issues going on with Belle at the moment:

• Her damaged lungs are healing very gradually, and her oxygen needs are in the 28-30% range. 
• Based on her most recent x-rays, her various bone fractures are healing slowly as well, but still present.
• We're seeing continued dips in Arabella's heart rate and oxygen levels (apnea and bradycardia). 
• Her blood sugar is being monitored more frequently, and soon she'll be on a medication to help stabilize her sugars between feeds. 
• Her severe diaper rash and bum sores are still present, but healing. They were open wounds at one point, so it's getting much better. 
• Her morphine dependency continues to drop, and in a week or so she can hopefully scratch that entirely.

If we look at the big picture, we're so incredibly blessed to be dealing with these kinds of issues right now. There are so many difficult and tragic scenarios going on around us at Sick Kids currently. Kiera and I hear about it first hand. 

I don't know how some of these parents find the strength. One day I'll have to write a blog post about it. 

Thank you Lord for all the mercy you show us daily 💗