Yep, we were clearing out some of Ella’s drawers and ran into her hat collection. So Kelly and I decided to try some on the Bun to see which ones still fit. She does have a face for hats and based on her expressions, I think she was enjoying herself.

This fun moment was after a fussy morning. Really, it started last night. She only saturated 93-95 last night on 1 liter. When Kelly weighed her this morning, she weighed in at 9.36 kilos. Last Friday, she weighed 9.09 kilos. That is an increase of .27 kilos, which is equivalent to an increase of 9.5 ounces in only a few days. That is typically a sign of fluid retention.

After Josh and I discussed, we noted that 2 weeks had passed since our ER visit and the last time she had Bumex. She does seem to be on this bi-monthly schedule of needing Bumex. So, we opted to give her Bumex today at noon. Then, she took a really long nap and woke up acting better clinically. We’re hoping for a restful night and even weight loss in the morning. So far, it isn’t looking too promising: tonight, she is only saturating 94 on 1 liter (about the same as last night). If she hasn’t lost weight in the AM and is not acting better clinically, we may have to give another dose of Bumex.

This just confirms that we really want to move ahead with the SVC procedure. We have not heard back from the doctors with an update, but hope to hear soon.

In the meantime, we try and treasure each day with Ella. Although it is the toughest job, we’re honored to be the parents of a true miracle.

Colossians 4:2 (NLT)
Devote yourselves to prayer with an alert mind and a thankful heart.