Today marks 100 days in the hospital. One hundred days of monitors, beeping machines, and trying to keep our heads above water, our hope over our fear. It’s staggering to even write that number. 

I know this update is long overdue. We’ve been doing our best to settle into a routine—trying to find pockets of joy for the kids and simply getting through each week. Most nights I think, “I should write an update,” but then I start thinking about all the medical terms I’d have to explain, why I’m celebrating something that seems so small, and suddenly the task feels overwhelming… and before I know it, I’m asleep.

To put it bluntly, we’re in a hellish waiting phase. We’re planning for a year in the hospital, but there’s reason to hope our wait may be shorter. In the past week, two hero hearts became available. Sabrina was 5th in line for the first, but the size wasn’t right. For the second, she was 9th in line—this one would have been a good fit, but it went to another child higher on the list. We are so happy for that little girl. The emotions that come with each of these notifications are impossible to describe—so much hope, and so much anguish all at once. Still, it’s reassuring to know that if the right heart becomes available in our region, Sabrina is near the top of the list.

On the other side of this story, we continue to hold hope for recovery. About a month ago, Sabrina started a new medication, and her labs have shown small but steady improvements in how her heart is functioning. Her echocardiograms are now every other Monday, and her most recent one showed slight shrinking in the dilated left side of her heart (a good thing!), less mitral valve regurgitation, and a higher ejection fraction—meaning her heart is pumping a little more efficiently, though still far from normal.  These improvements were tiny…but any improvement is worth clinging to.

So we keep on. We keep hoping, and waiting, and praying. And we keep celebrating every little win along the way.