The last week has been rough.

Sabrina had been eating so well—finishing her bottles, keeping everything down—and then, out of nowhere, she started taking a little less each day and dribbling a lot of her milk. By Saturday evening she was vomiting after feeds. She had a scheduled echocardiogram on Monday, and while it showed no real changes to her heart, the team doesn’t believe the vomiting is heart-related. She may have picked up a stomach bug, even though nothing showed up on her viral or respiratory panels.

Today we’re slowing everything down for her—letting her eat only when she feels up to it, not pushing anything, just soaking in the snuggles and letting her watch as much Miss Rachel as she wants.

The other hard part this week has been transplant-related.
Our team told us there has been pushback about continuing to certify Sabrina as a 1A. For quick context: Sabrina was granted 1A status based on an exception because the Ventricular Assist Device (the VAD her doctor would use if she ever needed it urgently) is in national shortage. Because of that shortage, she qualified for 1A without having a device placed. But her case gets reviewed every two weeks, and there’s a growing expectation that she may be downgraded to 1B since, thankfully, she hasn’t needed the VAD.

This is such a painful, impossible place to sit. On one hand, we’re grateful she isn’t sick enough to need a device. We want to avoid that if at all possible. On the other hand, not being “sick enough” to remain 1A could mean a much longer wait—months, maybe years—which is unbearable to think about.

Right now we’re just waiting for the board’s decision. Whatever it ends up being, we’ll process it when it comes. For now, we’re holding onto her, watching her closely, and taking this day by day.

Please keep us in your thoughts.
This stretch has been heavy, and we’re running low on strength. Knowing we have people thinking of Sabrina and rooting for her truly helps us get through these days.