It’s been a little while since we’ve shared a big update because we’ve been living in the in-between.
It’s been about six weeks since Sabrina had her G-tube placed. We were hopeful it would solve the constant vomiting, but it hasn’t. She still throws up almost every day. We’ve gotten very good at doing laundry, changing outfits, cleaning feeding supplies, and trying not to let the frustration get the best of us.
Despite all of that, she’s growing. She’s gaining weight, getting taller, and continuing to make little developmental strides. Those victories matter more than we can say.
Today was another heart clinic day with labs and an echocardiogram, and overall, it was a good appointment. Everything continues to look stable, and there were even a few measurements that looked a little better. Her ejection fraction (EF)—one way of measuring how well her heart pumps blood—has gradually increased from about 21% in April to 28% in June, and 34% on today’s echo.
As encouraging as those numbers are, our cardiologist was careful to remind us that one echocardiogram never tells the whole story. Different imaging angles, different sonographers, and even the way measurements are traced can cause some variation from one study to the next. What they’re looking for isn’t one good number—it’s a consistent pattern over time before calling it true improvement.
That said, today’s echo isn’t the only encouraging sign. Sabrina’s BNP—a blood test that helps show how much stress the heart is under—has continued to trend in the right direction as well. This past week it reached 91, the lowest it’s been since her diagnosis. We’ll gladly take every bit of hope we can get.
One thing we learned today caught us completely off guard. Over the past month, Sabrina has come up twice for potential donor hearts. One heart reached her medical team, but they ultimately decided it wasn’t the right match for her. Another time, she made it much higher on the list before the heart went to someone ahead of her.
After months of life feeling like it was standing still—running tube feeds, cleaning up vomit, doing laundry, and trying to create as normal a childhood as possible—it was emotional to realize that, behind the scenes, things have been moving all along.
At some point, something is going to change.
We’re still hoping for a miracle. Maybe Sabrina’s own heart will continue to recover in ways no one can explain. Or maybe the miracle waiting for her is the gift of a donor heart. We don’t know which path lies ahead, we just keep holding on like hell to hope.
Thank you for continuing to follow Sabrina’s story, cheer her on, and send your love. Whether it’s a prayer, positive thoughts, crossed fingers, or simply keeping our sweet girl in your heart, every bit of support means more to our family than we could ever express.
