There has been a lot happening behind the scenes lately. We recently sought a second opinion from Stanford Children’s because, as long as there is a possibility that Sabrina’s own heart could recover enough to avoid transplant, we need to know that we explored it.
The frustrating answer is that in so many ways, her heart is trending in the right direction. But in the most important way, it still isn’t recovering enough.
Today’s echo was essentially stable, with some encouraging pieces. Her heart is becoming less enlarged for her size, the leakage from her mitral valve has improved from moderate to trace-to-mild, and her heart-failure marker, NT-proBNP, has fallen all the way to 46.
But her actual pumping function remains significantly decreased, with an ejection fraction around 30%. We still aren’t seeing the recovery in her heart muscle that doctors would need to believe it can completely recover.
That’s hard. There is always a little part of us hoping we’ll walk into clinic one day and somehow her EF will be 60 or 70% and this will all become a bad dream. Every echo showing essentially the same function has chipped away at that hope.
Her second-opinion cardiologist is having additional experts review her case, so we will always leave room for Sabrina to surprise us. But we are also trying to accept that she will most likely still need a heart transplant.
And at the same time, Sabrina is doing SO well. Her vomiting has decreased dramatically—from nearly every feed to once every few days. She has energy. She’s crawling everywhere, trying to pull herself up, laughing constantly, and even starting to explore food after months of feeding struggles. That is HUGE for us.
Our life includes nurses in our house, an IV pump running 24/7, medications, tube feeds and appointments. But it also includes Sabrina being home with her brother, playing outside, learning new things and becoming more and more herself.
Our focus is keeping her as healthy, strong and happy as possible while we wait for the heart that will carry her into her next chapter.
This life looks nothing like the one we imagined. But it is ours, she is thriving in the middle of it, and we are so incredibly grateful to get to live it with her.
