Monday means another echocardiogram.

Today’s ejection fraction came back at 24% — “no significant change.” On the one hand, I am so tired of those three words, because they mean Sabrina’s heart still isn’t improving. But on the other hand, we’re grateful: she’s gaining weight (just look at those cheeks!), she’s drinking most of her bottles by mouth and taking the rest through her NG tube (the least invasive option), and most importantly, she hasn’t needed any mechanical support for her heart. If she can continue this way, we may be able to get her to transplant without any additional surgeries.

In the midst of all this, we’re trying to keep life as normal as possible for her. I’ve made it my mission that she gets outside every day. It sounds simple, but when you’re hauling the “Tower of Power” (our giant IV pole), a portable heart monitor, and a nurse to oversee it all, it becomes a whole production. Today, our nurse finally got permission from the doctor to let us go outside without an escort — and we skedaddled out of there so fast! Here’s a picture of me and my girl out in the wild, soaking up the fresh air. 

Leg in the air like you just don’t care. And yes, those are leg warmers. 

Also – she’s generally all smiles, but teeth are happening!

#SabrinaStrong