Last night was one of those reminders of just how quickly things can change around here.

I was sitting on the floor playing with Sabrina, watching her happily scoot around, when I noticed blood on one of the flowers on her onesie. At first, I couldn’t figure out where it had come from. Then I realized it was coming from her central line.

And just like that, we were headed to the ER.

We are so thankful for the people who were there to help us, but the ER is also a hard place to be with a medically complex kiddo. Sabrina’s line and continuous milrinone are things her regular team and home care nurses work with all the time, but they aren’t necessarily everyday things in an emergency room. So there was a lot of advocating, asking questions, and making sure everyone understood just how important that little line is.

They were able to repair her line rather than replace the whole thing. Then we had to wait several hours for everything to fully set before we could reconnect her milrinone. By the time we finally made it home, it was around 3 a.m.

Today, we had one of our home care nurses come out to look everything over again and make sure we felt comfortable with the repair and her line moving forward.

Thankfully, Sabrina is doing well. 💜

It’s strange how you can go from sitting on the floor watching your baby happily scoot around, to staring at a bloodstain on a flower, to spending most of the night in the ER. I don’t think we ever really stop being on alert. Even in the most normal, happy moments, there’s always this other layer of our life running quietly underneath.

But today, she’s home. She’s happy. Her line is working. And we’re going to catch up on some sleep, take a deep breath, and get right back at it. 💜