Scary Heart Stuff

Cataleya had her 1st cardiology appt today since being home.

Right before we left California, Cataleya had an echo cardiogram to look at her heart and see how the 1st surgery was working. The Dr said her artery bands were tight and doing exactly what they should be.

We went to the cardiologist today expecting to hear more of the same- she's doing good now, and we'll start planning for her next surgery this summer. We went in and they did an EKG, echo cardiogram, and a chest Xray.

She was so good for all her tests!

After everything was done, I got Cataleya dressed and the Dr came back in the room. She said they need to do a heart cath very soon to get a better picture of Cataleya's heart. In 2 weeks, they'll run a catheter from my baby's thigh all the way up to her heart and pour dye through it to see which areas need to fixed and they'll prioritize those needs based on what they see. She'll need to go under general anesthesia and stay in the hospital overnight.

If the heart cath shows the Dr what they expect to see, they'll want to re-do the banding surgery that Cataleya had done in January. This means she'll be having an open heart surgery in late April/ early May, then another in August. The echo showed that her heart is still dumping too much blood into her lungs and it's making her little body work too hard to simply stay alive. The bands should be limiting that bloodflow, but they look too loose.

The Dr was so good at explaining what they want to do and why. She was really empathic to our nerves concerning general anesthesia and having Cataleya put on a ventilator for surgery. In the end, though, I believe this is the best course of treatment for her. I'm just hoping these are the only extra surprise surgeries we have. I don't want to be doing these in between "do-overs" and fancy leg tests after the other 2 planned surgeries. It's hard to trust someone else with your baby, and I thought I had a few months to prepare myself for it.

Now we wait for the hospital to call us with the date for the heart cath. The Dr said about 2 weeks, but sooner rather than later. I'm trying to remember to breathe in the meantime.