In the CICU - How We Got Here

Hi everyone -

First, thank you all for the huge outpouring of well-wishes, offers of help at home and prayers. We truly appreciate it.

This is a blog I never - ever - envisioned writing. But, here I go...

We learned, rather suddenly, Friday that Ali has a pretty serious heart condition. The term is dialated cardiomyopathy. In laymen's terms, it means part of her heart - in her case, the left ventricle - is enlarged and therefore cannot pump as effectively as it should. Alivia had been on a decline for about two weeks prior with what we thought was reflux and an upper respiratory infection. We also learned at her 6-month checkup that she had fallen off the weight curve. We assumed this was due to the reflux. Fortunately, her ped ordered a chest Xray to rule out other complications. The final report showed an enlarged heart. We started working on getting an echo scheduled for her. The earliest was Aug. 27, which was not quick enough, in our minds. So I began to get help at work (fortunately for us, I work at a hospital) and the ped's nurse began making calls on her own. I won the race, and thanks to some tremendous coworkers, we got Ali in that same day.

What happened after that is frankly a blur and a memory I don't want to relive. Doctors rushed in, calls got made, people from the ER showed up. The next thing we know, our daughter is suffering heart failure and needs to be in the cardiac ICU in St. Louis. They even talked about air lifting her, but once she proved to them that she was fairly stable, an ambulance from Children's Hospital came to get us. We got here around 8 or 9 on Friday night, went through another whirlwind of tests and so forth, and poor Ali got so many lines put into her, it was a harsh reality to face.

She's been stable as far as we understand. Some meds are helping her heart pump better so her body can rest, and we've used some diuretics to release excess fluid. She's breathing easier and finally beginning to eat better. She still gives us smiles and plays with her toes, and the docs are pleased to know she's met all her milestones (minus the weight thing).

We also are now learning that, while she compensated pretty well these past few months, there were signs we had noticed but didn't know where to pinpoint them, so it's like a big puzzle is coming together for us. This is why she's been grunting, not eating well, coughing so poorly and other small things. What we still don't know is why she has this - my guess is it's congenital - and where we go from here. It's going to be a long road. And while we don't want to be here, we are lucky to be where we are at, with great docs and nurses to care for our girl.

Tomorrow, she'll begin undergoing more invasive tests to seek answers to all of this and will need to be intubated for them. I ask that you keep praying for her, especially that she tolerates this testing and tubing tomorrow.

Thanks to all!