One Year Ago: More Bad News and Some Good News

One year ago we were headed back to the hospital for the last time. This visit was to see what was going on with Lily's heart and organs. Kids with CdC can have problems as part of their disorder and so the doctor recommended a full work up. We spent most of the day in different hospital rooms watching Lily hooked up to lots of different machines waiting for a doctor to explain what the results to all of these different tests meant.

We found out that Lily did have a heart defect and that there was not much we could do but wait and watch. It was frustrating, not fully understanding what was going on with her health, but we did feel a sense of calm and peace about it. Some how this news did not cause me worry and so we moved on to the next set of tests.

We finally got some good news towards the end of the very long day, and we found out that Lily did not have any organ defects, it was nice to finally hear some good news. This hospital visit had not been nearly as emotional as the last visits had been, and it felt like a relief to know everything, to be out of the in between.

It had been a long few months and this was the end. The end of doctors, the end of tests, and the end of waiting.

Of course with every ending there is a beginning, and we were about to begin a new journey...