Boy, did we need a vacation. For almost a solid week I just enjoyed my family. I remembered how fortunate I am to have a husband who loves me, a daughter with a smile that crinkles her whole face and the means to get out of town to watch baseball and explore a new city and I did not cry even once. After our good evaluation I ignored all the scary "what ifs?" in my head and just concentrated on the moment. That’s hard for me. And we’re not on vacation any more.
Today, instead of the daunting task of heading back to work we faced the even more daunting proposal of taking Josie to see a Medical Geneticist. I warned Tim before we went that we would have to have a thick skin during the evaluation. Geneticists are trained to find badness, and lump physical findings into syndromes, and it is their job to say mean things about babies. I was prepared for the ear measuring and the nose appraising. I wasn’t prepared to take it so personal.
As a quick overview, we took Josie to see genetics to help find a reason for her hypotonia. We already are seeing a neurologist to look for brain causes, and geneticists are the people who look for connective tissue disorders and errors of metabolism. The doctor today was concerned enough about her findings to order six tubes of blood and an echocardiogram. I know she was being conservative and thorough, but I didn’t expect to be so hurt by her ordering tests to evaluate for syndromes that I know that it is terribly unlikely that she has. It turns out, I was the one who needed a thick skin. Tim was fine.
Our problem is that Tim and I have the same goal- that Josie is healthy and happy. We just have different approaches. Tim is in the Test! Test! Test! camp. I’m the exact opposite, because in my experience shotgun medical testing just tends to turn up random findings that complicate the picture and lead to more tests and more worry. For instance, by ordering an echocardiogram there is a very small chance we will find that her heart murmur is part of an undiagnosed connective tissue disorder and a very large chance that it is just a regular old benign murmur. However, there is also a fair chance that the echo will show some small, not really concerning, abnormality that we will have to keep and eye on and worry about forever. It’s a cycle I didn’t want to start.
I’m back to feeling down, and scared and overwhelmed by the whole process. In the next month or so, Josie has appointments for orthotic casting, Neurology and Genetics follow-up, echocardiogram, her regular pediatrician (for her ear infection that has not cleared after two months of antibiotics) and weekly physical therapy. The bloodwork to rule out Terrifying Syndrome(s) won’t be back for weeks. Possibly being a doctor myself makes this harder, because I see the whole sequence playing out more clearly, and I also think it likely that other physicians are also treating my daughter more aggressively and conservatively because of her doctor mother. Or maybe it makes it easier, because I understand the process of it all better. I don’t know. I just know I’m worried about Josie almost every second of the day.
Speaking of thick skins, at one point during today’s appointment the doctor looked at me and said with genuine concern, "You’re not pregnant now are you?" It was obvious that the prospect of the two of us bringing another imperfect child into the world terrified her, and the words felt like a slap in the face. I’d have another Josie in a minute, so we’ll just have to disagree on that one.
