On Wednesday we had our first appointment at the children's hospital--the first of many, I might add. Kenna volunteered to go along as my set of extra hands, and I was grateful for her cheerful company as well as her willing help. It was a cold, rainy day, with poor visibility most of the way, always a joy when driving someplace new. Thankfully the free valet parking eased the stress a bit, allowing us to find the orthopedic clinic with a few minutes to spare.
|Verity's clubbed feet the day of her birth|
Well. I guess I should have done my homework prior to this appointment, but it actually did make sense that treatment would be easier and faster if we work while Verity is still newborn. In fact, Ted and I had thought in the beginning that intervention while her bones were still more pliable would be what the doctors would suggest. It was just a shift when we were thinking that nothing would happen before our move this summer, let alone immediately!
I called Ted at work to run it by him, and he said to go for it if I was okay with it. WAS I okay with it??!
I thought I was. It helped that Verity did very well on the table while the doctor quickly but tenderly worked. Verity had the hiccups, and she just lay with her eyes as wide open as can be (which for her isn't very!), looking around and shaking each time a hiccup came. She didn't fuss at all, which helped me feel that this wouldn't be so terrible.
But then the casting process continued right up her little legs! The doctor explained that the casts would just fall off if they only covered the feet or even just the lower legs. So, all the way up to the diaper line they went. A bit of smoothing and common sense reminders (sponge baths only, no signing or decorating the cast until after 24 hours) and the job was finished. I was left awkwardly holding my baby, trying (unsuccessfully) not to rub wet plaster on myself or the car seat as we buckled her in. By this time it was close to feeding time, and Verity was no longer hiccuping nor happy.
We stopped by the scheduling desk on our way out; the process really doesn't take that long in the scheme of things...only one week per cast, with 4-6 casts total, depending on how well the adjustments are made. The process is known as Ponseti casting, with the series of casts bringing the feet around to a neutral position. At the end there will likely be a minimally invasive surgery to lengthen the tight Achilles tendon. And then another cast will probably be in place for I don't know how long. And then we go to boots and bar to prevent recurrence.
During the long (and still rainy) ride home, I heard Verity make noises I've never heard her make before. She wasn't exactly screaming, but she was clearly unhappy despite the feeding that was going on. Her noises sounded like a cross between grunts and moans. It broke my heart, as did the memory of trying to hold her with her clunky casts.
What have I done?!
That's all I could think of the whole ride home. The driving rain didn't help my emotional state any.
I did some digging and asked some questions of other Trisomy parents. The rational part of my brain assures me that we did make the right decision; we are setting Verity up for success down the road. Doing this sooner rather than later will mean a much shorter time in casts, though we will have to be vigilant with the boots and bar process.
The fact that we are treating her club feet now rather than later is even a good sign; other T18 parents delayed treating their children because they were in a fight for their child's life in the beginning and had to deal with all kinds of other health concerns or even surgeries. And this makes me feel a bit silly getting so worked up about the casts.
But I can't deny that it hurts my heart to see my sweet little babe half covered by these clunky, awkward casts. She will only be teeny tiny for so long; I already miss cuddling her whole soft self and playing with her little feet. I can barely see the tips of her toes now. I loved squishing her heels; the way her feet were formed caused her heels to feel puffy, almost like a big bubble from bubble wrap packaging.
The first night with the casts on was brutal. Neither Verity nor we parents slept much at all. Last night wasn't much better. But the days have been good; it doesn't seem as if Verity is in much pain or discomfort. And while the casts aren't any less awkward, we're learning how to manage them. Grandma and I gave Verity a sponge bath this morning, and she loved having her hair washed in the warm running water as we held her over the sink. And the kids enjoyed signing the casts...perhaps we can get more creative with her later ones!
So, all in all, I'm trying to reassure myself that we are doing the best we can for Verity, and while the casts aren't my favorite part of helping her, they are a piece of her own unique story, one that is being written completely with love.