Today, we are getting ready to go to a new specialist—the GI doctor. And if I’m being honest, I’m a little nervous. GI issues are kind of the biggest, scariest thing in my mind when it comes to CDLS. GERD, G-tubes, malrotation…these are all things that are really common with the diagnosis.
We’ve been incredibly blessed that Dot hasn’t faced serious GI struggles so far, but there are still a few questions we want answered. Our larger medical team thought it would be wise to loop GI in and get care established. So, months ago—back in May or June—I scheduled the appointment. It felt so far away at the time. But now here we are, and that familiar spike of anxiety is settling heavy on my chest
Logically, I know this is probably not a big deal. But my experience with my sweet girl thus far has taught me that nothing ever really gets to be easy. And I know that is why I can feel my body physically bracing for something. There’s real truth in the phrase ignorance is bliss. Right now, in these last moments of not knowing, our reality is that nothing is wrong. Everything is perfect. And I’m praying that this is the truth that still stands this afternoon.
No one really talks about this—the anxiety of each and every appointment. The ones where we are just monitoring and checking in. Especially those. They feel almost like Russian Roulette— sitting there, waiting, bracing to hear whether this will be the time the doctor comes back with bad news.
These are the normal pre-appointment nerves. but today, there’s one more thing I find myself fretting over. Last month, when Dot was admitted to the hospital for a UTI, she was on fluids. By the time we saw our pediatrician afterward, the water weight was gone—but she weighed a little less than she had when we were first admitted. The doctor told us to watch her weight and make sure she was gaining again at a steady rate. Today’s GI appointment doubles as an official weight check.
When I tried to check her at home this morning, the number made me pause. Maybe she hasn’t gained what she should. Maybe she has, and I just don’t know what the benchmark should be. I also know she’s been teething, more interested in snacking and comfort than truly nursing, gagging herself with toys. We’ve also been experimenting with solids, and of course her normal coughing and throwing up phlegm and mucous drainage from her nose.…all of which makes weight gain harder. I avoided the scale because I didn’t want to spiral, but I also didn’t want to be blindsided. And now here I am—spiraling anyway.
I keep reminding myself: this will probably be okay. But that doesn’t stop the worry.
So much of my life these days is lived in the tension of both/and. I both worry about Dot and also trust that the Lord holds my daughter in His hands. Things are both getting better and still anxiety-inducing. This is the heart of faith in the frenzy. Life feels like a tilt-a-whirl I’ll never get the hang of—and yet, I’d choose this ride over and over again for the chance to have these quiet moments with my little baby girl cuddled into me.