I spent the first five or six years of Big Man’s life waiting for the next shoe to drop. When you have a micro-preemie, there are lots of shoes involved. Because I felt like we’d escaped his early birth and subsequent NICU stay relatively unscathed (physically and developmentally), I was certain there would be plenty of shoes falling from the sky. We couldn’t be that lucky, right?
He was diagnosed with high muscle tone on his left side when he’d been home just a few months. High muscle tone can be an indicator of cerebral palsy, often a result of very premature birth. We used massage and physical therapy, and within a few months, the high tone was gone. He had a speech delay at 15 months. We used sign language, sang and read to him constantly, incorporated some speech therapy, and by 2.5 years, we were begging him to stop talking. At four, he was diagnosed with reactive airway disease, which became full-blown asthma at 5 years old.This wasn’t unexpected – there was damage to his lung tissue from the oxygen he needed to survive. It was still a big speed bump for us. He would go from zero-to-pneumonia within a matter of hours every time he got a cold, an allergy flare, or the flu. But then daily maintenance meds, and extreme vigilance became the norm. We tossed aside that shoe. At eight, he was diagnosed ADHD, and we learned he had something of a visual processing disorder. He got meds, and he got glasses. He became much more successful in the classroom, much more confident in himself. He was at 80% higher risk of ADHD just by fact of his prematurity. Genetics also played into that hand.
He’s a small guy. When he fell off his own growth curve a couple of years ago, we started with x-rays, bloodwork, a trip to the endocrinologist, protein shakes, diet changes, etc. Turns out he’s just dealing with delayed puberty. Again, fabulous genetics, from both parents. But it was a process. And I couldn’t help but wonder if this wasn’t another shoe. You know that growth chart doctors parade in front of parents at every visit? Yeah, that. Well, he wasn’t even on that chart for height or weight until he was well past three years old, and even then, he hovered below 3%. He still hangs out down on the lower end. His BMI isn’t close to being on the chart. That teeny, tiny, 2 -pound, 15 inches long baby is still a long, skinny young man. Another shoe….a handle-able shoe, but it still feels like a shoe.
With some consistently funky bloodwork, we were sent to a specialist at Children’s who put him in a study. Part of that study was a body scan, including bone density. I thought nothing of it. The initial purpose of the scan was to compare muscle mass, bone mass, and fat mass in his body to determine if he were at healthy levels. Do you see another shoe? I didn’t, until the results from the study came back. He has severely impaired bone density. I didn’t know what to do with that. I was calm about it for a couple of days, then kind of started to process what that might mean. Impaired bone density = easily broken, right? He’s an active kid. And he’s a normal kid. Rough-housing, falls, trips when he’s racing – they’re all normal parts of his day. So now we have supplements, and a trip back to endocrinology.
I thought I was doing okay with this. It’s just another bump in the road, right? But then my preemie-mom-mind went there….Could this be another shoe? He’s a 16 year old, former 26 weeker. He’s kind of on the front end of micro-preemies being considered viable, and fought for. The medical community is still learning the long-term outcomes of saving these littles. Trust me, in NO WAY am I saying not to save them, give them a fighting chance. I’m just saying, when your baby is born at 24, 25, 26 weeks, they can’t tell you how that’s going to look when he’s 15 years old, 20 years old, 50 years old. Of course, not any one of us, preemie or no, knows what our lives are going to be like long term. So there’s that. But I couldn’t help but ask, could this new thing, this impaired bone density, be a result of his premature birth? Is this some outcome they didn’t know could happen?
I wouldn’t change a thing done to save him way back then. Oxygen, steroids, lipids, caffeine, blood transfusions, vitamins, and antibiotics were a way of life for 93 days. Those are the things that saved him. But did one of those things do this? We’ll never know. And in all honesty, it doesn’t matter. I wouldn’t undo it. I have my baby. He came home, and he’s a thriving, normal teenager.
I do see that shoe hovering over my head. I keep looking up at it, waiting for it to fall. I don’t know if this new wrinkle is a shoe, but when you have a micro-preemie, pretty much everything the rest of your son’s life will look rather shoe-like.