The End

While I’ve talked about the frequent weight checks for Big Man, I haven’t really talked about all  he’s been going through the last few years, and part of the reason for all those weight checks.

It wasn’t something entirely unexpected, but it was frustrating nonetheless.  Back in late-seventh, and eighth grade, nearly all his friends started their growth spurts. While Big Man didn’t stop growing, he didn’t spurt. Suddenly, most of his friends were significantly taller, while he stayed much the same height. My brother grew late. Spouse grew late. So did my BIL apparently, so we weren’t too worried. But then he fell far off his own growth curve….like REALLY far off his own growth curve. It was enough his pediatrician called in the troops – ordered blood work, and started all the referrals to any specialist applicable. We’ve spent the last 2+ years getting follow-up testing, blood work, bone age scans, visiting endocrinology a few times.

What it came down to is the fact he is just constitutionally delayed – by a bit over 2 years. That means his body is two years behind his chronological age. That’s kind of a big deal for a fourteen/fifteen/sixteen year old. He took it in stride initially, but then when even the “small” kids in his friend group grew taller than he, the struggle began. He never said much about it, but I knew it was hard for him. It was miserable for me to see the difference, to see my little big boy walking around, significantly shorter than most of his peers. I prayed continually for him to grow. Like when  he was in the NICU, we began to celebrate every ounce gained, every part of an inch grown. We watched for any sign he was entering his spurt. Days, weeks, months passed, and nothing.

He’s nearly seventeen. He’s grown almost three inches since January 1st. I really have to look up to him now. His voice has changed. His face looks different – more adult, more defined. He sleeps constantly. He eats when he isn’t asleep. He’s shot up three lines on the growth curve. His ADHD doctor now says he can’t even guess how tall Big Man will be (just a year ago, he was telling me Big Man would maybe end up at 5’9″ or so).

I can’t express my level of relief – moreso for him than anything. I don’t have to see that look on his face anymore. He’s catching up to his friends. We saw his pediatrician last week and she was surprised, but not really surprised. We’ve reached the end of this particular medical journey. He is fully in his growth spurt. Whew. We do have one more visit with endocrinology in September, just to dot that final i and cross that final t.

I’m once again reminded of his NICU days…..in the beginning, in the middle, and even towards the end, it seemed we would never see the day he would come home. The last few years, it seemed we would never reach the end of this delay, we wondered he would ever grow. This child has always done things in his own time, on his own terms. This shouldn’t have been any surprise to me at all, yet it was. But now this too will be put behind us, and I will look up at my getting-taller-every-day big boy, and be thankful.

Is this the next shoe?

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.

The weight wait

He was two pounds even at birth, add an ounce once all the tubes and wires were attached. He dropped down to 1 pound 11 ozs quickly, and took three weeks to get back to his birth weight. His weight was measured in grams, not ounces or pounds. We learned quickly how to convert to pounds, but that was pretty depressing. He’d gain two grams, and then lose five. His body was working so hard to do things it wasn’t prepared for yet. It drained all the energy he ate. There wasn’t enough left for him to grow on.

He did eventually grow. But as it is with micro-preemies, it takes them a good long while to catch up.  When his baby sister was born, he still looked like a 9-month-old. We spent a lot of time explaining “corrected age.” He had multiple weight-checks every month. I obsessed about those weight checks, praying for gains each and every time.  I was even excited for his monthly synagis shot appointments, because I knew it meant another weigh-in.

For a short while, once he “caught up,” he looked like every other kid. But then genetics (two thin parents, his dad extremely thin growing up) caught up with him. He maintained his own growth curve though, and he did grow, so we didn’t worry. But then he fell off his own curve….far off his own curve.  For the last two years, we’ve had more frequent weight checks, most of them wrapped up in other appointments, but watched closely. I tried not to worry at all, knowing how small I was way back when, how much his dad weighed even at six feet tall, but it’s hard when it’s continually thrown in your face, how thin your child is, how much smaller he is than his peers.  I can wrap my hand around his upper arm. We used to buy the slim jeans with the elastic bands to pull them as tight as possible. You can’t find those in adult sizes.  We finally found slim-sized, super skinny jeans. The waist is usually still a bit too big.

Trust me when I say the child eats. He eats better than the other two combined.  We’ve been given all the weight-gain tricks. He uses them all. He takes protein bars to school to eat in the morning and afternoon, along with his protein/carb/calorie-loaded lunch. We’ve had him on full milk for four years.

I took him for his well-child (well-teenager?) check this afternoon. He’s lost two pounds since the beginning of January. Again with the discussion of how to get more good calories into him. Again with the follow-up appointment in two months to once again check his weight. When told he’s training for a half marathon in June, the doctor had a suggestion for before and after run nutrition.  Endocrinology, upon reviewing all his records and genetic predisposition didn’t want to see him, said it wasn’t necessary. For that, I’m grateful. We currently have enough follow-up appointments to last until May.

Every time he’s weighed, I hold me breath. It was the same in the NICU – weight was the first stat I would check on his chart every morning, just after looking at his monitors to see how he was breathing and what his heart rate was.  Logically, I KNOW we can chalk this all up to genetics. I know it. But I can’t help but go back to that NICU time, can’t help but worry each time I see his pants falling off, the belt he’s tightened as far as it will go, the stick-like arms and legs as he runs beside me. And so we wait for the weight.

For Him

Big Man is fifteen, a freshman in high school. For over a year, we had been following up on a delayed-growth issue, including blood-work, more blood-work, x-rays, and a visit to endocrinology. We wouldn’t have bothered with all the testing, but he had fallen off his own growth curve. I wasn’t really worried….Spouse, his brother, and my brother all had their big growth spurts late. But it was beginning to bother him, and his pediatrician just wanted to make sure we were ruling everything out. So we did. The diagnosis was his bone age was a full two years behind his chronological age. Even the endocrinologist said, “A year from now, when you’ve grown six inches at least, we’re going to be laughing at all the time we spent on this.”

That conversation was in April. For six months, I’ve watched anxiously, listened intently. He’s grown about an inch since January 1st, but still lags far behind nearly all of his friends. Even his friend who has had the “little” moniker before his name (Big Man has three close friends with the same first name, so they’ve differentiated them with nicknames) has shot past him in height.

I know he’s going to grow, but dang it, I wish it would happen, and soon. I wish it for him. It’s hard to be one of the oldest freshmen, and yet one of the shortest freshmen. It hurts  knowing it bothers him. Yes, eventually we will be laughing about all of this. To my knowledge, no one at school gives him a hard time about his height. He’s not mentioned it anyways. I hope he isn’t being teased.

This one is totally out of my control. There’s nothing I can do to speed up the process. We just have to wait. It is going to happen. He will grow. But for him, I hope it’s sooner rather than later.