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the statistics are nuts for things to be aware of that could affect him forever

08 Nov

In honor of Prematurity Awareness Month, I seem to be doing a “series” of prematurity based posts here.

My child now looks like a typical kid. I might even say that, in a lineup of children, you’d be hard pressed to find the boy who was 1 pound, 9 ounces when he was born. At three years old, he’s on the smaller side, not quite 30 pounds, but for the most part, he looks like the Average Joe of Toddlerhood.

But if you look a little closer, spend a little time with him, you’ll notice some differences. The up-until-very-recently lack of any words at all. His physical limitations. He’s a bit of a pinball, bouncing from toy to toy about the room, not always able to sit still.

And these are all things that worry me. I suppose these are all things that would worry the random parent as well, but it’s somehow more pressing given his birth.

Because premature babies are at higher risks for a lot of physical and mental challenges.

When he was still struggling to sit unassisted at 17 months, his Occupational Therapist helped me realize that because he was born so early, there were a lot of connections within his brain that needed to be made before they were ready. And in the truest comparison I can think of, his brain has some wires crossed that we’re working through. When he was exposed too early to the world, his brain and muscles made spastic, on-the-fly connections that we have to essentially “re-wire,” especially when it comes to gross motor skills and speech abilities, and perhaps attention span issues and learning disabilities.

The statistics of premature birth and learning disabilities, Cerebral Palsy, cognitive delays, lung fragility, eyesight issues, even lower IQs…they’re all unsettling to a mother of a premature babe, even moreso when the statistics of Extremely Low Birthweight (babies born at less than 1000 grams) micropreemies.

Ollie was 711 grams at birth. At 28 weeks, the average baby is over 1100 grams; he was experiencing IntraUterine Growth Restriction and fetal distress and hadn’t grown in about 3 or 4 weeks. When your baby weighs about the weight of a bunch of bananas at birth, and his nurses now feel like part of your family, it’s hard not be overjoyed when you bring him home.

And then, his six month adjusted birthday rolls around and you think: “hey, shouldn’t he be sitting by now?” And then by 9,  “where’s his clapping, and, really no sitting yet?” And then at 11 months, “no, clapping, still no sitting…and why doesn’t he crawl?” and even with a therapy or two a week to help him work through these things, you’re still never in a place where you can trust that your child will be “fine.”

Which all seems kind of unfair when you actually watch your child develop when he should be tucked away safely in a womb.

While we were in NICU, we were warned of all the effects he could experience. The ventilator he was on for 10 days, that *could* result in blindness. The Grade I brain bleed we discovered, that *could* mean he will have cerebral palsy. The weak lungs he has, he’s going to have fragile lungs for a long time and will have Chronic Lung Disease and *possibly* severe asthma. When talking to doctors and nurses (and consulting Dr. Google – not recommended), the statistics are nuts for things to be aware of that could affect him forever. But, we just have to wait and see. By two years old, they say most preemies are caught up if they’re going to be caught up, but his catching up seems to be a little delayed. While hearing of all the things that he could be living with forever, Gross Motor Delay and Speech Delays seemed the lesser of a few evils, quite honestly, and I’m thankful that that’s all we’ve so far seen. And while his baby book remained fairly empty of Gross Motor milestones until at least 18 months, his Fine Motors were always ahead of where he should be, which flawed thinking or not, reassured me that his brain works just fine.

But when we’re asked to “take a break” during the library story time because Ollie is pinballing around the room and unwilling to settle down, and when outsiders comment that he’s a “busy” boy, I wonder how much of this is typical “hey-I-didn’t-walk-until-I-was-two-and-have-been-in-quarantine-most-of-my-life” delight in exploring a room and natural toddler curiosity, or if it’s the seeds of ADD, ADHD, or something else lurking he’s experiencing.

In the last few months, I’ve seen his maturity level grow, though, and I feel encouraged that the novelty of “just walking” is wearing off and he’s able to work his brain on more task-oriented levels. He will play with Legos, building and taking them apart, or his Thomas trains for half an hour. He’s sat with me, head on my lap, watching tv and laughing at the funny parts. He helps me with Tucker, putting diapers in the kitchen, bringing me his bottle, or even trying to feed him. We’re able to work on letters and numbers and shapes and colors because he’s finally able and interested in focusing long enough to get past C before running off to do….anything else.

So….no. Premature babies aren’t just small. They’re not just cute. Not only can they struggle to live from the get-go, but the worry never, ever seems to let up.

And 1 in 8 babies worldwide will be born too early and the parents of 543,000 babies will have these worries and concerns. Babies are designed to gestate for 40 weeks. Not 28, not 35, not even 37…but 40, for even late-term preemies can suffer the effects of a premature birth. So a mom of a preemie might give a pregnant woman the stinkeye for complaining about *still* being pregnant at 36 weeks, we might be too concerned about your pregnancy if things aren’t going as well as hoped, we might reach out to a fellow preemie mom in ways that may be considered overbearing. But it’s only because we have seen the effects too close to our own hearts.

For more information, visit the March of Dimes.

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4 Comments

Posted by on November 8, 2011 in Uncategorized

 

4 responses to “the statistics are nuts for things to be aware of that could affect him forever

  1. Nicole Lemke

    November 8, 2011 at 12:29 pm

    I don’t know how a professional even would be able to gauge add behaviors in a kid that young. They all seem to be bouncing off the walls at storytime!

    I would struggle with all the unknowns. And knowing what to look for wouldn’t even help. I have a friend who has a daughter with di georges and the possible results span so many years- like bipolar disorder as a teen. It’s like you already had the years of worry early on, can’t you catch a break in a decade?!?

     
  2. Nicole Lemke

    November 8, 2011 at 12:36 pm

    You should work for the March of Dimes. All the pamphlets from the organization, fundraising brochures, walk stuff would all fit with your experience. It would be purposeful without being near the bad stuff as a nurse. And I have to think the corporate culture would be supportive to working parents… No clue where their hdqrts are, though

     
  3. BRO

    November 8, 2011 at 9:30 pm

    I agree with Nicole

     
  4. BRO

    November 8, 2011 at 11:43 pm

    Also, it’s difficult to imagine all the
    feelings and worries that preemie parents g go through; it’s as if you can never
    relax and enjoy his childhood fully.

     

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