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Monthly Archives: November 2011

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

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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Posted by on November 8, 2011 in Uncategorized

 

Purple is the color of Prematurity Awareness

You might have noticed I changed the appearance here, to purple. The purple is in honor of Prematurity Awareness Month, a month of spreading the word of a cause that has hit too close to home.

I, technically, have two preemies, which means we have two babies born before 37 to 40 weeks. Tucker, our new baby, was born at 36 weeks. He made it that far with the help of some daily blood thinning injections that we learned I needed with Ollie, our older boy, who was born at 28 weeks. Nearly three years ago, we had a December baby, instead of a March baby. And those 12 weeks are crazy important to the development of a baby. It’s so much more than growing that needs to be done in those last three-ish months. That’s when a baby develops the ability to breathe, when suck, swallow and breathe while eating becomes instinct, gets important anti-bodies to help build his immune system.

When Ollie was born, his eyes were still fused closed, his body was as frail as an eggshell, his skin too sensitive to stroke. At 711 grams, he weighed about the weight of a Wi-Fi equipped iPad, and his lungs were too underdeveloped to work; he was on a ventilator for 10 days. His early expectations were primal: open your eyes, learn to breathe, grow. As we became NICU regulars, we learned the good and the bad, the positives and negatives, the things premature parents don’t want to hear and the things we waited for months to hear: his belly has residual feeds. He had to be “brought back” from an apnea spell. He needs to pee. We celebrated those “heavy” diapers, even if they were helped by diuretics. We were proud of his pooping, we rooted for an empty belly when it was time for another feeding through a tube in his nose. The big apnea spells (where he’d forget to breathe and drop his heartrate to scary levels) brought tears along with the dings of his monitors. Finally we heard the good news: you can bring your car seat in for his Car Seat Challenge, I hope your crib is set up, and finally the “BYE OLLIE! We’ll miss you!” written on his whiteboard, where nurses wrote notes and updates.

A week after he was born, I finally held my Ollie, a mere 12 inches long, with his ventilator tubes taped to my shoulder, snuggled in my shirt to keep him warm and give him skin-to-skin contact in Kangaroo Care, often the only tangible help a mother can provide in this situation.

Kangaroo care, shortly after graduating off ventilator

He calmed, listening to my heartbeat, listening to my breathing, hearing my voice, the sounds he *should* have still been hearing at all times, instead of the whirrr of a ventilator, the beep of monitors, the sounds of life on the outside. His isolette had too much equipment nearby; a pole of medications on pumps that were delivered through his belly button IV, tubes, wires, and the oscillating ventilator that sounds a lot like the air compressor Matty has in the garage. It was overwhelming; I put myself in survival mode, trying my best to set aside worries that he might not make it, arranging my life around his care times, so I could be present while his team did its hands-on checks, its status updates, changed his diaper and maybe hold him, if he was stable enough.

As he reached the milestones that aren’t found in a typical baby book, we gained more confidence that we would be taking him home. He breathed without a ventilator 10 days after his birth, but needed supplemental oxygen for eight months altogether. He took his first dose of pumped breastmilk and opened his eyes all within the two days surrounding his breathing. He gained weight, his skin grew less sensitive to touch and I could stroke his head to comfort him. We gave him baths, his arm wrapped in a sterile glove to protect his IV lines, his head the size of a tennis ball. In his nose was an oxygen tube, down his throat was a feeding tube, but underneath all the wires, the tubes, the ruddy skin of jaundice, he was Our Ollie. And Our Ollie was making it. He was fighting through the bad news and pulling out his feeding tubes; he was fighting with all the flair and stubbornness that’s still part of his personality.

We took him home just three days after his due date, after 84 days, with an oxygen tank and apnea monitor crowding the back seat. He weighed five pounds. All of our Ollie souvenirs came with us, the tiny yellow hat that he wore the first time I held him, finally laughably too small, some doll-sized diapers and blood pressure cuff, his special cowboy blanket that covered his isolette to block out the light and let him rest. But the final morale of the story is: we came home.

This is OUR story. For the most part, it’s generally uneventful compared to a lot of other babies born at his gestational age at his gestational size. No emergency surgeries, no middle of the night phone calls, no infections. But the problem is: 1 in 8 babies are born preterm, so worldwide, according to the March of Dimes, over 13 million babies are born too early every year.  And the United States has earned a C in worldwide comparisons of premature baby care and success rates. The good news here is that preterm birth rates improved in almost every state between 2006 and 2009, and in several states the change was more than 10 percent, according to research done by the March of Dimes. It’s hard to predict who’s baby will be full-term, what the repercussions might be for a preemie, micro or late term. And women who do everything right while pregnant can – and do – still experience pre-term labor, fetal distress, infections and a host of other reasons (ahem: clotting disorders) that would require a baby to be induced or c-sectioned out before his 40 weeks are up.

Tucker’s birth at 36 weeks was uneventful, delightfully uneventful and for that I am forever thankful. Our take-home baby, he spent 0 minutes in the NICU. He breathed beautifully, cried right out of the gate, ate like a champ; he essentially restored my faith in pregnancy, childbirth and has showed me with clarity that babies have 40 weeks to gestate for a reason. Even though he didn’t quite make it to that magical 37 to 40 weeks, his lungs were fully developed, his muscles have cooperated with each other, he’s right on track with babies his age. Probably not strangely, Tucker’s ease has given me new insight into Ollie’s delays. Not being around kids very much growing up, I wasn’t all that knowledgeable about how children develop. Comparing the two experiences is like apples v oranges. To see Tucker do things with ease at 11 months that Ollie struggled with for much, much longer, has helped me realize just how far Ollie has come. And how differently I would have handled the delays if I knew any better.

Ollie’s birth at 28 weeks was directly related to a clotting issue I have; Tucker’s water broke on its own, because of the meds I was on to keep him cooking longer. I didn’t drink when pregnant, or stand on my feet all day, or take illicit drugs or fall into any other special categories. I was just a regular old run-of-the-mill Plain Jane whose clotting disorder went undiagnosed until something went awry.

It really can happen to anyone, and it really does knock you off your block if it does.

 
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Posted by on November 1, 2011 in Uncategorized