Mothers and Preemie Daughters

Baby MI just read a Huffington Post article about a new “Human Placenta Project,” which aims to better understand the organ that makes growing babies possible. If the placenta fails, the pregnancy fails. If the placenta suffers, the pregnancy suffers. Amazingly, such an important organ is little understood.

It is thought (and I stress thought because no one really knows) that early-onset preeclampsia is related to a poorly performing placenta. Why and how and what to do about it are all questions up for research.

After I had J, I thought a day might come when I’d put preterm labor, J’s traumatic delivery, and the sorrowful months of his babyhood behind me. I knew they’d marked me, that they’d marked all of us, even our extended family. But, I thought as J grew and his health improved and we had big, healthy, full-term babies, that it would all seem like a dream.

In so many ways, M changed everything. Not only was my life forever marked by the way my children entered the world, not only was my childbearing over, and not only was this a way of life that I began to embrace…

M was a girl.

It’s different having a preemie who is a girl. A huge question looms: Is this genetic, beginning with me? Could M have preemies, like me. I have nothing to warn her against, because I never received a single diagnosis about anything. Maybe it is just me, but what if it isn’t? I want M to be resilient in the face of adversity, but do I wish this adversity on M? Never.

All the Preemie Mamas out there know exactly what I mean. All the parents out there probably understand too. But, I know the Preemie Mamas hope one day they’ll have the satisfaction of holding big, healthy babies and watching their children have the beautiful experiences they missed.

It’s even deeper than that, though. I am afraid for M, because preeclampsia was deadly. And it felt deadly. It was shocking how rapidly it took hold of me. It was a thief in the night, ready to take M and me both. And what if M weren’t as fortunate as me? What if she lost her baby, or her life, or both?

Sometimes, I feel like because so many people have healthy babies in our day and time that we’re complacent on research into pregnancy and pregnancy complications. Too many babies die unnecessarily around the world because of our lack of knowledge. Once things go haywire in pregnancy, it’s a crapshoot.

For my daughter, I have to believe that things will be different.

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If you’re interested in the Huffington Post article, here’s the link.

Childbirth Small Talk

January 2013 078At a kids’ party last week, I realized something: I am very uncomfortable around any discussion of natural childbirth. Like sweaty palms, looking for an escape, must use my baby as a buffer kind of uncomfortable.

I was those women, before I had my own babies. I watched The Business of Being Born and complained about the high rate of C-sections and how doctors rushed long labors even though both mother and baby were healthy. I might have even questioned women who actually chose C-sections or bottle-feeding over the more natural options, though I am no longer in any position to judge, if I ever was.

In many ways, I tend toward a naturalist way of thinking. I believe in recycling and reusing and reducing consumption. I cloth diapered both of my kids. Ask our contractor if I don’t love me some trees, and I’ve proposed adding chickens to our future garden. I love organic produce, and I only use cleaners made from natural and harmless ingredients, most of the time. I have a hippy bleeding heart for the natural world.

So, on one hand I totally get the sentiment that in pregnancy and childbirth, less is more when it comes to intervention, but I feel so uncomfortable when the topic of childbirth comes up. And with a bunch of women with small children, it’s bound to come up.

I can small talk with the best of them. My husband says I can talk to a fence post. But, childbirth is not a topic of chit-chat for me, and I can’t small talk birthing babies.

I remember the things I was asked to do in the trenches of emergency childbirth, and I am confident about the kind of woman I was when I was trapped in that dark corner. I know I was tough as nails. I know I was a fighter. I know my husband and family were proud of me. And I forgive my body for what it did to all of us.

But, in a conversation about the ills of C-sections, what do I say? Somebody, please tell me? Yes, so many women have C-sections for all sorts of reasons that probably don’t justify the risks and the expense of major surgery. But, I wasn’t one of them. Without medical intervention, my husband would be a widower who lost both of his tiny children. That is my reality.

What a conversation killer.

So, I keep my trap shut and don’t say a word. But, then I haven’t done myself or other women like me or the women who speak of things they don’t understand any favors at all. It’s all still too painful for me to casually mention that my body in pregnancy was like the bad apple in the Berenstain Bear book I read as a child: perfect on the outside and a mess on the inside. I don’t want to shock or frighten or sadden, so I do the worst possible thing, which is shut down completely. This is no way to make friends. This is no way to advocate for preemies. Shutting my mouth is no way to raise awareness about how more research is needed to understand even the basics of some of pregnancy’s most common disorders.

I sit there like a lump on a log, contributing nothing. Why do I clam up?

I am afraid. Of being judged. Of being pitied. Of being misunderstood. Because it feels worse to open up and then be shut down than to ever open up at all. I realize this sentiment translates to so many of us, and I wonder what kind of people we would be if we didn’t feel so isolated. The larger our communities get, the more lost I fear we are, away from the people who know us best. Some of my dearest loves in life who are my soft place to land are scattered–no lie–all over the world.

I realize that at the kids’ party I didn’t even give the childbearing-discussing women a chance to be curious or understanding or sympathetic. I prejudged them. But, then I picture myself in that situation again, the odd woman out talking about one of life’s most painful topics for me, and I still can’t imagine what to say or where to begin.

The Preemie Brain

KROMKRATHOG/freedigitalphotos.net

KROMKRATHOG/freedigitalphotos.net

There are misconceptions about what it’s like for a baby born three months early, and they generally revolve around the idea that a baby who can live, even with extensive intervention, is basically just a tiny version of a full-term baby. And that just isn’t true. At all.

Preemie brains are wired differently. Especially the brains of preemies born months early.

I’ll admit it. Sometimes, I’m a little brusque when people question why my kids have therapy. I really try to be open and honest about all aspects of having a preemie, because if someone bothers to be interested, I want to share what I know. But, there is an element of the population that asks questions in a judgmental way. Why would a baby need therapy? Don’t I know preemies will catch up eventually anyway?

And they’re wrong. Babies often do need therapy, for a variety of reasons, and just like we seek out medical care, as parents we should be open to occupational, physical, and speech therapies. It is our job to change therapists or end a therapy program if we see that it isn’t working for our child, but I don’t understand being closed to the options available for your child before trying any of them. And I don’t know why another parent would question my child’s need for therapy. Besides, so much research shows how malleable a small child’s brain is. The more you encourage it to rewire itself around the damage caused by such an early birth, the more possibilities exist for that child.

When it comes to preemies and brain damage–caused by oxygen deprivation, brain bleeds, holes in the brain, and overstimulation to an immature neurological system–the jury is out. No one can tell you exactly how a child will do in a year or two years or ten years. This is why early intervention is critical and why developmental milestones are so crucial. Sure, the preemie born two months early won’t roll over or sit up on the same schedule as a full-term baby. But, when he isn’t rolling over at 7 months old, doctors and therapists begin to worry that larger issues like cerebral palsy exist. It’s not just about catching a preemie up to a full-term baby; each milestone met is evidence that a baby’s brain is continuing to grow and develop.

I also get frustrated when people tell me they have a preemie, who was born three weeks early, and that they understand what it’s like to have a preemie. I’m not taking away from the fact that a birth experience three weeks early can be a surprise and stressful, but the long-term concerns and care for a baby born at 34 weeks or later is completely different from all the risks of babies born MONTHS early. A baby born at 26 weeks has an entirely different experience from one born at 36 weeks. The earlier the baby is, the more risks for complications; it’s exponential. Before I was a mother, I’m sure I didn’t know the realities of having preemies–the therapies, diagnoses, interventions–but I know I wouldn’t have assumed that a baby can pop out of the womb three months early and act like a full-term baby. Babies are never meant to come into the world weeks and weeks early, and just because we have the capabilities to give them a great shot at life doesn’t mean the journey is easy. For most preemies born before 32 weeks, it takes years–yes, years–to catch up developmentally, and they may continue to face the challenges of being a preemie well into their childhoods and beyond.

Not all preemies are created equally. Another misconception is that because a neighbor had preemie twins born at 29 weeks who were typically developing babies within months of their release from the hospital, my experience should mirror that one. Each preemie is different, as different as their experiences and personalities and genetic makeup. So many NICU journeys overlap, but each one is unique. There is no baby whose story is just like anyone else’s. Miraculous stories should be shared, but sometimes the miracle is that a baby lived in the first place, not in how fast he bounded out of the hospital. Sometimes, when the expectation is that a baby should come home before her due date, it sets an unfair bar of achievement. And expecting a preemie who comes home to act like a full-term baby is not a fair standard either. It sets the whole family up for disappointment and frustration, and it takes away from all the miracles achieved on a daily basis.

I was hard on J. I knew in my head that his development would take longer, that he would be a baby well into his second year. But, I wasn’t prepared for the reality. I pushed him hard to walk and talk. Now, I better understand that he did hold himself back, as it is in his nature to do. J doesn’t rock the boat or take risks, and walking is risky for a baby because it involves falling. I see that J needs time and space and encouragement, and any frustration on my part hurts his progress. I also know more preemies than I did as a brand-new mother. I better understand that J’s health itself should be celebrated; we are so fortunate for it. I wish I’d focused on that fact more and worried less. But, I felt that I was constantly explaining to the world at large why my 17-month-old wasn’t walking, why my 2.5-year-old wasn’t talking, why my 3-year-old was wearing 24-month clothes. That’s all part of the journey, though.

Looking back, J tackled developmental goals impressively; it was just done with his characteristic caution and quiet reserve. He wasn’t showy. He didn’t develop in leaps and bounds, as my daughter does. Each day was a slight improvement on the day before, until before we knew it he was a typical 3-year-old. I was so frustrated that J didn’t walk until he was 17-months old, when he had the ability a month or two earlier. Then, enter M, who didn’t walk until she was nearly 20 months old and 17 months adjusted age, 3 months past the norm. M is healthy, strong, physically-active; I think she’ll be an athlete with her energy level, determination, and competitive spirit. But, she walked much later than J, and had he been my second child instead of my first, I would have better appreciated all of his achievements. Preemies are just on their own schedule.

I am just now fully realizing something critical: a preemie brain is phenomenally different from a full-term brain. Sometimes, we expect to see a preemie with asthma or glasses but not a preemie who takes two years to walk. I think this is because the stereotypes are based on a dated understanding about the capabilities of NICUs. The current medical technology is amazing, so many babies who come out of the NICU are in excellent outward health. They look perfectly healthy, but the NICU can’t alter the reality that a baby’s brain is not made to regulate temperature and breathing or to process the nerve sensations of the human touch at 26 weeks. I have witnessed how my babies are wired a bit differently. My husband and I now contribute some of the quirks of our children, which mirror no one else in the family, as having to do with the extraordinary feats of their brains. Sensations like light and sound are just different to preemies, even in babies who aren’t diagnosed with any other condition. Our preemies are easily over-stimulated and hard to relax. They don’t want to be rocked or held. They struggle to fall asleep. They cannot sleep in the car despite how exhausted they are, even on 12-hour road trips. In fact, the more exhausted they are, the less able to fall asleep they become. My son screamed for his first months at home, and the only way to wind him down was to push him in his stroller around the house in circles until he grew drowsy. His body would twitch as he struggled to relax. And we have literally held my daughter down until one by one her muscles relaxed; we could feel her falling asleep from her legs, to her arms, to her hands, and finally her eyelids. Sure, some full-term kids have some of the same problems, but to the extent that we notice it? We are regimented about nap times and bed times, about routines, and about sleep environments for a very good reason; sleep can be a challenge.

Another anomaly is that both of our preemies were left-side dominate as tiny babies, when almost no one in our families is left-handed. The conventional wisdom that you won’t know if a child prefers one hand over another until age 3? Hogwash! Ask our long-time physical therapist, and she’ll be our expert witness. The first hand both kids used to put a tiny, baby fist in their mouths? The left. The arm they first used to pull up? Their left. The first steps they took? With their left foot. My kids are complete opposites in temperament and personality, and the strengths of one are the weaknesses of the other; yet, they share left-handedness. More preemies are left-handed than full-term kids, and I would love to see more research concerning why, not just because it’s interesting but because I think it has to do with unusual brain development. A better understanding of that brain development could also shed light on all sorts of risks that our preemies face: autism, SPD, ADD/ADHD, cerebral palsy…and the list goes on and on.

Preemies are exceptional, in every sense of the word. They are amazing and unique, and they aren’t just tiny versions of bigger babies. It’s a completely different experience, and I guess I’m just a little out of breath with saying so. I love questions and curiosity; I like relating to other parents and sharing our experiences. Just because this is my life doesn’t mean I’m not curious about all the unique aspects of parenting that someone else has experienced. I just don’t want to have to justify why my child receives therapy or additional medical oversight or state medical services. I’m tired of explaining that part, like I’m some sort of taker of the medical system or some over-reacting stage mom.

I’m just a mom who has preemies, and I’m doing what any mom with tiny babies would do.

The Worldview of Little Kids

J wore his glasses to school this morning for the first time. I prepped him with the rules: don’t take them off, don’t let other kids touch them, and ask a teacher if you need them cleaned. He’s so responsible that he probably didn’t even need the list of rules.

The glasses are heavy on his little face, and his right eye is completely blurry when he wears them–this is to be expected and will hopefully improve as his condition improves. But, all of the social stigmas on wearing glasses? Just like it never dawned on me to be embarrassed about wearing braces in the 4th grade when it was still a novelty to all my classmates, it hasn’t crossed J’s mind to be embarrassed about his glasses. And I was right that his little friends wouldn’t even notice the change in J.

His teacher told me when I picked him up that she asked his classmate if he noticed anything different about J today. The little boy thought for a minute and said, “J has bug bites on his face,” referring to the two, tiny mosquito bites that are barely noticeable. The big, blue glasses? Not so much.

Have I mentioned lately how much I adore little kids? They might poop on you, wake you up in the middle of the night, and throw temper tantrums in public, thus proving how difficult it is to parent, but their worldview is so refreshing!

It’s been an hour, and I’m still chuckling to myself over J’s little friend.

“Hey, J. You’ve got to watch those mosquito bites. They’re totally covering up your complexion.”

The Glasses

J Glasses

Glasses, And What They Mean

J had an appointment last week with a pediatric ophthalmologist. And he needs glasses. At age 4.

We are lucky. Extraordinarily lucky.

And I am vain.

But, you can’t help how you feel, can you? I know that I’ll roll the idea of his wearing glasses in my head like a pebble, until it’s worn smooth. I know I’ll adapt. He’ll adapt. We’ll all adapt.

Six weeks ago, I took the kids to visit their pediatrician one last time. We drove 4.5 hours and spent the night in a hotel three weeks after our move so that both kids could have one last check-up with the doctor who has shepherded us through these four years of bringing preemies home. It just so happens that our pediatrician has a portable machine that checks vision just by a child looking into it because she is in partnership with a major research hospital in testing the effectiveness of the equipment. The machine showed that J has amblyopia, or a lazy eye, and our doctor recommended we follow up with a specialist.

It turns out that J does have amblyopia, and his specific kind isn’t caused by any malformation of the eye. Both of his eyes are in perfect health. As his eyes have developed, his right eye has lagged behind his left eye; this is interesting to me because he’s always been so left-side dominant since his earliest days. Because his eyes developed so differently, a disparity formed between the vision in his two eyes, and his brain couldn’t handle two, separate signals. So, it began to shut off the signal to his weaker eye. His left eye sees perfectly.

Because I am nearsighted, I monitored his ability to see things at a distance. He can see a tiny bird high in the sky, with his strong eye. Most of his vision problems are with his ability to see close-up, which I never considered. And as time marched on, this slow, silent condition has robbed him of vision in an otherwise healthy eye; eventually, his right eye would become so weak that his brain would shut off the signal completely, rendering him blind. The damage is reversible in a toddler. Over time, the condition becomes more permanent as the brain becomes less malleable, which is why early detection is crucial.

I have seen how malleable a preemie’s brain is, so I am optimistic. I really believe J’s vision will correct itself over the next year. We have no idea if he will eventually strengthen his right eye enough to reclaim all his lost vision, and he may always need glasses. I’ve always thought it’s likely my kids will wear glasses by the time they are teenagers, since my astigmatism is hereditary, but I’ll admit there was a badge of honor in a preemie as early as Jay not having to wear glasses as a child.

We easily could have scheduled J’s check-up with our new pediatrician, who does not have access to such sophisticated equipment. And we easily could have missed J’s condition, because there are no outward warning signs. Our pediatric ophthalmologist said it’s very uncommon that a child with his specific condition is diagnosed so young.

So, if we’re so lucky, why did I feel so sad at the news?

Because despite all the risks and all the odds, J came out of the NICU unscathed. In a miraculous trouncing of fate, he thrived. He’s worked so hard, and we’ve worked so hard. But, despite whatever developmental delays he has overcome, on the outside he always looked like a perfectly healthy little boy. And in my vanity, I’m resisting accepting that he does have a vision problem and that prematurity and unusual brain development are likely contributing factors.

J is so reserved that I don’t want him hiding behind his glasses or viewing himself as different from other kids his age. But, that’s me putting my prejudices on a 4-year-old because his young friends probably won’t even notice his glasses. Most little kids really don’t care about things like that. So, I had an inward shaming last week when I fussed at myself for being vain and for being ungrateful. We could have received much worse news.

We have received worse news.

But, one of the reasons why I write is that it helps me understand my own complex emotions. I realize as I’m writing this that J’s glasses are also an outward reminder that as J grows, we could discover other conditions that may or may not be caused by prematurity. He’s at a higher risk for nearly everything, and I am able to block out those statistics because his health is usually so good.

I know my fear is universal because I am a mother, and parents always worry about their babies. No matter how big they get or how healthy they are, they’re always our babies. It’s not just that J needs glasses…and I’m not really that vain. My sadness has to do with the realization that this condition was silent and couldn’t be prevented through my vigilance.

Here’s my Public Service Message: please get your kids’ eyes checked regularly. J passed all the vision screens in the NICU, so we had no reason to suspect vision problems. Looking at a vision chart at a pediatrician’s office might be fine for most check-ups, if there’s no family history of vision problems, but I think all kids should receive a more in-depth vision screening at least by age 5. Poor eyesight can lead to all sorts of physical and mental delays, because kids don’t have proper coordination or the ability to complete tasks like reading. So, please don’t drop the ball on vision screenings, as I did!

Gone Is The Long Babyhood

J LaughingRecently, J has taken ownership over his role as Big Brother. It used to be that M was crawling in all the wrong places (usually through J’s toys) and throwing all the wrong things (like J’s toys) and generally making a mess of things. But, as M has started walking more and crawling less, it’s as if her brother sees her differently. She’s no longer the baby who needs protection and redirection; she’s the little sister who is playing on J’s team. They run through the house and push toys all over the place. They squabble and squawk and giggle from one end of the house to the other. J’s imagination is on fire these days, and he thinks of all sorts of creative activities for them to do, which generally involve imagining that they’re repair people of some sort in large trucks. As hard-headed and opinionated as M is, she must not fully realize that J is organizing her play; she’s just glad to be allowed on his team.

What made me notice how much the play around here has changed is how J talks. Everything is “we” now. (We’re hungry. We want to go for a walk. We like peaches! We do not like to clean. We love dogs, Mama. We want more apples, please.) All this “we” business is adorable.

But, J also speaks for M about how she’s feeling or what she needs, which I actually find extraordinarily helpful. I can’t always see her signing or hear her babbling, so she’d developed a habit of just screaming until I came running. Now, J translates what she wants and yells it in my direction (usually in the kitchen). “MA-MA! M says she wants more blueberries, please!” I also find his translations sweet because he sees her pointing to her blueberries and signing more and he thinks to add the please part.

As with everything preemie-related, I catch myself watching them and traveling back in time. Two years ago, I couldn’t get much of a word out of J, and now he’s not only expressing his own needs in long sentences and paragraphs but he’s also expressing his sister’s needs. What happened to my tiny babies?

That long Preemie Babyhood that consumed the better part of four years is officially over.

There’s No Such Thing As Perfection

I was pushing M in the swing at the park yesterday. In the swing next to us was a chubby, blonde toddler who was at M’s adjusted age, 16 months. My daughter is talking more. She’s slimmer. She looks like a girl, not a baby, in a tiny body. Yet, she doesn’t really walk. People are always curious about her age, because she doesn’t look like she’s 19 months old. And she doesn’t look like her 12-month body either.

I chatted with the other mama about all sorts of things, and we were talking about communication, which with toddlers can be so frustrating. I told her that J barely talked at 2 but that my niece knew 60 signs before she could talk well. I said it, while shaking my head, as evidence of how different children are, but I think she took it as so many new moms do, as evidence of her failings as a mother. She looked down and said, “That’s amazing. I wish I could do that. I’m trying to work from home and care for my daughter, so I just don’t have time for things like that.” I didn’t at all mean to point out her weaknesses or discover her insecurities as a mother! I had just admitted that my son barely said a word at age 2! So, I quickly said, “Oh, well my niece just took to it. She loved the Signing Time DVDs and learned so many signs from them.” I wanted to add that she was doing just fine as a mother. She was pushing a lovely, healthy, and obviously happy baby in a swing at the park, so she should be kinder to herself. I wanted to tell her that one of my insecurities is that I wish I could incorporate more projects and fun activities into our daily lives, but that the kids are so young and so active right now (especially my little troublemaker, M) that I’m exhausted just caring for them. At the end of the day, the house is filthy, the kids are filthy, and I’m splayed on the couch, totally done-in, and I have nothing to show for it. But, when did the bar for us become so high? As mothers, we’re not good enough if we stay at home or if we work or if we play constantly with our kids or if we let them entertain themselves or if we have structure or if we provide creativity. We’re always critiquing ourselves.

You know what? I dearly love my mother, and she wasn’t perfect. But, I wanted her when I was sick or sad or scared. I called her name at night, and I knew she would come running. I loved how smooth her cheeks were, how young her baby face (even in her 40s) was. She was feisty and hot-headed and sometimes strict with me. She wasn’t always on the floor playing with me, because she was cooking or cleaning or caring for my baby sister. But, she was always in my corner, she was always my advocate, and I always had the sense that she was nearby, just a call of “Mama?” away. Sometimes, as mothers we’re so worried about the job we’re doing that we forget that our kids don’t expect perfection. They expect love and for us to just try our best.

As preemie mothers, we feel even more guilt, because of all the things we feel we put our kids through in those early days and weeks and months. So, I’m sensitive to the other mama on the playground, pushing her daughter and thinking, “Another thing I’m not doing. Signing with my baby.” But you know what? None of us is perfect. We’re all just trying to do our best.