Time Away

Time Away

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.

Perspective

M a few days after she came home

M a few days after she came home

I saw a friend’s preemie for the first time today. Her tiny preemie body reminds me so much of my babies, especially M, and I told my friend just that. But, I didn’t tell her that that little preemie body brought back such a rush of emotions, good and bad. It wasn’t so long ago that I was in her shoes, or shoes like hers. Just 18 months ago, I had a tiny, 5-pound 2-month-old at home. As stressful as it was, that time was so fleeting. Even then, I’d watch her sleep, and I’d say to myself, “Soak it in. She won’t be 5 pounds forever,” because with J it sure felt like forever but it didn’t last. Though M didn’t gain weight for three weeks after coming home, she did gain, and now she’s my wild thing, so mischievous and full-of-life. The two images crash in my minds eye, that fragile baby and this wild girl.

Sometimes, I wonder if I’ll escape the shadow of the NICU. It finds me even in the most joyful moments. Actually, that is its home, because every joyful moment is made more so by the knowledge that it all could have ended differently. It makes me clutch my children in parking lots and kiss them a few extra times at night and sneak back into their rooms at night to watch them sleep. It makes me quicker to apologize, and it also makes me quicker to challenge the kids in the ways they need to be challenged. If I hadn’t spent the last four years with babies in therapy, would I assess their development they way I do? Would I be frustrated that I’m a stay-at-home mom, when I never planned it that way? Would I look people in the eyes when I know they’re suffering and tell them that I can’t fix it but I wish I could?

It would all be different, but then none of us–our entire of family of four–would be who we are now.

I don’t think I will escape the NICU, and maybe I shouldn’t try. After all, the whole reason I relish M’s ferocity in life is because when I met her all she could manage was a kitten’s mew. Perspective is everything.

M now

M now

 

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.”

Seeking a Second Opinion or Finding a New Doctor

Heart Problems

©digitalart/freedigitalphotos.net

On Friday, I was over at Preemie Babies 101 with a blog post about second opinions. Here’s an excerpt:

You know that feeling when you’ve just left the NICU after a long day, your cell phone rings, and you recognize that the number is the NICU?

My husband and I had just returned home from the hospital. I knew my son was scheduled for a follow-up cardiology exam because of a heart murmur, but since so many preemies havePDAs, I really wasn’t concerned.

The NICU nurse on the other end of the line told me that the cardiologist wanted to speak with me, and before I knew what had happened, I had a diagnosis. And it wasn’t a PDA. I had no idea if it was life-threatening or what J’s prognosis was. I was shell-shocked and nearly speechless. As I stumbled through my questions, I realized quickly that I was getting nowhere because the pediatric cardiologist had no interest in speaking with me. So, I asked her if she was writing a report to go in J’s records. Her answer?

“Yes, I’ll write a report, but you won’t understand it.”

The rest of the blog post is available at Preemie Babies 101.

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!

The Open Wound: Having More Children

Family Pic

In the months after J’s birth, I struggled with what had happened, how suddenly he had entered our lives. I felt paralyzing guilt that I, his safe keeper, had tossed him into the world so early. Before J, I had been the preemie in the family; born at 36 weeks and weighing 5.5 lbs, I had been the success story. It never dawned on me that in a family of healthy pregnancies and healthy babies, I could have a baby born 10 weeks earlier who was half my birth weight.

In the months after J came home, the isolation almost did me in. We had moved to a new city six weeks before J’s birth, and now the timing of it seems spectacularly orchestrated. But, in those lonely winter months, I felt used up, spent, hung-out-to-dry.

As one hard day slipped into another, my baby grew, and then he thrived. We thought it would be a good idea to try having a full-term baby. No one could say what would happen, and everyone said the next time would be different.

And she was.

Again, there was the shock and the disappointment, but this time there was fear not just for my baby but for myself. Preeclampsia is a killer, and anyone who has had it will tell you that it feels like a killer. In the hours before M’s birth, I felt my body coming apart, and because I was already J’s mother, I was terrified at the thought that I would lose the chance to mother him.

I’ve said before that having M freed me from guilt. What has happened defies all reason and is beyond all logic. It makes no sense. And after another NICU stay, I found myself remade. I let go of the doubt and guilt. In so many ways, M healed me.

Except for one: her birth made it clear that I had no business having more babies. It remains an open wound for my husband and me.

I always wanted to have children. I always envisioned being a mother. I always thought I’d have three kids, maybe four and at least two. So, here I sit the mother of these two lovely children, blessed in every way. The logical feeling would be peace; the obvious reaction would be acceptance. And I do have peace about how I had my babies. I cannot separate having preemies from being a mother because it is all intertwined in a lovely chaos. I’m usually a pretty clearheaded decision-maker, and obviously, I shouldn’t tempt fate by having a third biological child. My husband and I already made that decision, with very heavy hearts, last year. But, the truth? The truth is that I am not the least bit mollified by having a boy and a girl. Sure, life might be simpler with two children. I am plenty busy with a bright future ahead of me. I should put my baby-rearing days in the rearview mirror and be glad for it; after all, the last four years have been brutal.

The problem is that it doesn’t feel right. It’s been 19-months and counting, and I still have no peace. I do not feel complete. I’ve donated my baby clothes and consigned my baby toys. I’ve been praised for having the All-American family. But, it still feels like a knife in my heart when people tell me I’m lucky to be done with my childbearing. This decision was never of my own making, and in fact, my husband and I have already agreed that if the decision were ours to make, we would choose another baby.

So, I will say it. I will say the word. Adoption. I can’t say whether we’ll choose it, or whether it will choose us. I can’t say when or how. I don’t know. Maybe never. All I know is that I feel that there is much more to our story. I feel that there is room in our lives; maybe not now, with a wild toddler still dominating the show. But, there is a maybe. Most people with whom I’ve shared this sentiment don’t warn me away from adoption outright, but they don’t encourage it either. I assume they love us, and they’ve seen how we’ve struggled. I’m sure they think our lives will be simpler if we don’t choose such a complicated road. But, I am not the woman I was four years ago. I have changed. What once terrified me is now my normal, and I feel perfectly suited–and even called–to mother another preemie.

In fact, as I write this, I’m simultaneously dredging up difficult emotions and being entertained by a toddler trying on a red Thomas hat and squealing “PEE-PIE” as my eyes meet hers. I have come to see this messy life as such a treasure. Sure, traveling with little ones is trying, much of our house is infested with crumbs and goodness knows what else, and my husband and I don’t get many date nights. But, life is joyous and sticky and full of love. I am witness to miracles on a daily basis, and I’ve fallen in love with being a mother–which is the total opposite of my dark days as a new mother when I cried to my best friend that I didn’t know how I’d go on. Sometimes, you have to be torn apart and thrown asunder to be remade.

So, back to my point. I guess I’m surprised by the reaction, by the stigma against adoption. Just like I always planned to be a mother, I always considered adoption. I discussed it with my husband before we were married. Though we’ve arrived in this place from a journey we never expected, the possibility of adoption isn’t really a radical idea for us.

Maybe more time will bring more peace. Maybe we will feel our family is complete in another year or two. Certainly, our lives are full, and adventuring down an unknown road is frightening. But, when did anything in life become certain? All I want is the freedom to consider the future of our family. Whatever decision we make will be mulled, as we generally mull all of our major decisions, certainly ones of such magnitude. Sometimes, it feels like because we had sick babies who survived, we’re supposed to accept our fate and not want anything more. I think that’s a universal preemie parent frustration, the sentiment that we’ve already challenged fate and won. I would never turn to a family with several healthy, full-term children and tell them to quit while they’re ahead.

The worst decisions I’ve ever made have been fear-based, not doing something because I was too afraid. The best decisions? The ones that involved me jumping off metaphorical cliffs and hoping for water down below. I refuse to live my life scared, not in spite of the last four years but because of them. We were spared nearly everything I wasted my time fearing, and all the things that happened were outside of my realm of possibilities. That will teach you to stop living scared.

So, all I’m saying is the your-family-is-complete topic is extraordinarily painful. So many wounds surrounding our preemies have healed, or at least have begun to heal. But, that one, the one about the size of our family? It is still an open wound.

And nothing about the size of our family has been decided, yet.