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.

Seeking a Second Opinion or Finding a New Doctor

Heart Problems

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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.

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!

12 Tips For Getting Synagis Injections Approved

My most recent article on Preemie Babies 101 posted yesterday. Here’s an excerpt:

©tiverylucky/freedigitalphotos.net

©tiverylucky/freedigitalphotos.net

Getting Synagis injections approved by insurance companies can be cumbersome, but for me the threat of my babies catching RSV was always worse. So, I stumbled my way through several Synagis approval scenarios. Hopefully, these tips can make your Synagis quest a little easier.

But first, it’s important to understand that there are general guidelines that exist to determine who gets Synagis injections. In the past, babies with a history of prematurity, lung or heart conditions, or extensive hospitalizations who were less than 6 months of age at the beginning of RSV season have been covered. Preemies born at 28 weeks or earlier who were less than one year old often qualified. Preemies or other babies with significant health concerns who were in high-risk situations, such as full-time daycare, exposure to other young children, or being a multiple, sometimes received Synagis injections up to age 2. At the time of this writing, changes to the guidelines are being discussed, so follow up with your pediatrician about whether your child qualifies.

  • Your pediatrician should be supportive of your quest to get Synagis. At a minimum, he or she should be willing to discuss Synagis as an option and why your child may or may not qualify. You are fighting an uphill battle if you have to fight your pediatrician in addition to the insurance company. If your doctor is unfamiliar with Synagis, that person might not be the best fit for a preemie who needs many special considerations in the first years.

Please click here to read more.

Mama Bear

One evening, about a month into J’s NICU stay, my cell phone rang, just as my husband and I were walking into our house. We had left the NICU about an hour earlier, and then we’d sat in rush-hour traffic. So, I was just hanging my purse on a chair when I heard my cell phone.

I saw that someone from the NICU was calling, and my stomach did a free fall. We rarely heard from the NICU; they called maybe four or five times over the 91 days J was hospitalized. I was generally able to repress the fear that when the phone rang it would be the NICU telling us something was wrong, but I still jumped every time I heard my phone ring. And now it really was the NICU on the phone.

When I answered, it was a nurse calling (oh heavens), and though blood was rushing to my head, I managed to hear her say that J was fine but that the cardiologist wanted to speak with us (oh heavens).

We had been told weeks earlier that J had a heart murmur but that it wasn’t the kind most preemies have and that heart surgery would be unlikely. That week a nurse had informed us that a pediatric cardiologist was scheduled to see J again, but the NICU rarely communicated any specifics about specialists—they probably weren’t always entirely sure when a specialist would make rounds.

So, on that evening, not only was I surprised to get a phone call from the NICU, I was completely unprepared for any news from a cardiologist. The cardiologist on the phone was not the kind, quiet man I had seen passing through the NICU. It was a woman I’d never met, and she had such a thick accent that I had a difficult time understanding her.

She told me that J had pulmonary stenosis, which meant that one of the arteries into his heart was too narrow. It was causing a pooling of blood in his heart, which accounted for his heart murmur.

And that is about all the information I got.

That’s it.

I had what felt like hundreds of questions hit me like sand in a dust storm. Would he need surgery? Would he live a normal life? Could he be active? Would this condition worsen?

I kept thinking that we’d weathered so many concerns for his health in the early days. He had proved to be so healthy for a baby born 14 weeks early. And now this.

When I began to ask some of my questions, the doctor cut me off. I was confused. Why would someone call and give me a diagnosis and then refuse to provide any information about it?

So, I asked if her written report would be available in J’s hospital records, so that I could read it for myself.

J’s medical records were a sore spot for my husband and me. Parents were not supposed to open the binder of medical records that sat openly on the table next to our baby’s bedside. Any Tom, Dick, or Harry from the hospital could pop by and open it up to see any number of private facts, but J’s own parents—and legal guardians—were supposed to ask permission and then wait for a doctor to watch us while we opened the binder, just in case we had questions. Some nurses were rude and vigilant in their enforcement, while others encouraged us to access the information in it at our whim, which completely confused us in our early NICU days. We were never formally told of the policy, only chastised when we failed to understand the Golden Rule: do not open the binder. When we realized the extent of the dysfunction over medical records, it became an undercurrent of irritation for my husband and me. I know that J’s medical records legally belong to me. I have access to them whenever and wherever I choose, but we walked a fine line. I felt that ruffling feathers at the NICU and having a knock-down drag-out over medical records was an unnecessary distraction from J’s medical care—unless it became a crucial fight. So, for the most part, my husband and I just waited until no one was watching, and then we opened the binder to check for the most mundane facts, like when J last pooped. “The Chart-checkers” is what we named ourselves.

Anyway, I knew the cardiologist would write a report, and since she was less than forthcoming, I thought I’d just go to the trouble of requesting permission from a NICU doctor to read the report.

But, what she said stopped me. Cold. Before I could say another word.

“I’ll write a report, but you won’t understand it,” the cardiologist said, with an unexpected harshness.

Not: you might not understand it. Not: it will be hard to understand. Nope, my incompetence, it seemed, was a sure thing

For a second, I thought maybe I had heard her wrong. My brain kept trying to process her response, and then when it finally did, my blood pressure shot off like a cannon. This time it wasn’t swirling blood in my head and a sinking stomach. I just felt fire. A raging fire inside my head.

First of all, I’m not stupid. I know I’m not perfect, but I’m darn sure about one thing: I am notstupid. I not only deserved information on my baby’s diagnosis, I needed information, because I would be the one taking him to follow-up cardiology appointments. It was my legal right to see the report, regardless of whether someone thought I’d understand it. And, um, I can read. At that point, I had almost earned my Ph.D., which would certainly qualify me to read. I was plenty capable of asking for clarification for something I didn’t understand, and, seeing as how I wasn’t supposed to read any medical records without supervision, I could ask the doctor or nurse standing over my shoulder for help.

I could feel myself coming unglued. All the emotions I had bottled. All of the frustration and sadness that I had shoved into the dark recesses of my brain. It was all escaping and wreaking havoc on what little shred of patience I had left for a pediatric cardiologist who had been practicing medicine just long enough to forget how powerful her words were.

I’ll admit that I’m pretty sure I screamed into the phone, “You don’t think I will understand it? I won’t understand! I can ask if I have a QUESTION!” And then I pulled the phone away from my face, as if I could look her in her emotionless eyes. I shoved the phone back against my ear and yelled, “I CANNOT talk to you. You’ll have to talk to my husband.”

She probably had no idea why I was so angry.

It was the best I could do. I had completely flipped my top, and I knew there was no going back. Maybe in person a look of kindness from her would have slowed my rage, but over the phone, I could see no sympathy, and all I could hear was her stunned silence. I knew that I was so offended and so hurt that if I kept speaking with her, I would just scream obscenities, which would do nothing to help J. So, I threw the phone at my husband, and I told him, through gritted teeth and plenty loud enough for the emotionally-removed pediatric cardiologist, “She won’t answer my questions, and she doesn’t think that I’ll understand.”

My husband, while furious on my behalf, was patient and deferential. He was able to extract a few more answers from her. Just a few.

The next day I opened the medical binder, in front of God and everybody, and I plunked myself down in the chair next to J’s bedside to read the report. I saw a nurse or two look askance at me, but this time I wasn’t sorry. I wasn’t going to wait a few hours for a doctor to find time to be present. One nurse passed by and kindly asked if she could help, which was, I’m sure, her pleasant way of reminding me that I was supposed to leave the binder closed. I explained that we wanted more information about my son’s diagnosis and that the doctor was less than forthcoming, so I was reading her written report. The nurse seemed to understand, and she left me alone without reprimanding me.

The report was simple. It listed J’s condition and explained that it had worsened over his short lifetime. It recommended a cardiologist see him again before he was discharged and that he be followed after he left the NICU. He was in no immediate danger, but it was cause for concern. I was relieved. Just seeing the explanation in black and white helped fill in the many gaps, and I had a better understanding of J’s condition and what questions I needed to ask his doctors and nurses.

And I understood the report perfectly. It seems that I do, in fact, know how to read.

We never spoke to that pediatric cardiologist again. From then on, we saw her partner, the kind, quiet man I had seen in the NICU. He didn’t say much, but he always smiled. And he always asked if I had any questions.

I think one of the hardest parts of having a sick child is being an advocate. It can be gut-wrenching, exhausting, and frustrating. But, looking back I’m not sorry for any of the times I was Mama Bear. Not one. I’m only sorry for the exact opposite, the times when I wasn’t Mama Bear enough. Which is another story for another day…