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!

4 Years

The Timing That Is Not Our Own

Closing on our first house

My husband and I are living in our fourth city as a couple, and as we prepare to move again, I can’t help but see a pattern to all the moves. With each transition, we changed a bit. We met new people, and we changed jobs. Our accomplishments and failures varied. Each place asked different things of us.

I see very clearly why we were here in this place, directly between a city with excellent NICUs to our north and a college town with an amazing preschool to our south. When we first came to look at homes before we moved here, I was newly pregnant, and our realtor had to remind us to view each home as parents. Did the house have a yard? Could you cook in the kitchen and see children playing in the living room? We had wanted a cottage near downtown, but instead we chose a comfortable home in the suburbs because it was close to my husband’s new workplace. We didn’t concern ourselves with the ratings of area hospitals or preschools, because we had no idea what lay ahead of us.

Almost from the moment we arrived with the moving truck, I was unhappy. Nothing about this place felt like home. In the six weeks before J was born, I wondered what we had done. And I knew my feelings weren’t the moving jitters that settle down after all the boxes are unpacked. I had moved enough times to sense immediately that this place would never be Home for me.

But, when we have kids, it’s not really about us, is it? With four years of perspective, I see vividly that this place was never about my husband or me. It was about what our children would need.

And, oh, how their needs have been met. Obstetricians who performed skillful emergency surgeries. An amazing NICU filled with dedicated professionals who cared for our children in all the ways we couldn’t. A pediatrician who has rejoiced with us. A speech therapist who helped J find all the words that jumbled in his head, frustrating him in ways he couldn’t communicate to us. A physical therapist who has known my babies since they were stranded in newborn bodies and who has been the only friend I’ve seen on a weekly basis for the last 3.5 years. A preschool with more devoted and talented teachers under one roof than a parent could ever expect, a place that has become a second home for my kids. These people have been life-sustaining in so many ways, and they have been an emotional oasis for all of us.

The days have been so very long, and I’ve wasted plenty of time yearning for new adventures for our family in a place that feels more like home. But, I’m amazed to discover as our time here draws to a close that it hurts to leave. This was the home of our babies, the anchor during difficult storms, our prison during winter quarantines, and our refuge during days that sucked the life out of us. Leaving here closes the chapter on tiny babies and NICUs. We came to this home as a couple, and we leave as a family.

This place has taught me about timing. We are not the masters of time, no matter how much we think we understand the plan. Having two tiny babies was never in my plan, but I would never change it. And living here might not have been of my choosing, but it was never about my husband and me. Our reason for being here was those babies who needed so much love and care in their early years.

And this week I’ve had one final lesson to underscore the point. Since M was born nearly 18 months ago, I’ve been saying that I didn’t want to leave her physical therapist until she could walk.

M took her first two steps at home this week, and she took four steps in therapy today. She is beginning to walk, the week before we’re leaving.

Sometimes, it is inexplicable how neatly the loose ends of life are tied.

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…

Waiting For the Shoe To Drop

A month ago, J was as sick as he’s ever been since his discharge from the NICU. For a 26-weeker, he has always been amazingly healthy, even in the NICU. We have had plenty of frustrations and roadblocks, but he has never been truly ill.

In fact, he went an entire year without a sick visit to his pediatrician.

But, this year he had one cold after another cold after an ear infection. All winter long. I guess I shouldn’t be surprised. He attends school for twice as many hours a week as he did last winter, and now he has a younger sister who shares germs with him. The cold and flu season was also much longer because of the colder winter.

So, it was nothing new to have two kids with ear infections in late March. I took them to the doctor on a Tuesday afternoon, and both kids needed antibiotics. M started looking better almost immediately, but J became listless on Wednesday, which has never happened before. He rarely runs a fever, he has never lost his appetite, and sitting on the couch all day is the exact opposite of the kind of child he is. But, I really became alarmed on Wednesday night when he had trouble sleeping, so on Thursday morning, I took him back to the doctor. I was positive that something was wrong.

And I was right.

Apparently, the antibiotic was working on the bacteria in his ears, which looked much better, but while his body was busy with that infection, another bacteria attacked his lungs. Within 36 hours of seeing a doctor for ear infections, he had developed a completely separate case of pneumonia.

So, the doctor gave him a shot of Rocephin, a high-powered injectable antibiotic, and she changed his prescription to a stronger oral antibiotic.

But, he didn’t get better. In fact, all of Thursday he continued to go downhill. I called Friday morning and made the first available doctor’s appointment, which, of course because I was in a panic, was at 10:45 a.m. J’s fever was nearly uncontrollable, and his skin was so pale it was nearly translucent. His lips weren’t blue–a sign of danger I learned in the NICU–but he was wheezing. So, I called the doctor’s office back and told them that I was bringing him right then.

The doctor saw him immediately, and she gave him another Rocephin injection, a dose of steroids, and two breathing treatments.

That night, I began to see him turning a corner.

I learned at a follow-up appointment the next week that his case of pneumonia was aggressive and that if he hadn’t responded that day to all the medicines, she would have hospitalized him.

What amazed me was not how vicious pneumonia can be, because I was hospitalized for it twice as a kid. What shocked me was how fast J went from being mildly sick to dangerously sick. I asked if his prematurity had anything to do with the rapid progression of the pneumonia, and the doctor told me no. He’s never showed signs of lung damage or asthma before (amazingly), and now that he’s nearly four, many of his risk factors for illnesses are no different than other children.

Whatever made J so sick was just an awful virus or bacteria. J and M had mirror illnesses, but she had her last Synagis shot the day I took the kids to the doctor for ear infections. She improved immediately, so maybe the Synagis shot boosted her immune system. Or maybe it was just a fluke that J caught something else.

I thought I was managing the stress of having a sick child, but I’ll admit it: I almost had a nervous breakdown when the nurse put the oxygen mask on J for his first breathing treatment. It was another of those NICU flashbacks! I was transported back to that time when he was so tiny and his breathing was so labored and I couldn’t see his face for all the tubes. But, what kept me from teetering over the edge was J’s need for me. I didn’t want him to know that his illness was scary.

When we left the NICU with J, I always felt like I was waiting for the other shoe to drop. It was inevitable. All of our good fortune would catch up with us. I just knew it. A baby can’t be born as early as J under such emergency circumstances and have no complications. It just seems impossible to me.

Even more miraculous is that when the other shoe did drop and J had a terrible case of pneumonia, he wasn’t a baby or even a toddler. It wasn’t the result of RSV. And the doctor didn’t treat him any differently because he was a preemie. He was just a kid who got really sick.

Do you know what that means to me?

Fraud Mama

In the hours and days and months after J was born, I was a fraud. A fraud of a mother. Certainly, mothering takes all shapes. No one mother is the same, and no one mother does it just right. But, in all of the ways I believed I would be a mother to J, I was nothing.

For starters, there was his birth at 26 weeks. Boy, that was a flop. I’m pretty sure you’re supposed to at least get to your 9th month.

Then, there was the manner of his birth. Emergency C-section wasn’t the route I had planned. I’d chosen a highly-dignified yet hard-fought natural birth in which I’d be quite the champion. Instead, I turned out to be a chump at labor and delivery.

To add insult to injury, I had J at a hospital that could only care for babies born at a minimum of 32 weeks. It never crossed my mind to seek out a hospital with a NICU any larger, since I was planning on that full-term, natural birth thing. So, just hours after J’s birth, he got his first ambulance ride to a hospital 30 minutes away. He now loves anything with wheels, so surely I get points there?

I’m pretty sure I lose ground on the next one, though. I met J for the first time just after my anesthesia wore off. The doctor wheeled him to my bedside, and then he was gone. I didn’t see him again for two days. His own mother didn’t visit him–couldn’t visit him. Other family rushed to town to see the tiny baby, but does that make up for missing a mama?

And then there’s all the bonding we missed. I didn’t hold him until his 5th day, and even then, it was just kangaroo care, not at all what I’d had in mind when I pictured snuggling my newborn.

In my mind, this list went on and on. I accounted for every mistake, every failure, every way I let J down. It began at his birth and continued for two and a half years. Years.

Of course, I loved him with my whole heart. I sacrificed in every way. I gave until I had nothing left to give him. And I walked through the world, unable to relate to most mothers I met who had birth stories I envied. Every, single subject was painful for me to discuss, from breastfeeding to walking, talking, and eating. Every thing I knew about parenting revolved around prematurity, and nothing I knew seemed to have a place in a regular parenting conversation. I knew better than to compare myself to other mothers, and I knew it was unfair to blame myself for J’s birth. But, I could not forgive myself.

Until M.

She is the result of preeclampsia, another surprise for me. She is a preemie too. She is sweet and giving, a ray of sunshine, people have said. She and J will have each other. With her birth, the entire dynamic changed. This story is no longer about J and me, about what I did or didn’t do; it is now the story of our whole family. Prematurity is a bond we all share. It is a uniter, not a divider. And, slowly, as the shock of M’s arrival waned, I realized so did my shame.

When I talk to mothers in the NICU, they are so full of anger at themselves. It is painful for me to witness because I want to save them. I spent so much energy punishing myself, but it’s not an anger I can quell in someone else.

Every mother has to reach her own place of forgiveness, in her own way.

Somewhere along the way, in the middle of long days and longer nights of parenting two preemies, Fraud Mama disappeared.

Here I am, in her place.