All Preemies Aren't Created Equally

M, a few days old

In the NICU, everything is relative.

The term preemie can mean a multitude of things: everything from a baby born at 36 weeks and 6 days gestation who weighs 7 lbs and never spends a night in the NICU to a baby born at 22 weeks who weighs 14 oz and spends 200 days in the hospital.

Sometimes, strangers tell me they know a preemie who was the tiniest baby they've ever seen--their "tiniest" baby was my two-month-old. M weighed exactly 5 lbs when she left the hospital at 60 days old. At her smallest, she weighed 1 lb. 15 oz.

In fact, I was our family's preemie until my kids showed up. I weighed 5 lbs 6 oz at birth and was born 4 weeks early. Everyone talked about how tiny I was, how my head fit in the palm of my dad's hand. Little did we all know that a whole baby can fit in the palm of a hand!

I remember when J was first born, I wanted desperately to know what his survival odds were, but I was too terrified to ask anyone. The doctors and nurses didn't like discussing a baby's prognosis because no one really knows. A 23-weeker can surprise you by coming home with no oxygen six weeks before her due date, and a 32-weeker can linger long after everyone thought she would go home. I knew a baby with a brain bleed whose doctor told his mother, as a way of explaining his brain damage, that he would play on the football team but he would not be the captain. Now, at 4-years-old he's Leader of the Pack, well above his developmental goals and smart as a whip.

Taking J's temperature when he was about a week old.

While J's odds of survival were around 80%, he had a 66% chance of having a disability at age 3; he has no disability. He was born too fast for steroid shots to develop his lungs; yet, he was only on the ventilator for a few days. He didn't catch his first cold until he was 17 months old, and his first serious illness was this spring as a 3.5-year-old.

How he did this well remains mostly a mystery to me. He was healthy in the womb, he was in the 70th percentile when he was born, and my obgyn was so proud of the fact that he was intubated immediately after birth so that he never went without oxygen. He responded well to the surfactant given to him after birth that helped his lungs inflate properly, which meant less time on the ventilator. Less time on the ventilator reduced the scarring in his lungs, which impacts lifelong respiratory health. One bit of good fortune translated into more good fortune, but that addition doesn't always work. Sometimes, it just seems that there's no rhyme or reason to the outcomes.

J is not the norm for a 26-weeker. In fact, our pediatrician loves to show him off to visitors in her office, always asking my permission to share his story. J shows us what is possible with preemies. A few times this year, I've seen the cost of saving preemies thrown around with so little consideration for what those numbers mean. Sure my children together racked up over $1 million in hospital care, but their excellent care at birth has hopefully paved the way for decades of healthy living in which they will need little healthcare. So what if it is expensive to save babies? I hate to see our priorities when we as a society say we are unable or unwilling to give babies a chance at life.

Much has changed in NICUs in the last 30 years that has expanded the possibilities for preemies. More and more kids like J go on to live relatively normal lives thanks to all the advances. But, what is surprising is that there is still so much disparity from one hospital to the next. Within my own town, two hospitals will attempt to resuscitate 22-weekers, while another one won't intervene until the baby is at least 24 weeks gestation. Sometimes, a baby's chances depend on the medical care available in those first critical minutes. And the disparity doesn't stop there. The quality of the doctors, nurses, specialists, and therapists can vary widely. Techniques common in one hospital are rare in another one, and conveniences such as bedside breast pumps might seem like perks when really they can alter the health of a baby at a time in their lives when breast milk is medicine.

So, my 26-weeker isn't someone else's 26-weeker. One preemie's path in no way defines the journey for other babies.

I'll admit that I am a preemie snob. Please forgive me. It's not just my own children but all the other babies I've met along the way who give me pause when a grandmother brags about her miracle born five weeks early. I don't doubt that baby is a miracle--all babies are treasures of good fortune--and I don't doubt that any hour with a baby in the NICU is a miserable one. It's just that it's challenging for All the Preemie Mamas to keep our mouths shut. We want to brag about the miracles we've seen, the things that shouldn't have happened, all the dozens and dozens of babies we watched work their way through the NICU who wouldn't have lived more than a few hours or days just three decades ago. Their accomplishments shouldn't be diminished by the preemie down the street who weighed 4.5 lbs at birth, was breathing on his own at 33 weeks, and spent only two weeks in the hospital. That story is amazing, but goodness could I tell you some humdingers.

Like the barely 24-week twins whose mother was prepared to lie about their gestation to make sure they were resuscitated at birth. Or the 26-weeker who came off oxygen at age 10. Or the set of quads whose mother was encouraged to abort two of them to increase their survival odds. The stories go on and on and on.

Preemie stories are just as unique as the babies who inhabit them, each one of them different and special.

Seriously, I should write a book...

The Preemie Lifestyle

There is a myth that when you bring your baby home you put the NICU journey behind you.

It's what we all want to believe when we're struggling through the emotions of having a hospitalized baby. We keep focused on that beautiful day when we'll peel out of the hospital parking lot for the very last time with the baby in tow. And it's a good thing that we have a goal as we trudge in and out of days in the NICU.

But, the crashing of fantasy and reality can be brutal.

After a couple of months of struggling through sleepless nights, a punishing pumping/breastfeeding schedule, and what I call the Two-Month Screaming, I began to fall into a depression. We were under our winter quarantine, I felt isolated, and the days were long and taxing.

I'll admit that I wondered to myself, "What have I done?"

Parenting is rarely what you imagine, envision, or daydream. It is both better and worse. But, when you start out with a baby in the NICU, you drain so much of your emotional reserves in those early days. I found that I had little left for the journey after the NICU.

I came to a realization when J was six months old and he was evaluated for therapy. A social worker had mentioned all the services available for preemies as we were leaving the NICU, but I had no idea the kind of delays J would have. He wasn't even rolling over at six months old. In fact, he didn't roll over until he was closer to 9 months old and had spent three months in physical therapy.

It began to dawn on me that leaving the NICU wasn't the destination or the endpoint. Having a preemie was a lifestyle. It involved Synagis shots and physical therapy and teachers who specialized in developmental delays. I wiped down surfaces with the zeal of a woman who feared one illness might kill her baby. Our entire family was vaccinated. My career disappeared into the background indefinitely. Getting J healthy was my singular focus. I felt that I owed it to him to give him as good of a start as I could, especially because I had evicted him from my body at 26 weeks.

Once I had M early too, this way of life really did become normal. I talk regularly with other preemie parents. I blog about preemie issues. I strategize on ways to help M catch up with her peers. Not a day goes by that I don't think about where we've been. Raising preemies is a lifestyle, at least while they're small children and maybe forever. The jury is out on where this journey goes, but for now it is all-consuming.

For a long time, I lived from one developmental goal to the next. I always focused on where we were going. But, sometimes we just need to slow down and appreciate where we are.

These children are hilarious and bright and energetic and enthusiastic. And so resilient. They could be poster children for all that is possible.

Would I see them this way if I hadn't witnessed their beginning? Holding your baby in the palm of your hand changes you. Watching your two-pound baby breathe all on her own challenges everything you've ever believed. I've written before about the magic of having preemies, and it is so true. For all the difficulties, some of our moments in the NICU could take your breath away with their beauty.

Victories are sweeter, because they are so hard-fought. Walking isn't just putting a few wobbly steps together; it's the pinnacle of an uphill climb that began at birth, it's the achievement built upon months and months of therapy. So what if everything takes longer, if it all seems so challenging, if sometimes I am so exhausted at trying to be a great mother? They are worth it all.

I didn't choose the Preemie Lifestyle; it chose me. And I wouldn't trade it.

More Than You Deserve

I woke up just as stressed this morning as I was yesterday and the day before. I am fed up with negotiating over the sale of our house. This morning, I felt like I was walking around in a black fog.

Then, I heard M in her crib, and when I went to get her, she was sitting in her bed. She smiled her bright, toothy grin and held up a doll. I asked her if she was playing with a toy, and I took it from her. I kissed it and handed it back to her. She pretended to kiss it. I looked at that precious, joyous gift of a child, and I could feel the black cloud lift. I picked her up, and she started patting my back with her little baby hand, as if she was just overjoyed to see me.

Sometimes, having kids is draining. Other times they give you exactly what you need. And some mornings, they give you even more love than you deserve.

Brake Lights And Bumpers

This is my first time selling a house. It will be our fifth out-of-state move but our first with kids. I thought I was managing the stress.

Last week, I was talking to J in the car, and I thought I had waited until the garage door opened. But, when the garage door reached out and bit the back of my car, I realized that it must not have opened all the way before I started backing up. My husband fixed the garage door, but we'll need a new brake light.

The very next day I locked myself out of the house. When my husband came home early from work to open the door, he found my keys. In the garage. So, really I wasn't locked out. And he didn't need to come home early.

On Monday, I started the week by backing into a car at J's school. In my defense, I was parked on a hill, and anyone who drives an SUV or a van knows that there's a huge blind spot behind the bumper. A car must have pulled right behind me just before I started checking my mirrors, and I never saw the car. I guess I'll try not to choke on the $600 for a repainted bumper.

I'm on a roll. And not in a good way.

So, I decided to get back on an exercise regime. I clearly need a better way to manage my stress, and walking is much cheaper than brake lights and bumpers.

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 not stupid. 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?