This Beginning

My children are polar opposites. One is a boy, one a girl. One is reserved and sensitive, the other loud and gregarious. One an introvert, the other an extrovert; he needs quiet as much as she needs noise. One is careful and cautious, the other a very risky risk-taker. So, I guess it stands to reason that these two completely separate individuals would be born in polar opposite seasons, J during the middle of a long, hot summer and M born during the dead of winter.

The other day, I had the sensation that M was in the NICU again. The weather was cold and dreary. My husband was driving us home on the highway. I was in the passenger seat of the car watching the pavement rush past my window. The sensation that I was somewhere else was overwhelming. I could picture almost the entire 30-minute route to the NICU. I could feel the cold wind on my face as I walked from the parking garage into the hospital. I remember how my body hurt, how my blood pressure was so unstable that I had to recline the seat in the car to lower it. I could smell the NICU, hear the NICU, feel the NICU. My heart ached as if I were leaving M again, tiny in her isolette, and walking into the cold night for another long ride home.

I don’t think it will ever go away. A part of winter is now bound to those cold days, 59 of them, when my baby was away from me. And on hot, sticky summer days, I am transported to the same NICU but with a different baby. The summer belongs to J.

Sometimes, I marvel that the only thing my kids seem to share, besides their parents, is this beginning.

Confessions of a Preemie

I just saw a wonderful post written by a NICU nurse that outlines all the differences between what we expect from a full-term baby and the reality of a preemie. I remember in those first days with J being completely swamped by all the new terminology, the murky expectations, and lots and lots of fear. Over time, just like any other new mama, I began to understand the basics of J’s care, what he wanted and needed, and what made him special and unique. For preemies, though, there are so many variables that make understanding your tiny baby challenging. I hope Nurse Jodi’s explanation can help! Here’s the link to her original post: Confessions of a Preemie.

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.

To All the NICU Dads…

You are just what that tiny baby needs. With tender fingers and strong hands and with sweet words in a deep voice, there is no one like you.

Don’t forget how important you are.

Journaling in the NICU

I’ve been inundated with the exhaustion that only moving out of state with two little kids can provide, so I haven’t been writing. But, my most recent piece “The Power Journaling in the NICU Can Give You” appeared today on Preemie Babies 101. It’s about my experiences journaling in the NICU. Thanks!

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…

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…

The Portrait of a NICU Father

Today has been a disappointing day for my husband, for professional reasons, and it brings to the surface something that I’ve had on my mind lately.

This blog is usually about me and my babies and our struggles. But, that’s a lie. It’s been unintentional, because my writing is from my perspective. But, to even give the illusion that this journey has been anything less than a partnership is to give the wrong impression. The idea that I am somehow a fighter with all my pumping and sleepless nights is wrong, because I was never in it alone. I wasn’t alone in the  hospital. I wasn’t alone during all those high-risk appointments. I wasn’t alone in the NICU. I was never alone, because my husband was always present, even when he wasn’t physically there. He was always supportive, always positive, and always encouraging. He was always my friend. Even when the stress of the situation tore at us, I never doubted his loyalty to our cause.

It makes me angry when the world treats him as anything less than a hero. Furious, really. Because they do not know him as I do.

He is the extraordinarily gifted athlete who never brags. He is the faithful employee who demands little praise. He is honest, except when he thinks he will hurt someone’s feelings. He is more than nice; he is kind. I use my husband as a marker for my own impressions of people because he likes nearly everyone, and if he dislikes someone, I know to steer clear.

My husband is the man who built an entire deck, fence, and pergola from scratch with only occasional help from his father and his father-in-law. He designed it, and he made it happen, while our son was in the NICU and during his first stressful months home. How did he find the time and where did he find the willpower? That is the man he is. If he starts something, he will finish it, and not only will the final product be functional but it will be beautiful too. Sometimes, it’s a shame his job requires so much of his mind and little of his handiwork, because he is gifted at much more than just finance.

My husband is so smart, but he will never tell you so. He is handsome, but he doesn’t see it. He is talented, but he’s always looking to improve himself. He is fiercely competitive and yet compassionate too.

But, the most amazing thing about him is that he is the sweetest father. His son worships him, and it’s by no accident. His daughter squeals when she sees him. They adore him, because kids are smarter than adults. They know a treasure when they see one.

How did my husband handle the burden of working in one place with babies in the hospital in another town? I won’t sugarcoat it because it was terrible. But, he managed the balancing act better than I could have ever imagined. During this last year, he performed incredibly at work, even with a toddler at home and a baby in the NICU. Do the people at his company even know that he succeeded beyond all expectations while his home life was in crisis? I expected so much out of him–too much, some might say–but he never buckled. He always kept moving forward, because that’s the kind of man he is. He doesn’t complain, and he doesn’t pat himself on the back; he just gets the job done.

I don’t know about other NICU fathers, but I am quite sure I’ve underrepresented his role here. And I am sorry. In sorting through my own emotions and struggling through some of the baggage the NICU left me, I failed to write about how I fell in love with my husband all over again. We don’t have many date nights, and sometimes we hardly have time to talk. I hope it won’t always be this way, but how can you not admire a man who will reach fearlessly into an isolette to change a tiny baby with his fingertips? Because here’s the truth: my husband was better at the NICU than I was. When I shuddered to touch the baby, when I faltered, when I could not find the strength to go on, who was there to encourage me? My husband. He was the one who never declined a chance to touch or hold his baby. He was all-in, from the very beginning. He taught me how to touch J during my first visit to the NICU. He taught me how to change those terrifyingly tiny diapers. He told me not to be afraid to love that baby. He was brave and tender, all at the same time.

During moments of crisis, how was I strong? Because I had the support of a lovely man.

How the world judges him, I can’t change. But, I hope he knows his value when he’s home with us.