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!

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.

Modern Fatherhood

I said something to my husband last week that I almost immediately regretted. And the more I thought about it, the more stupid the sentiment behind it was.

He was frustrated with the kids, and I was frustrated with the kids and with him. I spouted off, "I don't think you're capable of taking care of both of the kids by yourself." (Is there any wonder where M gets all her attitude?)

Nope, not my finest moment. I apologized, and he graciously accepted. But, the statement made me think about the man I chose to be the father of my children and of our roles as parents. For now, I work inside the home, and my husband works outside the home. What I was taking for granted was that he defers to me on the day-to-day raising of the kids not because he's inept but because he respects me. He knows that I am the one talking to their teachers and scheduling therapy and putting them down for naps. I spend many hours a week alone with the kids, so I do know their always changing patterns and tendencies. But, his deference should never be mistaken for an inability to care for the kids or for his lack of involvement.

After all, he is the person who was much better than I was at changing palm-sized diapers with his pinkies. He was fearless in the NICU with those tiny babies, and that is the man I want my children to emulate.

This week, I've seen so much discussion on TV and online about modern fatherhood and how involved so many dads are. My own father has resented the image of dads on television shows and movies. He was never bumbling, and he was always present in our lives when we were little. He is still a guiding force for his adult children. Because of his example, a deal breaker for me in finding a partner was a man who didn't want children or who wasn't interested in being an equal parent. In a country where men have little to no guaranteed paternity leave, where they are disparaged for staying home with their children, and where changing tables are almost exclusively in female restrooms as if fathers don't change diapers… I should know better than to fall into a stereotype that demeans both my own father and my children's father.

So, I made a promise to myself. I will not say disparaging things about my husband in front of the kids, especially when it comes to his role as their father, because I want them to see parenting as a partnership and to have strong relationships with both of us.

(And as evidence of his capability as a father, my husband, bless him, is putting the kids to bed while I write this post.)

So, as Father's Day approaches, I just want to add my voice to the chorus of people praising involved fathers. Our society often portrays dads as bumbling when in reality so many fathers are excellent parents. And my husband happens to be one of them.

Writing A Letter, And Other Odds And Ends

I disappeared from the blog this week to take care of sick kids. Poor M has had her first serious illness--well, really it was a combination of three minor illnesses that sent her into a spiral. She had hand, foot, and mouth disease, which is so common among 18-month-olds, on top of an upper respiratory viral infection and an ear infection. Her body just freaked out on Sunday morning, and she had a febrile seizure and turned blue before we could get her to the ER. Honestly, I'm still struggling with the febrile seizure--even though I've been assured that the seizures themselves aren't life-threatening--and I can't even write about all that happened yet.

But, M is feeling better, which always makes Mama feel better!

I'm also trying to get our ducks in a row for our move at the end of the month. Though we've moved plenty of times, this is our first move with children, and I dread it. I mostly hate taking the kids away from their school and their friends, and I know it will be a challenge to keep things relatively normal for them during the actual move. I try to remind myself how flexible kids are and that this will be a good thing for our family.

My writing project for this week is to compose a letter to J for his 4th birthday, which is in a month. How did this idea just now dawn on me? I think I'll make it a tradition for the kids, but I really wish I had started it years ago. The upside to being the firstborn is that you get all the firsts and all the pictures. The downside: your parents learn as they go with you!

My letter idea is that it's a way to reflect on how the kids have changed in a year, what they love at a specific age, and all the funny things they say and do. I'm behind on editing photos, I gave up on baby books (I guess I understand why my mom left my baby book incomplete), and I should have finished J's scrapbook nearly three years ago. But, one thing I know I can do? I can write a letter.

Why Women Leave

Me, when I used to be a teacher

Last year, I read Lean In. I am a mother with a Ph.D., so a discussion about women in the workplace touches on sensitive issues for me. I keenly feel the decimation of my career--or, on an optimistic day, the delay of reaching my professional goals--so I don't really need anyone to remind me that I took my nine years of higher education with me when I left the workforce. And I agree that it is a terrible shame.

But, I always feel that the discussion about women leaving the workplace occurs in a vacuum. It doesn't take into account real life. Yes, in theory, I would have a tenure-track job, and I would be awesome at it. In my time at home, I'd also be a wonderful mother, wife, daughter, sister, and friend. And then I'd do some community service for good measure. In theory, my kids would go to an affordable, safe, enriching full-time preschool, and I would have no guilt about leaving them there. And in theory, I would make at least half as much as my husband, and his job would come with the flexibility to pitch in on all the extras having kids require.

That is not reality.

In her book, Sheryl Sandberg acknowledges that life's demands are complicated. But, I always feel that the conversation is one-dimensional. It lacks the curveballs that life throws us, and we all, men and women, have them. Nothing goes just as planned, and for many of us, we find ourselves on journeys that carry us away from traditional employment. I always want to know when the discussion about women deserting the workplace includes women who are battling cancer. Or caretakers of elderly parents. Or military wives whose husbands move every year, limiting their ability to find employment. Or mothers of sick kids. Where do we fit? Because women leave the workforce for all sorts of reasons, and it is simplistic to discuss us as one monolithic mass of disappointment.

My first love before I met my husband and before I had my babies was reading. I devoured books as a child. I grew into a grammar nerd, and by far the best hourly job I ever held was as a grammar editor when I was just 18 years old. I always admired teachers and how honorable the intention of teaching is. A great teacher really can change a person's life. Both my parents were teachers, at different points in their professional lives, and I think in my heart of hearts I always believed I would combine my three loves--learning, writing, and teaching--into a career. And I did, for a short time. I was going to be a professor, before I had preemies.

I never made a conscious decision to leave, and I have never made peace with the fact that I am gone. Never. So, to the woman at the academic conference who said ugly words of judgment and to the people in the grocery store who see me as a sweet, young, little mama--I am more than either of those characterizations.

Women like me may yet return to the workforce, but in the meantime, do you know what we're doing? We're giving back to the world around us. We're getting well and taking care of our parents and holding down the fort and watching over babies in the hospital. These jobs are not easy, and the pay does not come in the form of dollars. But, is everything in this world about money? Sometimes, the hardest jobs are the ones with no paycheck and no vacation days.

I was handed a set of circumstances, and I would not exchange them for someone else's. No matter how discouraged I may get, I am never sorry for the choices I've made. If I had it to do all over again, I would choose those two tiny babies: the ones who didn't ask to be born and who suffered greatly in their first days and weeks.

Lean in? What I want to know is: when I can lean in, will the workforce accept me? Will it accept all of us who left for our own very good reasons? Or will we be asked what we've been doing for the last four years because a resume can't define where we've been and why we left?

We still have prejudices in this country about what constitutes work and what makes a good employee, and I think any discussion about leaning in should also include the issues of affordable childcare, equal pay for equal work, paid leave, part-time employment, and flexible hours. We could do more as a country to retain good employees. And we could keep more women in the workforce. But, first we'd have to address why women leave.

And that answer is complicated.

It's Time To Move On

I think we sold our house today.

I won't trust that it's sold until we have the check in our hand, but in the short term, it really makes no difference. It's now time to begin rapidly packing up, shutting down this life we've made here. It's time to put all our treasures in boxes and pull up stakes and move to a place that I hope will become a final destination, the place my children will call home.

I hate moving, and it's always sad. This is our fifth out-of-state move in ten years. But, this move is different, and what is painful about this move is so different. It's not the friends I've made, because I haven't made many. It's not the people I see on a daily basis, because I don't see many. I'm not leaving a job behind or a school. The most important people in my daily life will all be going with me.

I am most sad to leave my kids' preschool. The teachers there have been fundamental in shaping my kids, in giving them confidence as well as knowledge. They have pushed my babies to high standards, encouraging them to achieve new goals. They have loved my kids, cherished them in a way I never could have expected. I was so worried to leave J that first day at school when he was a 16-month-old baby who couldn't crawl or walk or stand on his own. Literally, he couldn't stand on his own two feet, and now? He runs and talks and laughs. He has a pack of boys he plays with. He is independent and confident and more outspoken than I could have imagined two years ago when he wasn't speaking at all. The transformation in just the last six months has been phenomenal.

I am deeply saddened that M won't have the same experience. She has only had four months at the school, but she already has such a joy and exuberance for learning. Her teachers thrill her. She watches for their reactions, and she soaks up their attention. M looks straight into the face of each little friend in her class with such excitement, as if they're all her new best friends. I have no doubt she would love for me to just leave her at school everyday. And I would, if I could.

And our physical therapist. Our pt. Oh, how will I leave her? These last 3.5 years, she has known both my kids better than most of the people in their lives. She knows their personalities. She has been aware of the big and little things happening in our lives. She is one of the only friends I have here, one of the few women I see on a regular basis. During this time of such loneliness for me, she has been an island of reassurance and kindness. I don't have to explain what has been hard about this life to her, because she already knows. But, she's also a steady reminder that other families have it so much worse. She gives me the freedom to fret and question and wonder, but she also has great suggestions and advice just when I need them the most.

All the people I am dreading hugging goodbye are related to this difficult and beautiful journey we've been on. I swear everything about this place from the time I arrived five months pregnant and only six weeks away from delivering J until this very moment has been about having preemies. This entire chapter of my life's book is about the magic of these kids.

And it doesn't matter how ready you are to start writing a new chapter, closing the book on a place is difficult. Especially when it's the place where you had your two tiny babies.

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...