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.

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.

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?

Why We Walk

I never participated in a charity walk or race before my kids were born. Sure, I donated to other people’s causes, and I volunteered my time. But, I never directly participated in fundraising for a national charity.

This will be our fourth year to walk in our city’s March for Babies fundraiser for the March of Dimes. Because we are moving this year, it will likely be our last.

Why do we participate? For many reasons. The first year we were just coming out of a very long nine months. J was born 14 weeks early, and then he was hospitalized for 3 months. He came home in October to RSV season, and we were quarantined for five months in a place where we had no family and very few friends. During that winter, I lived for the March of Dimes walk. In the spring. When our lives would finally thaw and we would begin to operate as a normal family. When I could take my son into public and, for the first time in his 9 months, I could show him off. When people would see me as I was: a new mother. When we could go to stores and restaurants and sporting events and all the other places I’d dreamed we’d go during those months of isolation.

That first March of Dimes walk was a chance to enjoy the sunshine and warm weather with friends we’d made in the NICU. They were like us: pent-up, exhausted, emotionally-spent, fragile. But, they were also like us: deliriously happy to reenter civilization, with healthy babies.

And I’ll be brutally honest: That first March of Dimes walk was a chance to actually celebrate. To breathe. To relax and enjoy being a family of three. We had been in survival mode for so long that there had been little time to celebrate. And, if I’m being truthful, other than having the support of our parents, we had felt alone during those nine long months. So many of our family and friends were scattered in all the places we’d lived, and their physical distance often translated to a distance emotionally. They had no idea what our daily lives actually looked like. And though I’m sure they cared, we felt that little surrounding the surprise birth of our son had been celebratory. There were no showers, no parties, nothing to mark the homecoming of our miracle. And if I’m being really honest, I was terrified for a long time to celebrate J. He was a 26-weeker. Anything can happen to a 26-weeker in the NICU, and all through RSV season, I held my breath, praying that an illness wouldn’t unravel all the health he had worked so hard to gain.
I’ve often wondered how my son was so fortunate. How could he have no lung damage and be born so early, without the benefit of steroids to strengthen his lungs for the ridiculous task of breathing 14 weeks too soon? How? As I’ve learned more about prematurity, I’ve come to realize that question has many answers, but one contributing factor was the surfactant his lungs received in his earliest hours. They allowed his lungs to inflate and receive the oxygen that every cell in his body needed. So, surfactant not only helps the lungs but every other precious part of a preemie’s tender body. March of Dimes researchers are credited with developing the surfactant therapy that likely made a difference in J’s outcome. Would he have lived without it? Maybe. Would he have the same quality of life? Definitely not.
Our second March for Babies walk was miraculous because we were with my friend with quads. Here we were, two healthy, young women back on our feet after two difficult years, and sprawled in front of us in strollers were five preemies, the largest of whom weighed 2 lbs. 8 oz. at birth. In fact, I added all of our babies’ weights and discovered that together they weighed just over 12 pounds. I thought all our days with tiny babies were behind us, and I delighted in our future.
Last year’s walk was difficult because my husband was on a business trip in London and was unable to participate, but it was no less significant to us. In that last year, I had gotten pregnant, had a relatively uneventful high-risk pregnancy, developed a surprise case of severe preeclampsia, had another 2.5-lb baby, and weathered another NICU stay. There I was at the same walk representing not one preemies but two tiny babies.
Somehow, it seems fitting to make this walk our last. It doesn’t mean that we won’t continue to donate to the March of Dimes, and it certainly doesn’t mean that we won’t continue to find ways to give back to our preemie community. If we meet our goals this year, we will have raised over $5000 for the March of Dimes, which is exciting for us. But, with moving and leaving so much of our NICU days behind us, it feels like it is time to say goodbye to the March for Babies walks as well.

It’s not about the money. It’s not just a walk. For us, March for Babies is intensely personal. It’s about making lemonade out of lemons. It’s about encouraging other families like ours. It’s about putting our children’s names and weights on t-shirts and declaring them as the survivors they are. It’s about recognizing the babies who weren’t as fortunate as our babies were, and it’s about calling attention to so many conditions and diseases that remain shrouded in mystery.

To put it simply, we walk for our children and for all the other children like them.

How A Vitamin Should Have Stopped My Labor

We all say things. All day long. We comment and chat. We offer up opinions and advice. We discuss. We make small talk. But, do we realize the impact of our words?

There is a person I’ve never met, and she doesn’t even know that she broke my heart.

I was a new mother to J. He was six months old, and he’d been out of the NICU for just three months. I hadn’t slept a night straight through in six months. All the stress of bringing him home had finally decimated my milk supply. I was emotionally raw. And exhausted. And so fragile.

A friend mentioned to me that her doula wondered why I’d had my baby so early, and my friend relayed that she’d told her it was a mystery. The doula wanted to know if I’d been taking my prenatal vitamins.

Still, after three years, that one comment has the ability to cut me to my core. I felt my heart sink, and in that moment, I was completely at a loss for words. I, a talker and a writer and a teacher, I had absolutely nothing to say.

I think back to the woman I was then. I just needed a big hug. Not a slap across the face.

It’s such a casual comment. I realize no malice was intended. And the comment should never have been shared with me because it was judgmental and hurtful and ignorant. Shouldn’t a doula, a woman who has had babies and who delivers them, shouldn’t she know that the human body is both miraculous and confounding? As human beings we should never be so bold as to assume we have all the answers. And because pregnancy involves two lives, it is that much more confounding.

It’s so naive, the idea that a vitamin could have stood in the way of preterm labor when all the heavy drugs they threw at me did nothing. A vitamin?!

I realize that blaming me is a defense mechanism for some women. Surely, if I somehow caused my babies to come early then what happened to me can’t happen to someone else. It is natural for us to want to assure ourselves that someone else’s nightmare can’t become our own. But, every time I see a prenatal vitamin, I think of those words, so unsympathetic, so callous, so hurtful.

And it reminds me to reign in my temper. To watch the words I use. To apologize when words come out sharper than I intended. Because sometimes the things we say stick with people and hurt them in ways we can’t imagine.

The Blood Pressure Monitor

I went to my podiatry appointment this morning. It’s the Monday after the time change, so I was a little groggy. And I felt the doctor was less chipper than usual, probably because he is also groggy. But, I left feeling completely out of sorts, and on the way home, I tried to decipher why.

It’s all for the most ridiculously mundane reason: I had my blood pressure taken, and I wasn’t prepared for it.

How silly is that?

I never even knew what good blood pressure numbers were before preeclampsia. I knew high blood pressure ran in my family but only in people older than 40. So, as a young, healthy person, I paid very little attention to it. I never even thought about it when I was pregnant with J. But, after the shock of preeclampsia with M, blood pressure cuffs give me the chills. They are revolting. The sounds they make take me right back to having my blood pressure taken every fifteen minutes. For days. Lie this way, turn that way, tip your body back, relax, don’t talk, try to rest and hope that the next reading is better. (How do you relax when you’re living by those numbers?!) Now, at a podiatry appointment a year later, someone pulls out a blood pressure cuff, and the fear absolutely floods me. I tried to make a joke about it to the nurse, but it sounded hollow. It really wasn’t funny at all.

The podiatry nurse has daughters born at 24 and 25 weeks, so during every appointment, we chat about how our preemies are doing. We talk about changes in our NICUs and what life is like with preemies and how people who haven’t lived it just have no idea. His youngest daughter recently started walking unassisted, he told me, and she’s two if I remember correctly.

I love conversations about preemies, because now it is my home. It is my world. And I rejoice in it.

But, the stupid blood pressure monitor? I wanted to fling it off of the highest building, which is pretty unfair because it’s not really its fault I have such terrible associations with it.

M helped me make peace with so much of the NICU trauma that I don’t have many triggers, and I guess until this morning I didn’t realize the power the blood pressure monitor has over me.

I talked to the nurse about his triggers. He laughed about how the coffee pot when they first brought his daughter home sounded just like the alarm on her feeding pump. Get a hammer and kill it! But, it’s only a little bit funny.

Even walking into the podiatrist’s office is difficult. It’s on the same floor as my high-risk doctor’s office. When I park the car, I think of all the visits I made here. Each week, I had progesterone shots in the hopes that M’s journey would be different. (Well, it was but not in the way we’d hoped.)

Every time I drive downtown, I am a new mother again with a sick baby in the hospital. When I go to the town where my son’s school is all my memories are of his early years and how difficult they were. When we drive to the town where my son was born all I can think about is that night in the hospital when they couldn’t stop my labor. When I drive to visit my best friend from the NICU, I think of all the trips I made when all our kids were on lockdown and we only had each other.

From the first six weeks we lived here when J was born so suddenly until this moment, everything about this place has been about preemies. I know I can’t make up my mind because one day I say I don’t know how I’ll leave this part of our lives behind because it has changed everything, and today I’m saying the ghosts of the NICU are in every closet and I can’t get away from them.

We are moving this year to a place where the memories aren’t ever-present. They will be memories, not everyday reminders. While I’m sure I never want to forget all my babies’ firsts and while I’ll always hold dear the places that have made my children’s successes possible, I can’t help but think it is time to put all the visceral reminders in the past.

We can leave the house where we brought our tiny babies home. We can leave the cities where our babies were born. We can dust off the NICU cobwebs that seem to be sticking to us, and we can start fresh in a new place.

But, I am probably deceiving myself if I think I can ever look at a blood pressure monitor the same way. At least the next time I see one, I’ll be better prepared.

From Afar

In some ways, I get tired of all the repercussions of the Internet and smart phones and people always being so distracted by technology. I guess in some ways I am a Luddite. I think we should get more fresh air. I think we should have less distractions. I think we should have boundaries that protect family time from the encroaching working world.

But, I cannot imagine having preemies without the support of other Preemie Mamas. This has been a lonely four years. The loneliest of my life. It’s the nature of having small children. It’s what happens when you have a baby who can’t go into public. Just the schlepping into and out of the hospital for five months isolates you because your heart and soul remain trapped in that NICU with the baby you leave behind everyday. It’s just so lonely.

I’ve emailed and shared Facebook messages. I’ve blogged and read blogs. I’ve texted some of my worst fears to friends I’ve never even seen in real life. And without that support, where would I be?

It gives me such great joy to share my experiences with other parents in similar circumstances. I need to feel needed. I need to feel that I’m reaching a virtual hand out to other families like mine. Sometimes, this part of my life is so dominant that I wonder how it won’t always define me. How will I leave this all behind? It seems so consuming to be something in my past to which I casually refer when someone asks me at a consignment sale what size baby clothes to buy (like I have any clue).

I run errands. I pass people I don’t know. I shuttle kids to and fro. I smile and make polite conversation, all while I carry this baggage. We all have baggage, so I don’t mean it as a complaint. This baggage is mine, and I wouldn’t trade it for someone else’s. It’s just that when I feel so disconnected in my day-to-day life in a place that has never felt like home, I find a home among people I’ve never met in real life. They have been friends to me when I’ve been in a black hole. And this is the beauty of technology, of blogging and texting and Facebooking. With everything humans touch, there is good and bad, and for me the good of technology has been forming communities with people who share my experiences. Less than 1% of women in this country have experiences that mirror mine. I would never connect with this preemie parent community without the benefit of technology.

So, this morning, after a series of Facebook messages with another Preemie Mama that both broke my heart and made it whole again, I am thankful for all the women who have supported me. From afar.

Homecoming Day!

From this barely 5-lb baby

and this little love

to this big girl in just one year!