Not-Jane

Having preemies affords some unique life experiences.

Like being friends with quadruplets.

I met my friend Not-Jane* in our Parents’ Reaching Out meetings at the NICU. After J’s birth, I was in desperate need of a support group. I was lost in the unknown, and the group of women I met in those meetings were the first people to validate my feelings. I am still in touch with a few of them.

I saw Not-Jane at the first meeting I attended. She was slim, and I had absolutely no clue she had multiples until she introduced herself. It turned out that J was only two days older than her four babies and that he was about a week more premature. I liked Not-Jane almost from the beginning, and I was curious about her experience of having four babies. After six weeks of passing each other in the NICU corridors, we became friends.

Not-Jane was a bright spot during long days, and I looked forward to daily check-ins with her. I remember huddling next to J’s bassinet, lost in frustrating thoughts, and seeing her walk through the doorway. We shared information and a little NICU gossip, and some of my clouds began to lift. Her friendship provided a sense of normalcy in a situation so outside the norm.

After J was discharged, I visited her at the Ronald McDonald house until the last of her babies was transferred to the NICU in her hometown. Then, I drove an hour and a half from my house to hers about once a month. It was RSV season, so we didn’t take our babies into public, for anything. Visiting her was respite from a very lonely winter.

I’ll never forget watching her juggle those babies. She lined up Boppies and marked bottles and organized a system to meet her babies’ needs. J was a very difficult baby during his first year, but seeing her conquer chaos was a reminder to me that my problems were temporary and could be overcome.

We celebrated surviving that winter with our first March of Dimes walk in April. We did it with other families we’d known in the NICU, and I was the only mother there who didn’t have multiples. With us were a set of twins, triplets, and quads. I was amused at all the double-takes and questions, because I could watch from the sidelines. No one noticed my singleton.

Every public outing for Not-Jane came at a price. People asked the most intrusive questions, like whether she had used fertility treatments to get pregnant. (When did that become an acceptable question for strangers to ask other strangers?) During our trips to the zoo, streams of people would stop us and ask if her babies were quads, and most of the comments were repetitive: “I don’t know how you do it!” and “I couldn’t have four babies!” and “They’re ALL yours?” Not-Jane had apparently heard the same things over and over at restaurants and grocery stores and everywhere in between because she appeared unfazed, but one time she leaned toward me and said, “What is my choice? I’m not going to stop going places because I have four babies.” I always admired that attitude, that her kids shouldn’t be punished because they were multiples, and as a result, her kids were excellent in public, even with people staring at them.

My favorite comment was when J was still a baby, and all five of our babies were lined in a row. Someone said, “You have FIVE BABIES!” Not-Jane replied, “Yes, we have quints,” and we laughed. We often met for lunch in the city. One time we streamed into a restaurant with our toddlers, who still looked like babies, and we occupied every high chair the place owned. I looked around the table at all those kids in all those high chairs, and I heard Jane’s voice saying, “We are the lucky ones.” I wanted to proclaim to the rest of the diners in the restaurant our success story, all the statistics these children had beaten.

And then I added M to our preemie brood, and Not-Jane mourned the fact that I’d missed out on another full-term pregnancy. I didn’t have to explain it. I knew she understood. She was one of the first people I told that I didn’t feel like I was done having kids, even though I’m done having babies. I knew she would understand that too.

Over the last year, circumstances have made our get-togethers more rare, and now I have moved five hours away. But, Not-Jane held my babies before most of their families did. She was one of three people I texted that I was being hospitalized with preeclampsia with M. I remember her kids as they were in the NICU, what each one of them looked like, and I can tell you most of the challenges her kids have overcome.

Some people sweep into your life at just the right moment. They laugh with you, worry with you, and cry with you. And no matter where they go in life, you feel a connection. With so many little people to consider, we seldom see each other, and when we are together, our conversations are punctuated with the chatter of six other voices. But, I am always glad to see Not-Jane, and I can hardly remember all my NICU firsts without thinking of her.

*Clearly, Not-Jane is not her real name. I’d like to protect her privacy, since she doesn’t go blogging all over the Internet like me. One of my favorite bloggers Beth Woolsey gives¬†pseudonyms in this form, and it always makes me smile.

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.