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Challenge: NICU Parenting

Buoys, Babies, and a Bittersweet Day

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When I was growing up, my family spent a lot of time boating. Every weekend, my parents would load the six of us into the boat and set out to the Gulf so that we could play on the deserted barrier islands. We’d push away from the dock and make our way out of the Back Bay, guided by the buoys that marked the route of the deeper channel. Many times, when we got out of the channel, I’d look back and see the little buoys dotting the path we took. As you were passing them, you really didn’t notice that they created a clear route for you, marking the way. But when you paused to look back, you could see the path so clearly, like a highway on the water.

Like watching those buoys, sometimes you go through major life events that you don't fully process right away; you need a little time and distance before you can see the mark they've left on your life.

That is exactly what happened last weekend when my family and I walked in the March of Dimes walk for babies.

When our babies were in the NICU, the March of Dimes did lots of little things to make families’ time in the NICU a little more pleasant. They left coloring books and crayons for siblings in the lounge, and they generally made things a little more like home. Those little things—bottled water you could take with you, a quick hello and how’s it going—go a long way when you’re trekking back and forth to the NICU every day to see your babies. So, when I found out about the March of Dimes walk, we happily signed up to march for the babies and raise money for March of Dimes. I felt like we had personally benefited from their services, and I was looking forward to celebrating our three healthy girls. We also wanted to celebrate my niece, Elise, who passed away in December after being born very premature. As a fortuitous coincidence, or maybe a God wink, the walk fell on my sister’s due date with Elise, April 30. My sisters and I knew it would be a bittersweet way to celebrate her life.

On the day of the walk, we got to the event early and unloaded the babies on the big grassy field. I looked around and saw teams of families in different colored shirts. Their shirts said things like “believe in miracles,” “preemie strong,” and “miracles do happen.” It was almost like different sections of the rainbow all huddled together in various spots around the field. Each team seemed happy to be there and ready to celebrate their babies.

Then I saw a mom pulling a wagon with her daughters, and the back of the wagon had a large photo of her intubated preemie on the back. I looked at it and felt something twist in my chest. It was both so familiar and so foreign to me now that I have three healthy, crazy-busy toddlers. But deep down I knew that my babies once looked just like that. I was staring at it and trying to reconcile in my mind how my three rowdy toddlers ever looked like that baby. It brought me right back to the time when my toddlers were preemie babies trying to figure out how to eat and breathe. I was surprised that I felt so emotional about it.

I will not cry, I said to myself.

I looked around again and saw a few special needs kids. Though I don’t know the cause of their disabilities, I think that they were likely a result of prematurity, since the March of Dimes’ mission is (in large part) to reduce premature birth.

I found myself jolted to back to my days on bedrest with the triplets, where I lay on the couch—never sitting and always laying down—and hoped to make it to the next day and next week and then finally my big goal of 28 weeks. I thought back to my doctor’s appointment at 23.5 weeks gestation, when I hovered on the cusp of viability. I thought about my doctor’s words when he said, “so things have changed, but all hope is not lost. I still think everything can be fine.” I thought about how focused I was on my mission to lie down and be still. If being still could keep the babies baking, I would do it. I would be the stillest person they’d ever seen. I would do whatever it took. But I also knew deep down that I could only do so much. Which was terrifying. Because it wasn’t up to me, what would happen to our babies. We just had to wait and take each day as it came.

I thought about those other parents, who wished and hoped the same things, and got different endings to their stories. I knew that nothing but luck separated me from those other parents.

I thought about my sister, who had a different ending. An unimaginably sad ending. I thought about all those parents who were consumed with worry and fear about having a premature baby and whose stories did not have happy endings. And whose endings did not include healthy babies. I knew the only thing separating us was luck. And nothing else.

I will keep it together.

Someone encouraged us to visit a video booth set up for recording testimonials for the March of Dimes. I was preoccupied sorting through all those big feelings, but I nevertheless scooped up two babies and headed to the booth. Seth trailed me with another baby. I could feel the tears building up inside, ready to spring from my eyes at any second.

I will not cry right now. I will hang on. I can do this. This will be easy.

The videographer started asking questions. Why did we think it was important to support the March of Dimes?

I felt myself looking back, like I did in the boat. With time and distance, I felt myself appreciating the full spectrum of emotions that came with my experience of having a high risk pregnancy and preemie babies. Thinking about how easily we could’ve had a different outcome. Thinking about how grateful we were to have our three girls. Thinking about my sister. Thinking about Elise.

And just like a buoy that was somehow buried deep under the water, it was suddenly untangled and racing to the surface. I could feel it coming closer, speeding towards the top of the water as I exploded into tears. Big, ugly tears. I could not stop crying. I could not talk. I was standing there on camera, not talking—just crying and holding two babies. I could feel Seth turn and stare at me for a second, realizing what was happening. I must’ve looked a little comical. Or hysterical? Or both? I could tell that the young videographer was caught off guard and thinking, do I keep going? Seth picked up the slack and started answering: our babies were born at 30 weeks and spent a month in the NICU. Two of our babies received surfactant, which was developed by the March of Dimes. We appreciated everything they did for us in the NICU. I squeaked out something about appreciating the small things that the March of Dimes did, and something about bottled water. We finished our interview, and the professional photographer came over and wiped tears off my face because I couldn’t do it while holding two babies.

I thanked her and felt words tumbling out: we are just so thankful. This—having three healthy, thriving, crazy toddlers—is all we ever hoped for. I wished for this and the craziness of three busy toddlers because that meant our babies were okay. But I know so many others’ babies did not make it, including my sister’s own baby, who was due today. We are so happy and sad. And, oh, yes, thank you so much for wiping my tears. It is such a bittersweet day for my family.

Like a buoy bobbing on the water, all those big feelings were completely on the surface: knowing how close we came to having a different outcome; feeling like we had "made it;" grieving the losses of those whose babies did not, including my own sister’s. Of course those feelings were there all along, but sometimes it takes time and distance to see more clearly how things like this shape your life and guide your path. In that way, they’re so much like the buoys, and I’m happy now that I can look back and see that they are just one part of the journey in creating our family. My hope is that one day, my sister will also be able to say the same.

So yes, it was a great day indeed. To celebrate our babies. To remember my niece. I can’t think of anything more bittersweet.

To my sister, I love you. You are the strongest person I know.


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