Why I Walk Wednesday
This is my “Why I Walk” story:
My husband and I have always been strong advocates of making philanthropic donations a big part of our lives, with financial donations when we’re able, or with our donations of time/services when we’re facing financial hardship. I’m so glad that we both agree that this is an essential part of being a human being, and we want to teach the twins this as well.
My husband’s mother died of ovarian cancer before we even started dating. I never met her. But every year, we walk in the NOCC (National Ovarian Cancer Coalition)’s Walk for the Whisper in Philadelphia.
This past year, the munchkins came walked (or rather strolled) with us.
We also walk every year in the Philadelphia Race for the Cure, because my grandmother is a breast cancer survivor. This is a picture of a very pregnant me, about a month before the babies were born, at the Race for the Cure in Philly.
I am, however, growing increasingly jaded with Komen, to be honest. They’ve grown to the point of corporation, and I feel like they’ve really been drawn from their mission because they’ve sold their mission to the highest bidder. They focus on cure, rather than prevention. They’re endorsed by companies that sell food items that have known carcinogens as their ingredients. They sell pink ribbons that are made with toxic carcinogenic dyes made by slave labor in Chinese factories. It’s all very hypocritical to me. So I’m on the fence about the walk this May. (NB: If you’re interested in learning more about the “pink industry,” I highly suggest you take a look at this rather remarkably insightful documentary: Pink Ribbons, Inc.)
But I digress. I’m adding a new charity to my list, and this is an important one. The March of Dimes.
The twins were 32 week preemies, and the truth is that we don’t really know why. I was seen by my OB every week, and a perinatologist 2x/week. My cervix was strong. I ate healthy foods. I slept as well as I could. I took excellent care of myself. My babies were growing well. But still, I unexpectedly went into premature labor that couldn’t be reversed or even slowed down, so they arrived 8 weeks early. My daughter weighed just 3lb 15 oz. My son weighed 4lb 3oz. They were delivered via emergency c-section. And I’m a bit of a “granola mama.” I was going to go au naturale. But there I was, splayed out on a table, numb from the waist down, being cut into and having my sweet tiny babies ripped out of my womb, tiny and blue and flailing. They didn’t even have time to show them to me before they were whisked away to the NICU. My husband was torn between staying with me and going with them, but for me it was a no-brainer. He looked at me with that question, and I nearly yelled at him. “GO!!! GO WITH THE BABIES!!! NOW!!”
Once the epidural wore off, they were able to wheel my stretcher into the NICU so that I could at least see them. I couldn’t hold them yet, or even touch their tiny hands, but I could see them. Wires everywhere. Tiny. Terrifying.
My birth experience was NOT what I had expected or planned. I had imagined two perfect 6 pound babies being placed on my chest right after a natural birth, breastfeeding right away, falling asleep on my chest. My new family. Needless to say, the reality of my birth experience was traumatizing, violent, and terrifying.
The nurses tried to get me to stay in bed that day. I wouldn’t have it. Within hours of my c-section, I was refusing pain meds, and I was toddling down the hallway, two nervous nurses tailing behind me, to the other side of the hospital so that I could watch my babies. I wasn’t able to hold them for DAYS. And going home without my babies was the most traumatizing thing that I’ve ever experienced in my life. It was a physical pain like nothing I’ve ever felt, leaving my babies in that hospital. It still feels absolutely raw when I try to remember it.
But I was slowly becoming inaugurated into a new club: NICU Mommies. I learned the ropes. I learned how to wash my hands like a surgeon so that I could reach my hands through the holes in the isolette and hold their tiny hands. I learned how to pump breast milk, label it, and check it into the NICU so that they could feed it to them (babies that little don’t take a bottle, but rather they have a tube that goes down through their nose into their stomach.) I learned what all the numbers on the monitors meant, how to avoid sheer panic when they had a Brady or an apnea episode, and not to absolutely break down when the alarms went off. And oh, those alarms went off. I learned to smile through my tears.
And those NICU nurses. Oh those NICU nurses. They walked me through it all. They held my hands. They celebrated with me on good days, and they allowed me to cry when I needed to. They helped me to not be so afraid of my tiny babies, so afraid that I was going to hurt them, or they’d just fade from me right in front of my eyes. And my babies were HEALTHY preemies. Just “feeders and growers,” meaning that they were otherwise very healthy babies, but they just arrived too soon, so the NICU was just feeding them and growing them, doing the work that my body couldn’t complete. They showed me how to do sponge baths in the isolette. They showed me the beauty of skin-to-skin contact with Kangaroo Care, where in I would sit with one naked baby, then another, curled up under a blanket on my bare chest for hours and hours each day. They made my NICU journey tolerable. And in turn, I passed along the favor. I traded recipes for lactation cookies with other NICU mommies. I smiled sympathetically with newcomers, recognizing that terrified look on their faces. And when they asked me, “How do you do it? How are you smiling?” I’d reply, “It never gets easy, but you get through it. I promise you. You get through it.” And they did. Right alongside me.
I learned to celebrate tiny things: their ability to maintain their own body temperatures so they could be in a regular nursery bed instead of an isolette, the day they no longer needed to be under their jaundice treatment lights, their ability to breath/suck/swallow without having a Brady, a day without an apnea episode, or an 8 hour period with a Brady. I learned to check their A/B chart every day. I spent 14-16 hours in the NICU every single day. The nurses at times told me that I needed to go home, to rest, that they’d be coming home before I knew it, and I’d be grateful for the extra sleep. But I smiled and they knew I wasn’t going anywhere. I celebrated as our babies graduated from the Critical Care NICU to the Intermediate Care NICU (literally, the other side of the room).
But even as there’s a community of NICU parents, it’s still the loneliest I’ve ever felt in my life, to be honest. I wanted to celebrate and dance for joy at the birth of my babies, but they weren’t really with me. I had to travel 20 miles to see them each day, spend all day in the hospital surrounded by other parents whose journey was their own. Even as we all smiled and knew one another, it was still so lonely. People were awkward (understandably) around us. On the one hand, YAY BABIES! On the other hand, TINY BABIES!
We watched as some babies were discharged before ours, and it would rip open our wounds of wanting our wee ones at home with us. We’d come in to the NICU to see that somebody had dropped off their car seat for the big test (all NICU babies have to pass a car seat test before they can be dischared, in which they must sit, strapped in their car seat, for 90 minutes without an A or a B – Apnea or Brady). We’d smile, and ask how close our babies were to that test. Nurses were always careful to never give a date, and remind us that each baby has their own timeline. Nobody really came by to see us because of the situation.
I felt guilty. I kept killing myself with guilt over what I could have done differently. What was wrong with my body that caused them to come early. In the end, we just don’t know. I was healthy. The babies were healthy.
My son was slow at first to give up his oxygen, but he took to the bottle and the breast right away. He spent 5 weeks in the NICU. His sister was supposed to come home just a few days later, but she continued to have significant problems centered around eating. It became normalized to me, to be feeding her, watch her begin to turn blue because she’d stopped breathing when she was taking a bottle, and I’d gently lift her up, pat her back, call her name, remind her to “breathe breathe please breathe, my love.” Her monitor would stop beeping, her color would pink up, and she’d open her little blue eyes and be ready to try again. God, these kids are so strong. So miraculous. I’m crying now as I remember this. Their absolute strength as they tackled challenge after challenge with strength and dignity. It took my daughter an extra 2 weeks to be discharged from the NICU, so she spent a total of 7 weeks there. They both came home on apnea monitors (that measured they heart rates and breathing 24/7, which was simultaneously a huge pain and a massive comfort), and remained on those monitors for several months after they came home.
So I support the March of Dimes. Because they supported me while I was a NICU mommy (and I hesitate to use the past tense there, because I’ll ALWAYS be a NICU mommy.) On April 27th, the March of Dimes has their annual fundraising walk, and I’m organizing a family team. We’ll walk to celebrate our own healthy, growing preemies, to support an organization that tries to help us understand why healthy pregnancies like my own still sometimes just…end early. We also walk to support other families who weren’t as lucky as we were, for those babies who are born prematurely, but who have other issues — who aren’t just “feeders and growers.” My heart breaks for them. We walk for the NICU staff, the doctors who are amazing, of course, but the nurses, who do the hard work of holding the hands of overbearing, frightened parents who are confused and sad and happy and joyous all at the same time.
So if you’re interested in joining our family team, walking with us, and raising money for this WONDERFUL organization, please consider doing so. Here is our Team page. Feel free to join our team and walk/fundraise with us.
Here’s my own personal fundraising page. If you can’t walk, please consider a small donation to our efforts. Just skipping one or two Starbucks coffee treats this week, or packing your lunch and donating that money that you would have spent to the March of Dimes, could make a world of difference.