My hands are weakly wrapped around the wheel.
My throat choked up as I’m holding back the pain inside from physically manifesting down my face.
“Happier” by Marshmello & Bastille is playing on the radio.
The twins are behind me securely strapped into their car seats.
I can’t see their faces, but I’m consumed with guilt-
Imagining the seeds of resentment planted in them by a day that I ruined. Potential joy that I robbed.
It just so happens to be World Prematurity Day.
I am a preemie mama, and I’m here to share my story about post NICU trauma.
This past November 17th marked another annual reminder of the many babies born too soon through World Prematurity Day. Unrelated to this day’s cause of a call to awareness for this medical tribulation, my family was invited to participate in a local charitable event for less fortunate members of the community to receive a meal and take home food donations and commodities. As a single mother of twins, any outing we undertake has its logistical challenges. Unique to us, however, is the additional compounding factor of it currently being RSV season. Although this is my twins’ second winter, I have made the choice to continue to err on the side of caution and once again remain in semi isolation during the winter and early spring months. This means no large crowds and avoiding most indoor events and stores.
You see, although my twins appear healthy and happy on the outside, the fact is they were still born 12 weeks too soon. This means they entered the world before receiving necessary infection-fighting antibodies and have vulnerable lungs compared to their peers. At even greater risk is my son, whose water broke at 26 weeks, stunting lung development even before his birth. During his first couple of weeks in the NICU, he remained on critically ill status while fighting to overcome sepsis, respiratory distress syndrome, pulmonary hypertension, and a large PDA. And, while their known risk status makes them eligible for the monthly Synagis injection (a preventative shot against RSV) doses all winter, even the drug’s information website itself clearly states- “Children can still get severe RSV disease despite receiving SYNAGIS” (https://www.synagis.com/patients/what-is-synagis.html?fbclid=IwAR3pyRTWHfv93XFzwgaFJ5R8kh5gqi7rwdG6etEk7gNzMcs52cMo41rMo3w).
I had originally hoped that since this particular occasion was limited to invite only that it may be a small somewhat manageable gathering for us, but as I pulled into the parking lot that did not appear to be the case. To make matters worse, as I opened my driver side door, I was immediately greeted by a former NICU mama’s most dreaded sound- a hacking cough nearby. I was then directed by a parking lot greeter to the first building for registration and breakfast and my heart sunk as I saw how full and enclosed the space was. Struggling to trudge the twins’ frame stroller through the parking lot gravel, I disappointingly let go of the thought of being treated to a meal I didn’t have to prepare myself while sitting down for a minute to get a break and relax. After finally arriving at the door, I asked another event volunteer if it was possible to skip the meal and just pick up the donation box but was told I still needed to enter to register. Fear crept up my neck as I entered in and joined a long enough line to know there would be a significant wait. I tried to save myself more sorrow by keeping my eyes away from the buffet style breakfast spread that I would be missing out on.
As soon as we stopped moving and my little ones realized we had arrived at our destination, they immediately decided it was time to get out of the uncomfortable infant carriers and play. They both started whining and arching their backs to push out of the straps. On cue, both the presence of babies in general and that they’re twins drew attention from those around us. Within seconds I was surrounded by outstretched arms of strangers leaning forward into the seats and offering their assistance. Everything started to become a blur for me. All I could hear over the sound of my heart beating faster as I impatiently willed the line of people to dissipate was the phantom beeping of the cardiopulmonary monitor. Was this another desat? Did a wire just get loose again? Where is the nurse? I started singing “Twinkle Twinkle Little Star” to settle the twins, but they were adamant to get out and on the go. The women around me kept insisting on lending a hand and I could hear their frustration with my dismissal mounting – “I can take one- if you’ll let me help you”. I tried not to make eye contact to minimize my shame. “I got it,” I muttered in no particular direction.
After managing to check in with my two fussy toddlers, I finally made it back outside and to my car. I pulled around to the second building, where a man came up to my car window and asked, “how can I pray for you?” “I’m losing my mind.” He chuckled and thought I was joking. He responded by re-wording my confession- “Okay, so you don’t want to lose your mind.”
No, I’m already on my way there. Of course, I wanted the kind strangers to help. Of course, I want to enjoy the rare treat of a prepared meal. Of course, I wanted to take my children to the play area and inflatables in the other building and let them have fun. Get their energy out. Be kids. Get gawked at and ooo’d over for being twins and little and cute. Be normal.
But instead this is our reality. Having to ask if an event will be indoors. How many people will be there. Being accused of being a “germaphobe” even by friends and loved ones. Especially by friends and loved ones. Having people avoid visiting us because they’re uncertain about the ‘requirements’ to visit. Deciding it isn’t worth the fuss and leaving us abandoned instead. Feeling isolated, misunderstood, burdened. Alone.
Everyone says germs are “good for you”. That your baby needs to build an immune system before they get to school. But not everyone has seen their baby in the hospital for months. Poked and prodded daily. Prongs in their nose, wires stuck on their body, mouth covered by tape and a tube down their throat. Uncertain if they will even come home. If today is the day they will take a turn for the worse.
I exited the driver side door and approached the side door expecting the worst.
But there was no spite or resentment.
As I pulled the first door open, I was met with my son’s usual wide cheesy grin.
My daughter was peacefully asleep.
The moment had passed for my toddlers’ short attention span.
We were home. Safe. Healthy. Our whole family together. No longer separated by one twin being left at the hospital while I took the other home first. Would they for sure have gotten sick had we stayed? Maybe, maybe not. Is it worth the risk? For our family, not yet.
I am a former NICU mama. And I am still dealing with post-NICU trauma. For my family, prematurity awareness is not just one day- is it year-round.
By: Valerie Frost November 20, 2018
Valerie Frost is a mother, scholar, and lifelong learning enthusiast. A Garden State native, she is a former Kindergarten teacher now tackling Stay-at-Home Mom life with single parenting of boy/girl premature twins. She recently completed her M.Ed. and has a passion for creativity, health, and personal well-being.