I have held two of my four babies. Both of them were born prematurely. Both had impossibly tiny bodies that fit in the palm of one of my adult-sized hands. Both joined the world far too early. One survived. One did not. While we are still trying to unearth reasons for my three pregnancy losses–including Sophia’s anomalies which eventually lead to her demise–we know that our two live births were premature due to uterine structure abnormalities.
While Sophia was technically born prematurely, we knew her fate before her birth. We were grateful nature had its own agenda, relieving us from the unimaginable task of having to end the pregnancy early. We held our tiny Sophia until she took her last shallow breath. Weighing less than a pound, her perseverance and unfathomable strength gave us an hour-and-a-half of precious life.
Five years later, we fumbled our way through our fourth pregnancy with Evelyn. From the beginning, we were scrutinized beyond any way I could have imagined. Having weekly appointments, sometimes multiple with various doctors, we had more ultrasounds than I cared to count. Early on, we were watched for signs of preterm labor. It was one of the only concerns the high-risk doctors had that ultimately affected us deeply. Despite having a septated uterus, having this baby early was the least of my worries. Far from the disasterous mixture of genetic conditions and miscarriage that took our first baby, my worries of a misshaped womb for our new little one was pushed to the far corners of my thoughts; time and again doctors had assured me it was not the issue causing our recurrent pregnancy loss. Septations do carry a risk of preterm babies, but as I was checked frequently for signs of labor (most recently two days before going into labor), I was once again reassured this would not be our biggest problem with this baby. It soon became very clear, however, that it would be the most immense fight of tiny Evelyn’s precious life.
The night Evelyn was born was wildly unexpected, and profoundly frightening. Unable to turn off the mantra this shouldn’t be happening; it’s too early, the terrifying words infiltrated my sleepy thoughts as we made our way to the hospital at 2am. Our choices were dire: try to prolong the pregnancy with drugs or have a c-section immediately. Despite our panicked questions, no doctor or nurse could (or would) guide us to the best choice. Either way, Evelyn would be born early. Like with Sophia, the impossible decision brought us to the pinnacle of distress before nature took over and plucked the choice from our hands. Labor had progressed too far to stop. At 31 weeks 4 days, Evelyn was coming that night.
Even from behind the sheet in the operating room, my heart filled with love the moment I heard her tiny cry. Breathing, screaming, and adjusting to her new world, Evelyn’s fortitude was evident the minute she was born. Tiny and mighty, she was ready to take on the world and astonish her doctors.
Thirty-nine days in the NICU showed us what it means to fight for one’s life. We watched Evelyn fight for her breath, her food, her weight gain, her strength. Struggling through preemie-induced apnea, many times our hearts stopped as her monitors sounded in alarm. Watching her oxygen drop over and over again, we never grew accustomed to our baby stopping her breath. We learned from our patient nurses how to change a diaper on a 3lb baby even when we were scared of breaking her. They showed us how to hold her despite her feeding tube and numerous other wires attached to her torso. They showed us patience as we fought to teach Evelyn how to drink from a bottle, even when it took her longer than the 30 minute time limit to finish less than an ounce of milk. Through the challenges, setbacks, progress, and lonely nights without her mommy and daddy by her side, she never succumbed to giving up.
While Evelyn has continued therapies for issues unrelated to her prematurity, we are thankful daily for her giggles, her silly games, her curiosity, and her life. Without the NICU, Evelyn’s early arrival surely would have facilitated her demise. To have a healthy, thriving, and smiley baby shows us once again how to extend our thankfulness for what we have in our lives.
Our story is sadly not as uncommon as I previously thought. While in the NICU, there were many babies in there fighting alongside Evelyn. We went through several room changes, and numerous roommates. One had Trisomy 18, a chromosomal abnormality that is not compatible with life. While that baby’s family gathered by her bedside, Jason and I shed a tear for her from the other side of the curtain wall.
At one point during our stay, several babies contracted a virus. Sitting quietly by Evelyn’s bedside, I overheard a nurse talking about how one baby did not survive the illness. My heart shattered with her words. That family had to let go of their hopefulness. They had to let go of their baby. Watching Evelyn sleep soundly in her protective box, I silently thanked the Universe for safeguarding our little one.
For every grief-filled story was one of joy. For every baby who did not make it, who had brain bleeds, or a multitude of other ailments, there was a baby who thrived. Though our journey was tough, we were fortunate to have avoided many complications. Evelyn passed all tests: eye test, hearing test, car seat test. She just needed a bit more time to grow.
Prematurity is a world unknown to those who have had the good fortune to not have dealt with it. November 17th, is World Prematurity Day. It is a chance to show support and help work toward a world void of babies born too early. I challenge those who have their own stories to share. For those who are thankfully removed from this heart wrenching fate, I challenge you to read, listen, and recognize the tiny miracles (and sadly tiny losses) that occur around you everyday.