November 17 is recognized as World Prematurity Day. Buildings, monuments, and well-known landmarks planet-wide will be lit up in purple, showing solidarity in the effort to bring awareness to and prevent future premature births.
One in ten babies is born too soon. We had two daughters with this fate. Sophia, born on December 31, 2010 at 20 week’s gestation, did not survive physically, but that does not stop our hearts from loving her daily. Her ability to change our lives, our perspective on importance, and intensify our deep compassion for others will forever impact who we are.
Our Rainbow baby Evelyn, born at 31 weeks 4 days, is now a happy addition to our family. We spent five weeks in the NICU watching her grow, develop stronger lungs, and find her ability to bottle feed. Her body, at 3lbs 2oz, could not regulate its own temperature until nearly the end of our hospital stay. As we sat with her each day, we witnessed so many other families who were in the same position as us–and so many who had it much worse. When a virus spread through the NICU, one baby did not survive. We overheard through a curtain when our roommates had to break the news to the family that their daughter, Journey, would not survive her devastating diagnosis of Trisomy 18. Some babies had warning signs outside their cribs, alerting visitors and medical staff of their fragility and the need for those who approached to wear protective clothing. As we watched our daughter meet her goals, we too were plagued by birth anomalies and the need for extra support through physical and occupations therapy.
The journey of having a preemie is never-ending, yet it is likely far more rewarding than any other. There are always setbacks; so many of us are excited to learn of our child’s impending hospital discharge, only to return the next morning and find it was delayed–again. One episode of apnea, a failure to pass a ‘car seat test’, or a drop in body temperature was equivalent to pushing a reset button.
These preemies are born tough and they stay tough. Evelyn remains a fighter and strong-willed in all the things she does.
There is not a day that passes in which I do not feel profound gratitude for what we have with our daughter. We were the lucky ones. Not every parent goes home with their preemie and not every preemie is as healthy as ours. While her physical delays persist, those are workable, and she progresses each day. She avoided brain bleeds, hydrocephalus, illness, and a host of other ailments many babies born premature face.
So, if on your drive home from work, or while you are grocery shopping, or just watching the evening news you happen to notice purple, take a moment to send positive wishes to all those whose babies are born early.