Today is Prematurity Awareness Day. 1 in 8 babies is born too soon each year. That’s over half a million babies. Our family alone has been hit twice by this epidemic…..one with a beautiful, blessed outcome, and one that ended in a beautiful little girl earning her angel wings. Ten years ago, I had no idea what prematurity really meant. Of course I’d seen preemie clothes, preemie diapers, and had heard some stories of “shoebox babies”, but I was clueless as to the reality of prematurity. In my innocent, naive mind you got pregnant and nine months later, you had a healthy baby. Nothing had ever told me that once you survived the first trimester, you still had to stress and worry. I’ve talked and talked about Ryley’s early arrival and how it changed our lives. That he is alive and thriving today we owe in large part to the March of Dimes. This foundation that stamped out polio is fighting the battle – and indeed it is a battle – against prematurity. They are funding research to find the causes and hopefully preventions for premature birth, as well as research on how to help these too-tiny babies survive and thrive just as Ryley has.
The first time I heard the song “Permanent” by David Cook, I just stopped….and silent tears flowed down my face. We had so much going on in our family at the time…my sister Deb was losing her battle with cancer, and the year had already been full of drama and trauma. But it also took me back to the beginning of Ryley’s life. The emotions of that time can flood back with the least provocation. Being the mother of a preemie is not like being the mother of a full-term baby. First of all, you don’t often get to hear your baby cry at birth. There was dead silence in the room right after Ryley was born. I heard the teeniest of mewling cries just before they intubated him. Your newborn is not placed on your belly after birth…doctors and nurses are working on him to get him to breath. Your child is not put in your arms after he’s cleaned up…he’s whisked out of the room to be prepped for transport to the place that will be his home for the next 93 days. You are not in any way prepared to see your child splayed completely naked on a warming table, tubes and wires attached to every part of him. I was in no way prepared to see my newborn, too small son for five minutes before he was taken away to another hospital. I was in no way prepared to go five days without seeing my tiny boy at all, except for on a 2×2 inch video camera screen. You don’t get to take your micro-preemie home with you when you are discharged. I walked out of the hospital empty-handed. I would walk out of the hospital empty-handed for three months.
What got to me about the song is that every day for three months, I sat next to Ryley’s bed in the NICU. I couldn’t take the torture away for him. I couldn’t even comfort him much of the time. Who knew that a mother’s touch would be considered overwhelming stimulation for her own child? There were more days than I can count where I couldn’t even touch much less hold Ryley. There were too many days when I was only *allowed* to hold him for a few minutes. You don’t get to do all the “normal” things a new mother would do…I had to ask permission to touch, hold, feed, bath, change, clothe, sing and read to my baby. So powerless to do more, I stayed by his bed every day, watching and praying. I left my son every night to the care of machines, doctors and nurses. I’d go home and sit by his crib in his room and just cry. My newborn was not home with us. We did not feel like a family. It breaks my heart to even think about the times he might have cried during the night and gone unnoticed because the nurses were busy with other babies. One of my biggest prayers now is that he will never, ever, even sub-consciously, remember or have emotional repercussions from all he went through in the NICU. I remember more than enough for both of us.
Our family will keep fighting for preemies. It’s just one small way we can say thank you to the March of Dimes, and reach out to others who are where we’ve been.