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Awareness

November is Prematurity Awareness Month. Unless you have a preemie though, or are friends/family of someone who has a preemie (and whom also knows it’s Prematurity Awareness Month), you may not be aware this is your month. I  have a preemie. I know it’s Prematurity Awareness Month, and I take it as a personal responsibility to make you all aware too. Hah!

Every month on the calendar has some kind of “awareness” now attached to it. Oftentimes, there are multiple awareness campaigns going on each month. What month is yours? Do you know? If you really look, I’ll bet you can find something in almost every month that has affected your life. Just as far as I’ve looked, I get April, October and November, and that’s without investigating further. So how do awareness campaigns work, and why do we have them? I’m still figuring that out. We are slammed with so much information on a daily basis. We are approached by so many organizations asking for help, doling out data, wanting us to be aware. So you might know about prematurity, but do you know what it really means?

I had no clue what it really meant to have a micro-preemie. Like many people, I thought preemies were just tiny babies who just needed to grow. I thought preemies just got to wear those really cute, really tiny diapers and clothes. I was clueless….until I was gushing blood and admitted to the hospital just over halfway through my pregnancy. Then reality struck when numbers and odds were being thrown at us for his mere survival, when food to help me and my baby was pushed at me every other hour for sixteen days, when I was given steroid shots six times to help my baby’s lungs develop early, when someone asked me on the day of my son’s birth if I wanted them to attempt resuscitation, when I watched my child fight for his very life, when we spent years in follow-up care, not knowing what his outcome would be, when every cough/cold/flu brought pneumonia, when even now I worry what shoes wait out there to drop even fourteen years later. Preemies are sick babies who need machines, medicines, and 24/7 care to stay alive. Parents of preemies wonder if they even truly are parents until their babies come home, if they come home. Parents of preemies don’t get to hold, change, or feed their babies like normal parents of newborns. Parents of preemies must wait until their baby is stable enough to be held. They must ask permission to even touch their baby. Parents of preemies learn what each beep, alarm, and tone of each machine attached to their child means, and even years later will react when they  hear those sounds. Parents of preemies learn how to properly wash their hands, and will continue to reach for the floor pedal to turn the water on even months/years after leaving the NICU. Parents of preemies worry at the gain of loss of parts of ounces. Parents of preemies want to show their pictures of their precious child, but are terrified of peoples’ reactions. Parents of preemies best friends are their NICU nurses. Parents of preemies struggle to find someone, anyone, who will just get it. Parents of preemies will tear up at even the most mundane of their child’s activities, because there was a time they didn’t  know if their child would live much less be able to do something so normal, like walk, run, talk, eat, see, hear, breath on his own, play t-ball or soccer or golf. Parents of  preemies too often watch another parent of a preemie make the brutal decision to take their child off life support and say goodbye. Parents of preemies know it can all boil down to a roll of the dice whether their child survives.

One in eight set of parents knows what it is to be the parents of a preemie. ONE IN EIGHT!!! What exactly is premature birth? It is, by definition, birth before 37 weeks gestation. Early preterm birth is before thirty-two weeks gestation. Very early preterm birth is that before 26 weeks gestation. While the rates of survival of micro-preemies is continually improving, the long-term results of such births is still being researched. When I was admitted, we were told our 23 weeks 4 days baby had a less than 10% chance of survival, and zero chance he would survive without lifelong medical and developmental problems. When he was born at 26 weeks, he had an 80% chance of survival, less than 50% odds of surviving without lifelong medical and developmental problems.

This is what it means to have a preemie.

It’s November. It’s Prematurity Awareness Month. November 17th is World Prematurity Day. We will spend this month honoring our preemie, celebrating his life and the life of other survivors, and remembering those preemies whose lives ended too soon, their tiny bodies unable to overcome their too early beginnings. teamrooback2-whitebackground

Big Man on his birth day

Big Man on his birth day

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