Why do we do what we do?

Our oldest, Roo, was born early.....ridiculously early. In fact, when I first started bleeding (at 23 weeks and 4 days gestation), he was given a less than 10 percent chance of survival, and a zero percent chance of survival without lifelong medical and/or developmental issues. We managed, through strict hospital bedrest and a continuous IV of magnesium sulfate, to hold off delivery for 16 very long, very boring, very stressful, very hot days. But then the IV line that gave me the medicine to stop the contractions gave me a staph infection that could have taken my life as well as that of our son. At exactly 26 weeks gestation (14 weeks premature), Roo was born, safer in a NICU than in my body.

Eight years later, I know how this story ends. Roo spent 93 days in the NICU. And it was awful, but then again, we had it relatively easy with him. He spent just 36 hours on a ventilator (whereas most 26 weekers can spend weeks and even months on a vent), which is almost unheard of. He developed a staph infection of his own, from which he recovered in just a few days. He had a minor brain bleed, which resolved in just two weeks. He struggled to lose the supplemental oxygen. But other than that, he was essentially a very tiny "feeder/grower". He did not have any retinopathy of prematurity. He did not have any hearing loss. He did not have a heart valve that would not close on its own and require surgery. He did not need to have any digestive tract infections or blow any holes in his intestines. He had no surgeries whatsoever. After 93 long days of traveling back and forth, 45 minutes each direction, to "visit" my own son....after 93 days of being a "part -time parent"....after 93 days of watching monitors tell me my son was okay, we brought him home.

I'll never, ever forget a single moment of that day. We had waited so long for it. Before prematurity struck our lives, infertility was a real issue we had to deal with. It had been a long journey just to get pregnant. And then it became a battle to get our son into this world and keep him in it. The day we brought him home, my dreams of being a mother were finally and truly realized.

It was Christmas Day, 2000. I could hardly sleep the night before, but my sleeplessness had nothing to do with Santa Claus coming or what gifts might be under the tree or whether my house was clean enough for visiting family. The moment we had waited so long for had finally arrived. But with the true joy came absolute fear. We drove to the hospital, waited for all the last tests to be completed, changed and dressed our son, unhooked the last monitors, said goodbye to the nurses who had become like family to us, and walked out the NICU doors to our waiting car. I could hardly believe it. I was terrified that at the last moment something was going to happen to keep us from bringing him home. But nothing did. And we made the trip home to waiting family. Our family was finally under one roof. I was still terrified, but I cherished every second of finally being a full-time mom to my son, without doctors, nurses, and machines watching over me.

But back to the title of this post. Why do we do what we do? What is it that we do, you say? We volunteer with the March of Dimes. Yes, we fundraise for this wonderful organization, but more importantly (in my mind anyways), we reach out to other families who are, or have been, where we were nearly eight years ago. Prematurity rips your life and dreams apart. It is isolating. It is terrifying. It is lonely. Even eight years later there is not a day that goes by that I don't look at my son and wonder what might have been. Would he look the same....be bigger or taller...if he had not been born so early. Would he behave in the same manner if he had not arrived too soon? To be able to reach out to other moms and talk about that, to be able to give hope and comfort is truly a privilege and an honor, as well as a healing effort for me personally.

Today, I read that one of the babies I've been reading about the past few months went home from the NICU. I cried. And I cried because a) I know that feeling of absolute joy compounded with absolute fear and b) his twin brother did not survive. Reading about their day of homecoming reminded me of our homecoming and how I felt that wondrous day. We do what we do so that hopefully one day no parent will have to go through this particular journey. We do what we do so that hopefully our story will give hope to another family. We do what we do because it heals us. We do what we do because the March of Dimes gives us the opportunity and the outlet to do so.