Almost sixteen years ago, on a warm, sunny September day, at 23 weeks and 4 days pregnant, I began to bleed. I bled a lot. Two thoughts entered my mind as soon as I saw all the blood - 1) My baby is dead; and 2) I can't do this again. We'd already been through almost two years of fertility treatments, and had suffered an early miscarriage the year previous. I didn't know anything about prematurity or neonatal intensive care units. I just knew there was no way my baby could survive with that amount of blood. But half an hour later, I heard his heartbeat on the fetal monitor, and I breathed again. I didn't know what was wrong. I didn't know what was coming, but my baby was still alive, and that's all that mattered in that moment.
I spent sixteen days on hospital bedrest, a continual IV of magnesium sulfate to keep the contractions slowed. The bleeding never stopped. I had three rounds of steroid shots over those sixteen days. I lost 8 pounds in six days, and my husband was given the order to "bring whatever she will eat" and the feeding program began. I had a test on the 15th day, called an FFN (fetal fibronectin), to see if certain levels of the protein was present, indicating delivery within a short time. The doctor doing the test wasn't one I'd seen before during my stay. She commented on the amount of amniotic fluid, and asked was I sure I'd just had a placenta abruption, or had my water broken as well? I didn't know what to tell her. No one had told me that part. No one told me that FFN test was positive. It didn't matter. That night, I developed a high fever due to a staph infection, and labor began in earnest. The doctors wouldn't stop it, knowing if my baby had any chance of survival, it was better outside of me then. The next day, our son Ryley was born, at exactly 26 weeks gestation, weighing exactly 2 pounds, and was exactly 15 inches long. Considered "big" for a 26 weeker, I'd never seen a baby so small. He suffered respiratory distress, was given Apgar of 5, then 6, and then 7. I heard him give the tiniest mewling cry just before he was intubated.
Ryley spent 93 days in the NICU. He was on the ventilator a mere 36 hours, but struggled to wean off the CPAP. He suffered his own staph infection at three weeks old. He had two blood transfusions, and spent some time under the bili lights due to jaundice. He had a Grade I/II brain bleed, which resolved on its own. But he had no patent ductus arteriosus (PDA) and thus needed no PDA ligation. He did not endure retinopathy of prematurity (ROP). He had no hearing issues, no feeding issues. In the months and years following his discharge, he had some high muscle tone on one side - a potential indicator of cerebral palsy. With some physical therapy, he overcame that. He had a mild speech delay. We utilized sign language and some speech therapy, and he overcame that. When he was four, he was diagnosed with reactive airway disease, which became full-blown asthma a year later. When he was eight, we discovered he has ADHD. Neither the asthma nor the ADHD were unexpected. But once he left the NICU, he was never readmitted to the hospital. We know that 26-weekers simply do not turn out like our boy.
At 15.5 years old, he is a Freshman in high school. He ran on the high school cross country team last fall. He's currently on the Varsity golf team, and is training to run a half marathon in June. He is a perfectly normal, healthy teenage boy. So why, after all this time, and given his outcome, do we still walk in March for Babies every year? There are oh so many reasons. First, we get to honor and celebrate the miracle of his life. Seeing him there, walking with the other miracles, makes me choke up. Just the fact he can walk, see, hear is amazing enough. Second, we walk because we know how many preemies don't ever come home, don't survive. We walk in their memory. We walk for all our friends who have shared this journey. We walk because I can never say thank you enough for the role the March of Dimes played in saving our son's life.
About this time last year, my niece sent me a message. A close friend of hers had just given birth to a son at 24 weeks gestation. She wanted to know what she could do for her friend, what she should say, what she shouldn't say. My heart went out to her friend. A week later, her son passed, his prematurity too much for him to overcome. My heart just broke. We walk, and continue to fundraise, every single year, because in this day and time, with all the technology available to us., there shouldn't still be babies being born too soon, too sick, and too small. We walk because we know what it's like to spend months in the NICU, to spend years wondering what your child's outcome will be.
Team Roo has existed for eleven years. And it will continue to exist until the day the problem of prematurity is solved.
I could not love you more. You and your family are amazing.
You are amazing and are an inspiration to so many! I love ya and your kiddos!
So proud of you and Team Roo!
Much love and many hugs.
So much admiration and love for Team Roo, your family and all that you do for the mission and all you and other veterans have done for me since I have come to be a member of SYS.
Love and Hugs
Thank you, Donna. Thank you so much for caring about all the other babies out there who deserve their forty weeks inside, who deserve every chance at a healthy life.
We help moms have full-term pregnancies and healthy babies. And if something goes wrong, we offer information and comfort to families. We research the problems that threaten our babies and work on preventing them.
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