Prematurity Awareness Day

Today, November 17, is prematurity awareness day. Ryan was born at 32w6d (32 weeks and 6 days) due to bleeding from a placenta previa. He weighed a hefty 4lbs, 14oz. I had received 2 rounds of steroids to help his lung development, however, not in enough time to be fully effective. He received a dose of surfactant within hours of birth. He spent a day on the CPAP and a few days on the nasal cannula. He was under the bililights for a short time and struggled with apnea and bradycardia episodes. After 26 days, he was released from the NICU. He received a shot of Synagis to help prevent RSV for each month until May. We had countless weight checks to monitor growth. We have been evaluated twice by the hospital for developmental delays in occupational therapy, speech therapy, and physical therapy.

There are 2 sides to his story – the side I’ve shared before where I remained positive and strong. And then there’s this side – the ugly, vulnerable, scary side. The side where I feel guilty for not protecting my baby boy. The side where we were forced to consider our child’s mortality just moments after his birth. The side where we held our child as his heart rate slowed and his breathing stopped.

I remember when my nephew Dylan cried for the first time. It’s the most amazing thing. At first there’s no one. Just a couple of adults and a few doctors. The next moment there is this beautiful new person. A person that you love for no reason other than because they are family. Not because of who they are or what their beliefs are or the fact that they make you laugh, but because they are yours. I remember Ryan’s first cry. It was glorious. It was MY baby crying. I was his mommy. At that point, everything became completely worth it. Not too many people experience the worst and best moment of their lives within hours of each other.

I didn’t realize at that point how much of the birth experience I would miss out on.
I didn’t get so big that I was uncomfortable.
I didn’t get to go into labor (at least not “real” labor).
I didn’t get to tell Michael it was time.
I didn’t get to send Michael to the waiting room to tell our eagerly waiting families that the newest McFarlane was here.
I didn’t have anyone waiting all day to hear the announcement of our new arrival.
I didn’t have a doctor announce happily that it was a boy. In fact, the doctor didn’t even mention that he had been born until I asked her directly.
I didn’t get to try to breastfeed until a few days later.
I didn’t get to hold my son until over 24 hours later. I was so excited to hold him and then they sent me back to the room because they had just settled him down. I would have given anything to help settle him down.
I don’t have any pictures of the new family; I took our first picture using the timer on the camera the next day.
And, perhaps the worst, I left the hospital without my baby. I left without my tiny bundle in his giant car seat. I walked out next to a woman that was leaving with her baby. I would be back the very next day and for 20 some days thereafter to sit next to my miracle.
Thank god I didn’t realize most of what I was missing.

Instead, I had to ask permission to hold my child.
I had to ask permission to change his diaper and feed him.
Our birth announcement was met with uncomfortable silence and concern.
I had to pump every 3 hours, around the clock, to make sure my milk supply didn’t dwindle.
I quit my pain medication early so that I could drive to the NICU every day.
My every move was monitored closely by a nurse. I learned how to care for my son under the careful watch of a medical professional, every mistake pointed out.
My very first act as a parent was to fail my child, causing him pain, potentially setting him behind, and putting his health in serious danger. And the rational side of me didn’t give a damn that there’s was nothing I could have done to prevent it.
All of my pictures from Ryan’s first month include tubes and wires.
The sight of a Wheaton Franciscan hospital band or the smell of the hospital soap can still, 2 years later, make my heart stop and instantly tears come to my eyes.
I hauled around an apnea monitor for the first five months of his life.
I visited my son in the hospital on his 1st Christmas.

I waited and tried so hard not to get my hopes up that he would be home by Christmas. I still cannot bear to think of my beautiful baby boy laying in his crib in the hospital, alone, on Christmas. My baby boy, the miracle that he is, deserved better than that. I know that he didn’t know any different, but that’s not how it’s supposed to be. A baby’s first Christmas is supposed to be filled with anticipation and wonder and ridiculous 1st Christmas outfits and too many presents. Not bottle feedings and apnea monitors.
The day I finally accepted that he wouldn’t be home was one of the hardest days. Christmas music was everywhere, taunting me and reminding me that while everyone else was enjoying the most wonderful time of the year, I was dying inside. I was going to have to leave my baby on Christmas and try to move on. We put up a pretty strong front that day. Michael stood by me, telling everyone happy Thursday with me. Immature, yes. Necessary for survival, yes. Two years later, my eyes still tear up thinking of that first Christmas.

The day I brought him home, I sat in the corner of the couch with my tiny baby in my arms and cried.
I cried for the months I didn’t think I could have a baby.
I cried for every drop of blood that I lost.
I cried for every moment I spent in the hospital, thinking I would be there a hundred times longer.
I cried for all of the things I lost out on.
I cried for every minute I spent in the NICU.
I cried for my baby’s first Christmas.
And most of all, I cried because I was happy. I cried because I didn’t think I would ever get to this point. To the point where things finally felt normal. And, I think for the first time since December 4, 2007, I breathed a sigh of relief.

Every milestone that he achieves makes my heart swell. Every time I see him smile, I can’t help but think that I am the luckiest person alive. I had a 10% chance and nothing but problems and I am lucky enough to end up with the most amazing baby boy.
I am lucky that there are no feeding tubes or oxygen requirements.
I am lucky that his reflux, although messy, was effectively managed with the first drug we tried.
I’m lucky that we’ve only been to the ER for wheezing twice and that his lung issues are easily controlled with an inhaler.
I’m lucky that he has grown to be at the top of the charts for his actual age.
I’m lucky that he shows no signs of developmental delay.
I’m lucky that I’ve found an amazing group of preemie moms who understand what we’ve been through and have supported us along the way, celebrating what would seem like the smallest accomplishments.
I’m lucky that he is alive. Thousands of mommies every year never bring their babies home.

Would I do it all again, yes. In an instant. Because being Ryan’s mommy is exactly what I wanted to be when I grew up. He is everything I never knew I needed. When I look at those gorgeous, big, blue eyes, everything else is just secondary.

Please consider supporting the March of Dimes. For Ryan. For Rebecca Ann. For Robbie, Cameron, Evan, Lily, Carter, Aldon, Erin, Lucy, Garrett, Charlie, Lily, Robinson, Evan, Gunner, Emma, Campbell, Savannah, Kevin, Cooper, Hunger, Natalie, Ben, Fiona, Andrew, Brandon, Wren, Jacob, Layla, Eli, Hazel, Maddy, Marino, Skylar, Ella, Sara, Lillian, Chelsea, Sam, Jake, Leo, Jax, Claire, Kiera, and all of the other preemies out there.