It was 5 years ago today. It seems like a lifetime ago and just yesterday all at the same time. Since then we’ve had two healthy and active little boys that bring us so much joy, we’ve moved, we’ve celebrated births and deaths of friends….So much has happened and yet I can still remember every moment of that day and the whole experience. I can still smell the distinct sterile odor of the hospital, and the faces of the doctors and nurses probing at me and our tiny baby girl are imbedded in my mind forever.
At just 26 years old I was so happily naïve. I imagined (like most other new moms) nothing but a blissful experience, bringing our little girl home to her nautical pink room and happily ever after. The term Micro Preemie was so far from my radar.
I did everything “right.” I cut out caffeine, deli meat, and everything else remotely off limits, I was young, fit, and healthy. But at just 16 weeks along, I had a placental abruption (and no one knows why). I was on home bed rest for about 4 weeks, and then as it was clear the abruption was only getting worse, I was moved to hospital bed rest at about 20 weeks gestation. The amount of blood leaving my body daily was beyond unsettling, and I was feeling increasingly sad, and guilty, and mad at my body for being incapable and letting me down. Yet I was determined to stay in bed and keep my baby in my deteriorating placenta as long as possible. Doctors often told me I didn’t have to keep going like this, but for me that was not an option.
In my weeks in the hospital social workers visited us regularly, and then as I got farther along, the NICU team came by to prep us and come up with a “game plan.”
While I know they meant well, I could tell they were trying to push us in the direction of doing comfort and care if our little girl was born before the crucial 24 week mark. Comfort and care I should point out is holding our daughter and trying to keep her
comfortable until the end. Out loud I agreed that’s how we would proceed, but
inside I couldn’t imagine it. When it was clear our daughter was coming at just a day shy of 24 weeks gestation and what most call “viability” we were put in an impossible situation, but for me the answer was clear. We would do everything we could to save our little girl. I think many of the doctors were not thrilled with our choice, but I guarantee you when it’s your baby and your life, it’s not a decision based on statistics. We had to make a decision that no one should ever be faced with and this
was just the first many.
Our tiny little girl was born on March 10th, 2009 weighing just 1lb 3 ounces and 12 inches long. We didn't get to hold her or awe at her as you always imagine, there was no first cry, just a room full of a focused medical team carrying on so matter of fact. She was poked at and prodded and inserted with tubes from the moment she came out. We named her Eleanor Evans (Ellie); a strong name for this little being that needed all the strength she could get. There were so many machines, tubes,
procedures, so many choices and roads to go down…it was daunting and the
biggest roller coaster I’ve ever experienced. Hoping for a miracle, the line of giving
her the best chance and pushing too far was a line that was easily and often
On March 19th after I’d gone home briefly to rest, shower, & change I somehow knew that I’d be going to the hospital to say goodbye to our little Ellie. When I arrived, the
nurse whom I found the greatest comfort and rapport with gave me a look that
said it all. She told what I already knew; her lungs and her body were just too weak and we’d pushed far enough….
With every fiber in my body I wish the outcome of our story had been different. Like most parents, I would literally give anything to have seen Ellie thrive and grow up with her little brothers. I will live everyday of my life thinking about her and what we missed… But while I can’t change what happened, I can tell you this, even though our Ellie only lived 10 days she changed our lives (and others) in more ways than you could imagine. Because of her we are better parents, we are better people, we give more, we love harder, and we are much more thankful. We are forever grateful to be her parents.
For me, sharing our story today is about celebrating Ellie’s life, honoring her memory, and raising awareness and putting a face to prematurity. Sadly I’m not the only one with a journey like this and for that I am so sorry. I’m hoping that sharing may help one of you…and if not it’s helped me. My journey is an important part of who I am, so I thank you for letting me share.
To honor our Ellie, I’m kicking off a month of “Giving Back, 5 Years Later.” In celebration of her birthday, we want to give back to our local NICU and the families at Maine Medical Center. I’m so excited to announce that we already have generous donations from Boba, The Boppy Company, and Zutano; We are so appreciative and touched by their generosity. We’d love to get more of you onboard as well (companies or individuals). Maine Medical Center has a level 1 NICU with 51 beds and a Continuing Care Nursery with 31 beds, and sadly both are often close to capacity. Here is what they are looking for (and please note that we are only collecting new items with tags or in the box etc):
If you’re interested in participating/donating, or have any questions, please email me at Rebecca@mainelymama.com
Thank you as always for stopping by and taking the time to read.
I'm Rebecca, a Maine mom of three energetic young boys and wife of a lobsterman, living in my favorite place, the coast of Maine. You'll find me here talking about my parenting journey, mom style, recipes, running and exercise, travel, stories from our life in Maine and so much more! Most days I'm just figuring it out as I go - Thanks so much for stopping by!