Bringing
a new born home from the hospital is usually an exciting and happy time. Our
family had a very different experience.
After
delivering our first child in 2009, we marveled at how perfect she was.
Reagan was 6 weeks old when she started having seizures and was diagnosed with
an extremely rare brain abnormality. Her seizures escalated, and she
needed brain surgery. She was diagnosed with Cerebral Palsy with partial left
sided paralysis. We are thankful for the research the March of Dimes is doing
with Cerebral Palsy in the hopes that it will help all children who struggle
with this diagnosis.
As
you can imagine, we were nervous about having more children but were told we
had no reason to worry. We were very excited when we learned we were
pregnant with twins. After 3 months of bed rest, being separated from my
husband and our 17 month old daughter, I delivered twins in October of 2010 at
25 weeks – a son named Cole and a daughter named Kendall. Kendall was 1
lb. 7 oz. and unfortunately lived for just over a day. Our son,
affectionately referred to as Ironman, was 2 lbs. 2 oz. He went into cardiac
arrest the day after he was born and suffered a brain bleed resulting in a
diagnosis of hydrocephalus and requiring brain surgery twice.
Additionally, he needed eye surgery and will have lifelong vision issues.
We firmly believe the surfactant treatments he received gave his lungs the
support he needed to survive. A treatment available as a result of March
of Dimes funded research.
The
day I was discharged from the hospital, I was looking forward to being home
with my husband and daughter but I was devastated to leave our baby behind,
recovering from surgery, and exhausted thinking about planning a funeral.
As I packed my things to leave, our social worker knocked on the door to say
goodbye and brought in a beautiful box with our daughter’s keepsakes. I
held her blanket as I reached for a beautiful scrapbook. As I flipped
through the pages, I was reminded how tiny her feet were, how beautiful her
little hands were and how much I truly missed a baby I barely knew. I
often look through this box and look at her pictures when I want to feel closer
to her. I can guarantee that without the March of Dimes, I wouldn’t have
had the energy or strength to put together that box or to scrapbook such a
beautiful album that brings m closer to our baby girl.
Room
201 Bed 1 Medical Record 8334416 – those numbers will forever be engrained in
my memory and became the passwords to see our baby boy. Every day for 94
days we visited our son in the NICU. A room with 25 beds lined with
monitors, machines and noises you can’t imagine unless you’ve lived
it. You sit next to the isolette for hours watching your baby breathe and
hoping it will continue. Some days just hoping for no change because
that’s better than going backwards. You learn a new vocabulary of medical
terms that were part of our daily questions for the doctors.
Our
son, Cole wasn’t home for a first Halloween onesie, first Thanksgiving onesie,
or a first Christmas onesie. He had no clothes or blankets for what felt
like forever. But for every holiday, our son had a scrapbook page with
his name, picture and other graphics decorating his isolette. Some days
it was the only color in the room. Without the March of Dimes, the nurses
wouldn’t have had the supplies to make a photo book or to print pictures to
decorate his isolette. It is amazing the happiness that something so
simple can bring when day after day is filled with bad news. I used to
open our son’s isolette drawer hoping new pictures were in his photo
book. The first time he had food not TPN! His first bath. The
first day he wore clothes. All in a book for me to look at when we were
having a tough week. Keepsakes for both our children to better know
Cole’s humble beginning and have something to remember their sister.
These are but a few examples of how the March of Dimes has impacted our family.
The
March of Dimes made us feel like Colton was our son. Not 8334416.
Not Room 201 Bed 1. In a world where you struggle to figure out how to be
a mom when you can’t hold or feed your baby or tell him it’s going to be ok, just
being our son and not a number makes all the difference in the world.
We must keep these feelings alive to remind us how important this cause
is for those who will come after us. So let’s not forget how important our
individual contributions can be when we pool our efforts, energy and financial
resources to make a difference.
1 comment:
I take so much for granted, and although I have kept up with Danielle's posts this really touched me again. I type this with tears rolling down my cheeks for the babies that have so much to struggle for, and for the parents who are so thankful for every moment they get to spend with their children. I promise to not take my kids for granted, and to enjoy them as much as I can...
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