Before Molly came into our lives I had no idea what a
Congenital Heart Defect was. I had never heard of it. I had no idea what it
meant. I had no idea that it affected so many innocent lives. I had no idea
that is was a huge community of sad, stressed, depressed, yet amazingly strong
families. I had never imagined that 3 letters would mean so much!
CHD stands for Congenital Heart Defect but to our family it
stands for so much more. It means going through a pregnancy feeling scared and
alone. Not being able to enjoy the excitement of all the new things you receive
from your baby shower because you never know if your baby will come home to
enjoy any of it. Not looking forward to the delivery because you can no longer
keep your baby safe and alive. Handing your brand new baby over to a surgeon
and never again seeing their chest without a scar down the center of it. It
means relying on perfect strangers to care for your baby…change diapers,
console her, give her medicine, bathe her, dress her because she isn’t stable
enough for you to do any of it. It means going weeks, maybe even months without being able to hold your baby. It means knowing your doctors and nurses life
stories because you spend more time with them than with anyone else. It means
that some of those same doctors and nurses are now some of your favorite
people, and even your friend. It means watching your child come so close to
death. It means walking into a
hospital to see your baby, holding your
breath the entire way to her room because you don’t know what the picture is on
the other side of the door. It means living in constant fear that one day she
may take a turn and travel down a road you never want to visit again. It means
protecting her from germs. It means living from echo to echo and watching with
one eye as she gets weighed in praying silently that she hasn’t lost weight. It
means watching her kick and scream during echos, EKGs and height and weight
checks. It means being able to read an echocardiogram or an EKG and knowing
what all the of the sounds and alarms of
a CICU mean. It means knowing what it feels like to see so many babies die and
watching the parents go through such a devastating time, wishing you could be there to give them a hug because they are now like family. It means she doesn’t
shed a tear during blood draws because she has had it done so many times that
she doesn’t even care anymore. It means no birthday parties or indoor play gyms
in the winter months. It means that you walk around with bleeding and cracked
hands in the winter from constantly washing and sanitizing them because you
never want to pass anything along to the little one with a special heart. It
means developmental delays and therapy. It means always standing out and being
different. It means never knowing what the future will hold. It means having to
tell her medical history for the 1 millionth time while trying to choke back
tears. It means a common cold could mean a hospital admission. It means being able to function days on end without sleep because you are sitting at your child's bedside while she struggles to breathe. It means round the clock medication. It means watching your child go through withdrawals from all of the narcotics she has been on since birth. It means
shedding more tears than you have ever cared to. It means making life and death decisions for your baby. It means feeling like not only
does your child have a broken heart but you do too. It means feeling sorry for
yourself except you are too busy with appointments and therapy to stop and
think about why you are feeling so sad. It means giving all that you have so
that she has the perfect life. It means giving her all that she wants and needs
because you feel guilty for all that she has endured. It means crying your eyes
out as you update a blog about what CHD means to me.
But more importantly it means love, strength, compassion and hope. It means
believing in miracles. It means celebrating every little triumph. It means knowing that every day really is a gift. It means knowing the importance of blood and organ donation. It means overcoming the odds. It means that
Molly is 1 in 100 which means that we are not alone because 1 in 100 babies are
born with some form of a cardiac defect every day.
CHD means so much more and I could go on and on. CHD means something different to every heart family and every heart baby is unique but they all share a common bond...they are all the strongest, most loved kids on the planet! Please help me to spread
awareness and share Molly’s amazing journey!
