Friday, February 6, 2015

WEAR RED, 2015 version!




HEART DISEASE IS THE NUMBER ONE KILLER OF WOMEN
AND THE NUMBER THREE KILLER OF MEN!!!
CONGENITAL HEART DEFECTS AFFECT 1 in 100 babies born.  1 in 100 babies affected make it the NUMBER 1 birth defect for babies!!!  Congenital Heart Disease Awareness week is February 7th thru 14th.  So, in honor of William, I wanted to share a little about the impact of heart disease on everyone.  And, I wanted you all to be encouraged to WEAR RED!!!
William Howard Cunningham was that 1 in 100.  During his short little life, we have learned so much about congenital heart defects and the impact that they have on these babies (who grow into big kids and adults).  The impact of congenital heart defects is huge.  1 in 100 babies are affected and so are their families (immediate and extended), communities, healthcare providers, hospitals and their staffs.  The list could go on and on detailing who is affected by Congenital Heart Defects.

After having a baby with a CHD, I have a slightly higher risk of having another baby with a CHD.  2% instead of everyone's 1% chance.  So, we have taken every precaution with this pregnancy to check Baby C#4 (BABY BEAN)'s Heart.  2 fetal echos done, 2  meetings with the cardiologist.  AND, GREAT RESULTS.  We are truly blessed with a healthy heart that has 4 pulmonary veins in the right place, 4 chambers, all major vessels in the right place.  William Howard Cunningham has protected his baby brother/sister.  Thank God for our amazing Red-Headed Angel!!

 
2 days after his second open heart surgery.

William's story has reached so many people, but he was just one baby with a broken heart.  Chris and I met so many others with the same story just a different defect and different outcome.  Each baby's story is different yet the same.  Babies born with heart defects endure numerous exams, many hospital stays, many surgeries or procedures.  And, so did our precious Will.
In the past, heart disease awareness was something that I thought about at work but never much at home.  However, 2012 changed our lives forever.  HEART DISEASE AWARENESS MONTH is A HUGE FOCUS in our home.  We are WEARING RED and telling our boy's story. 
We are also thinking about our family members who have been affected by heart disease from Chris's Grandpa Miller (or Great Papa Miller to Mackenzie and Carson) to Grandma Miller (because a Stroke is a form of heart disease) to my Grandma PeeWee.  She was the picture of a time bomb waiting to go off (high blood pressure, high stress, 1 1/2 pack a day cigarette habit) when it did last February.  At the age of 84, she went from uncontrolled high blood pressure (not really uncontrolled if you ask her) to QUADRUPLE BYPASS.  And, then came cardiac rehab (that EXERCISE word) and she came out of it all shining brighter than ever and CIGARETTE free (mostly).
When Chris and I started talking about heart defects after William's diagnosis last May, I began to think about how many other babies I know or knew have had heart defects.  I thought of my friend Brooke who had a PDA closure as an infant and now is a mother of two little boys.  I thought of Kinlee, my friend Tera's daughter, who had a septal defect and is now a beautiful, sassy 15 year old.  I thought of Kennison, my friend Jamie's daughter, who has an arrythmia, but struggles daily to bring it to other's attention.  I think of the sweet girl whose heart races and no one knows most of the time.  I think of the procedure that she will likely need for the arrythmia to go away! I thought of the first baby I detected a murmur on in the ER who went have open heart surgery a week later and is now a wild 9 year old boy.  I thought of Jacob, my friend Stephanie's son, who also had TAPVR and is a growing 12 year old now.
And, I think of Harlie, a baby who I met in the PICU, whose defect is so very different from Will's but whose story of detection is eerily the same.  I think of Audrey, my cousin.  She and William were the two babies born in the Pierce family this year...and, they both had/have heart defects.  Audrey has a bicupsid aortic valve and a small septal defect.  My cousin, Sally (Audrey's mom) and I never dreamed to know or learn as much about pediatric cardiology as we have this year.  You see, we are both nurses, and have learned a few things about heart disease in adults but not pediatrics.  Pediatric Cardiology is new game for us.  But, we both embraced this time to learn to know what is best for our HEART KIDDOS!!!  I think of Kayden whose mom we met at Ronnie's House.  Kayden and Will were quite the pair for the PICU nurses.  Those boys were HIGH maintenance at times.  I think of Ella and her family.  I think of the Dwyers who I have now gotten to meet in person who have had 2 kiddos have heart surgery.  I think of Ryder, whose parents we never officially met, and his long stay in the PICU.  And, now, we also think of the Congenital Heart Defect Families.  This is an amazing group of families who have the same story as us but with all different endings.  Check out their Facebook page Congenital Heart Defect Families or their website: www.chdfamilies.org
My boy tube free---only lasted a few minutes, but this is a reminder that Congenital Heart Defects aren't seen on the outside.  Unless, you get to catch a view of the cool scar on his chest!!  This picture makes this momma tear up.  It was the one on his funeral program...and, I just found this onesie when going through baby clothes.  Man, I miss this little boy!!!

Another tube free pic!  Looks like a healthy baby, huh??  Perfection, if you ask us.  He is so calm.

Please think of William this month.  But, also think of the other babies like him who are no longer with us on Earth.  Think of the babies here on Earth who are fighting the fight of their life each and everyday.  But, also think of how your life has been touched by heart disease.  And, WEAR RED this month to honor those affected by heart disease.
WEARING RED IN FEBRUARY---"THAT WAS EASY!"

Once again, our family will be participating in the HeartWalk in May.  What an amazing thing to see people of all ages come together to support Heart Disease.  It is a year long fight.  Be ready for the soliciting of money--all of the monies Will's Strong-Willed Warriors raises goes to Congenital Heart Defect Research in the Midwest!

 
The American Heart Association has so many facts that tell everyone why they should care about heart disease.  www.heart.org  Check it out---so much info in one place.

1 comment:

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