Where has the time gone Braden? Who would have guessed it? 5 years little man --and now we are registering you for kindergarten in the fall! I see the calendar and realize it's been
5 years, since your 4 icu stays (nicu, picu, sicu, cvicu), 20+ hours on heart-lung bypass machine, 8 total days on a ventilator, 2 months in heart failure, 1 cardiac cath, dozens and dozens of EKG's & Echo's,1 NG tube, 2 open heart surgeries, 3 holes, 1 leaky valve, and a whole lotta things in the wrong place. Who knew 5 years later the only problems affecting your health would be from playing so rough in ways we never thought you would??? You are so strong and resilient. Sometimes I think I forget just how lucky we are that you are
so healthy. Most of the time, I don't feel that I am grateful enough for having you here everyday. And most days (especially when you are stubborn)I forget that you are my miracle boy.
February is Congenital Heart Defect Awareness Month and the anniversary of Braden's first open heart surgery. So, I thought I would let you in on a few interesting facts...
- There are about 1 million people alive in the United States alone who were born with a heart defect
- Heart defects are the #1 birth defect
- Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect -- of those, 87 will be born with a congenital heart defect -- that's more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77)
- It affects about 1% of newborns -- over 40,000 babies are born with heart defects yearly
Braden had all of the following defects...- TGA (Transposition of the Great Vessels) occurs in 5 to 7 percent of all congenital heart defects. Sixty to 70 percent of the infants born with the defect are boys.
- DORV (Double Outlet Right Ventricle)-Normally, a ventricle has just ONE outlet. For the left ventricle, this is the aorta. For the right ventricle it is the pulmonary artery. In DORV, both of these "outlet" blood vessels - aorta and pulmonary artery -arise from the RIGHT VENTRICLE, either totally or to a great extent
- Patent ductus arteriosus, or PDA, is the sixth most common congenital heart defect, occurring in 5 to10 percent of all children with congenital heart disease. Patent ductus arteriosus occurs twice as often in girls as in boys.
- A ventricular septal defect, or VSD, is the most common kind of congenital heart defect
- MVP (Mitral valve Prolapse) affects 5% to 7% of the population, the cause is unknown. Mitral valve prolapse occurs more often in women than men; it often occurs in people who have no other heart problems, and the condition may be inherited.
His defect was literally one in a million. A handful, at most, of all the people walking around today with a CHD have had Braden's exact defect. We were so lucky to find a terrific
Cardiologist, and
Cardiovascular Surgeon. And more so, we are truly blessed to have a family, and community of all faiths who pulled together, and prayed us through it. People often ask us how we got through it. I kiddingly say "lots of drugs" but mostly I know it was the power of prayer and my faith in my Savior. During the first year of his life we were in survival mode and I never had the time to process everything until much later. Even today looking back at at his scrapbooks, it seems like the events inside them happened to someone else. The photos make it all very real again. Even Braden, who loves to look at pictures of himself, generally skips over that scrapbook...
5 Years ago today we gave Braden to a scrub nurse and prayed he would be alright... 5 years ago today, 10 hours passed and it felt more little 10 years...5 years ago today I couldn't even imagine signing him up for another soccer season, or that my biggest health worry for him would be from riding a quad or snowboarding. I got to hold Braden for the first time after his surgery on Valentine's Day. I remember thinking how ironic it was that we had a ''heart baby's" heart fixed in the month synonymous with love.

Once a year, I pull down this little pale blue box, covered in yellow stars and I sift through the items inside and remember how loved we were and how blessed we are. It holds basically all the things I couldn't smash into a book...
- a pediatric stethoscope,
- a few NG tubes and Kangaroo bags (from when he was fed by tube)
- his camo "No-No's" (Cast-like things for his arms so he couldn't pull at the tubes)
- the pink elephant scrubs he wore into surgery (shhh, they don't know I swiped those)
- a tiny oxygen mask from the PICU stay
- the smallest blood pressure cuff you have ever seen
- the O2 cords he had on for surgery
- some EKG leads
- and a few other odds and ends I collected along the way
We love you Braden and we are so happy you got the chance to be the great little, tough, stubborn boy you are. Thank you a million times over to any nurse, PT tech, surgeon, doctor, cleaning person, radiology tech ect ect that had a hand in helping make Braden well. The best part about this whole experience has been talking to other parents of CHD kids and being there for them during a scary time. Most of you regular bloggers read his story back in August when I reminisced about the 4 yr mark from his final surgery. So, I won't add more pictures, you can see them and read about his heart journey
here... We are linked to several CHD parent support sites and I welcome the chance to share our story of hope, success and to help spread awareness.
Oh, and bloggers, PLEASE--- don't tell Braden about 'my' box. He loves to play doctor and I am afraid he will confiscate everything in it for his own doctor bag!!! Tee-hee-hee...