Heart Week

This week is CHD Awareness week.  The statistics are 1 in 100... one in every one hundred babies are born have a congenital heart defect.  Owen wears his scars proudly and they tell a mighty story.  One of a brave boy who has defeated all odds.  The zipper down his chest has been opened four times.  He has eight scars where chest tubes have been placed, the most painful part of any heart surgery.  He has multiple scars on his arms and neck from PICC lines and IJ lines.  His Gtube still used daily to help him get enough nutrition. Then you look at up his smile and sparkle in his eyes and it has all been worth it! 

What is a CHD?
Everyone has their own story.

Owen's story is..

 THREE open heart surgeries to "fix" a broken heart

TEN cardiac catherizations
FIVE years on oxygen

ONE Heart Transplant
TWENTY IVIG infusions (and counting)
ELEVEN Cardiac Biopsies (and counting)
Countless lab draws, hospitalizations and daily medications.. forever.

Do you want to know what you can do to help??

*Donate Blood* -- Owen has had more blood transfusions and blood products than I can count.  I am guilty of putting this off.  You can organize a blood drive or just simply donate yourself.

*Pulse Ox Testing* -- If you, or a loved one, is pregnant and having a baby did you know you can ask for a simple, non invasive pulse ox test at the hospital.  Some states are mandating pulse ox testing {finally} and this can be an early indicator of a CHD in your infant.  1 in 100 babies are born with a CHD and many go undiagnosed. 

*Sports Physicals* -- This isn't one that gets talked about a lot, but my heart just breaks when I constantly hear on the news about a child coding on a football field or basketball court.  Most of the time, it is because of an undiagnosed heart condition.  You can ask for an ECG test during a sports physical and many times this will indicate if there is something going on with your child's heart.

*Organ Donation*-- This is obviously one that is so close to my heart!!  Talk about organ donation with your loved ones.  Make your wishes known to those closest to you.  One organ donor can save many lives!!  We pray for Owen's donor family all the time and hope they know how grateful we are to them!

*Raise Awareness* -- I feel like Owen is a walking billboard for CHDs. There is no celebrity endorsers for CHDs, you probably won't hear any big news coverage, there is no major marathon to raise funds for research, and no big funding coming to the CHD world.  There is no cure.  There is no pharmaceutical company that can make millions off a miracle drug to fix a broken heart.  So as heart moms, we are doing what we can to support each other and pray that our doctors continue to find surgical advancements to improve the quality of life for all these kids.

Six years ago, we had never heard the word Congenital Heart Defect.  Our world has forever been changed.  Too many of Owen's friends have fought so hard but lost their battles way too early.  My heart just aches when I think back and see each of their little smiles.  Life is so short and can be so unfair.  The greatest lesson I have learned in the past six years is to cherish every moment! 

Please continue to spread CHD Awareness this week.  You can share this post or you can share the photo below that was made for me by another CHD friend.  Each day we have someone new post on FB that their infant was diagnosed with a CHD and they are terrified!!  They had never heard the words heart defect or even thought of it as a possibility.  I understand because we were that couple in the ultrasound room.  Thanks you.