Tuesday, February 7, 2012

CHD awareness week!

(ornery face! Happy Baby!)

February 7th-14th is Congenital heart defect(CHD) awareness week! Up until 2010 I didn't really understand what a CHD was or what it meant. Now I know, I see a baby die nearly every week, sometimes several in one week. That is only in my very limited circle of heart families I have come to know. With awareness comes funding, with funding comes Research. With Research comes answers. With answers comes Hope! Help fight this silent killer. Spread Awareness!

Facts about CHDs:

-about 1 in 100 babies will be born with some sort of CHD in the U.S. That is about 40,000 each year.

- about 4000 of them will not live to see their first birthday

- twice as many children die from CHDs than ALL childhood cancers combined yet pediatric cancer gets 5x the funding.

-Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide

-Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research

- The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year.

-It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications
* source ( itsmyheart.org) *



What does it mean (to me) to be a heart mom?
-it means hearing some of the most devastating news you could possibly receive in what should be one of the most exciting times in your life.
-it means having your baby born into a room FULL of healthcare professionals with an observation room full of students.
-it means not getting to hold your baby the day they are born.
-it means handing them over for life saving surgery within days of their birth.
-it means holding your baby with so many tubes and wires that you can't hold them close.
-it means that days go by without getting to hold them at all.
-it means months in the hospital.
-it means watching your child in pain.
-it means doctors telling you over and over they just don't know.
-it means  many many doctors saying "this is bad".
-it means family and friends don't get to meet or hold your baby.
-it means not getting any sleep.
-it means not hearing your baby cry for weeks due to ventilator taking their voice away.
-it means watching them crash and praying for a miracle.
-it means fearing that you may lose your child, every. single. day.
-it means handing them over again, and again, and again, for more life saving surgeries.
-it means being a mommy and not being able to "fix it".
-it means not being able to have play dates and shopping trips.
-it means missing church, parties, holidays and family get together's.
-it means hearing "stethoscope" as one of your daughters first words.
-it means people not understanding my life.
-it means learning medical terminology that you shouldn't have to know.
-it means late night calls to the cardiologist.
-it means giving meds multiple times a day and feeling like the worst person in the world if you forget even once.
-it means having oxygen tanks and medical equipment.
-it means having to scroll through Dr., Dr., Dr., Dr., Dr., Dr., Dr., Dr., ... etc. in your phone book
-it means having so many doctor appointments you feel like your head will explode.
-it means watching your baby turn blue and get out of breath trying to play.
-it means not taking your baby to the park.
-it means being home bound 6 months out of the year.
-it means having your own health deteriorate as your special needs child becomes the priority.
-it means watching fear in your daughters eyes when any nurse is in the room.
-it means feeling like you have betrayed your baby girl when someone hurts her and she looks at you for comfort.
-it means crying yourself to sleep when reality catches up to you.
-it means feeling completely overwhelmed and alone.
-it means living a life you never imagined.
-it means doing more then you thought you could.
-it means people thinking you are crazy and overprotective.
-it means being your child's voice.
-it means having to ask the hard questions.
-it means constant research.
-it means smiling when you are scared because that is what your baby deserves.
-it means that even after the scheduled surgeries their is no guarantee.
-it means my baby will always have half of a heart.
-it means when her heart is tired of working twice as hard as all of ours, it will quit.
-it means not knowing long term results, 5 years ago Ella's conditions were 100% fetal with no hope for intervention.
-it means praying for grace and mercy knowing that your heart could be taken at any moment.
-it means this life is reality and will never end.
-it means that my baby will one day ask questions about her limitations that I won't know how to answer.
-it means celebrating EVERY milestone.
-it means thanking Jesus every night for anther day together.


Life means so much more when you have a daily reminder how fragile it can be. Unfortunately too many babies die from this horrible disease that I hate. Spread awareness, ask questions, be informed! If you or someone you love is having a baby, ask the tech to scan the heart well (even if they don't do more extended research, it will certainly get their attention) Before you leave the hospital with your new born ask for a "pulse ox test" so simple and COMPLETELY painless, it is a little light that they will wrap around the hand or foot to check heart rate and oxygen level. Early detection is crucial. Without early detection Ella would have only lived a few hours, if that. Some defects can go undetected for weeks, months, or even, years. But the fact is you could save a life if you just ask a simple question. I don't wish this upon you, but the fact is it could happen. I never thought it would be Ella. This week tell someone about a heart warrior! 

       This is VERY real



3 comments:

  1. I liked your "What Does It Mena To Be A Heart Mom". I agree with all of what you listed.

    ReplyDelete
  2. I cried. I love you both. You are both some of the most amazing ladies I know!

    ReplyDelete
  3. Wow-what a great post. Love your list- totally relate to every single one! <3

    ReplyDelete