Miracles do happen...and Isaac is living proof of that.
Isaac...you've fought SO hard this year...and you've come a long way!!!
Congenital Heart Defect Statistics & Facts
Congenital heart defects are America's #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Congenital heart defects are the #1 cause of birth defect related deaths.
This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.
91,000 life years are lost each year in this country due to congenital heart defects.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.
Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
The Children's Heart Foundation is the only organization strictly created to fund congenital heart defect research.
In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.
The Children's Heart Foundation has directed almost $2 million to 24 different congenital heart defect research projects.
More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Happy Heart Day!!!
Isaac...well, he's doing the same. Still has low sats...but, he is fine on the O2. He is retching a bit more...but, maybe it's just because he doesn't feel so good. I have NO idea why we were told to increase our lasix...because Dr. Mayman just told me last week that we were going to try to wein him off. ????? But, we do see the pulmonologist tomorrow afternoon...so, I'll go with x-rays (and a diet coke) in hand and HOPEFULLY get some answers. Eli went to school today (yes...hacking on everyone--at least he is on antibiotics...so, hopefully he didn't spread his germs)...he just couldn't miss the Valentine's Day party! Chris came home with all kinds of candy and cards from the ladies...oh my...I'm NOT ready for that yet!
All the heart mama's know....but, it's also Congential Heart Defect Awareness Day (actually week)...and if you don't already know the stats about our little heart babies...here are a few below (I totally stole them from Megan's blog...thanks Megan!).
Congenital heart defects are America's #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Congenital heart defects are the #1 cause of birth defect related deaths.
This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.
91,000 life years are lost each year in this country due to congenital heart defects.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.
Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
The Children's Heart Foundation is the only organization strictly created to fund congenital heart defect research.
In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.
The Children's Heart Foundation has directed almost $2 million to 24 different congenital heart defect research projects.
More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.
In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
Isaac has come such a LONG way. And to be honest....there were many times where I wasn't sure that he'd make it this far. I'm so thankful for all the friends and family that have helped us and supported us during this crazy year. It's been a rough road...to say the least...but, we have so much fight left in us...and I have no doubt that Isaac will show the docs just how strong he is this year!
We would have NEVER thought that we'd be thrown into this "heart" world...but, I am so thankful to have met the most wonderful moms and dads and caregivers....and the doctors and nurses that make it possible for us to have our angels with us. This day, known in our "heart world" as Congenital Heart Defect Awareness Day....will always make us remember to be thankful for the miracles that happen everyday for our "heart" babies...and we will always remember the heart babies that had to leave this earth because they had other callings that they needed to fulfill. Please hug your kids tight tonight...and hug your heart babies a little tighter...
16 comments:
What are you doing. Trying to make everyone cry today??
Have a great day and give the boys kisses for me.
Your post brought tears to my eyes. It's so sad to read those statistics. It's even harder to know that my angel Brooklyn is part of that 4,000 that did not live to see their first birthday. You would think that with the amount of children born with CHD there would be more research and help. How sad.
I'm so proud of Isaac! He's been a strong boy for his family! Good job. Now.. keep that up little handsome man! I enjoyed seeing his baby pictures. What a cutie!
Happy Heart Day! I am definitely hugging my kids tight tonight. Thanks for your great post about CHD awareness.
Hugs Kathy, Joe and boys...
I'm so happy we have each other.
I love you guys and all the other "heart mommies"...
xoxox
Happy Heart Day!
More tears...I plan to write more tomorrow about this since we just got home and I have to get these kids to sleep...but it took every ounce of me not to turn into a big pile of mush when Dr. Mendeloff (our surgeon) gave me a hug tonight at our event.
Happy Heart Day!
Love,
Samantha
P.S. You have me hysterical with your "totally stole these from Megan's site" comment...I can hear that cute southern accent now!
Happy Heart Day!! Isaac is a beauty! Glad to hear that he is feeling better today.
<3,
Jen
That was beautifully written. Hope you had a wonderful day with all your men over there! (and you can totally give little Isaac an extra squeeze!) I hope Eli starts to feel better soon. As for Chris...I think this is only the beginning....YIKES!!
~Cindy
That was beautifully written. Hope you had a wonderful day with all your men over there! (and you can totally give little Isaac an extra squeeze!) I hope Eli starts to feel better soon. As for Chris...I think this is only the beginning....YIKES!!
~Cindy
Kathy thanks for the CHD reminder and the stats. What an education this family is getting from our little man Isaac!
There isn't any doubt, he's a sweet & special angel (as are all the heart babies) You're all in our hearts & prayers every day. Happy Heart Day!
OK Kathy that made me cry! We love you so much and are so proud of the things you do everyday. I look up to you in many ways. I am so glad you have this blog so we can keep up with you guys so far away. Can't wait to see you.
Brittany
Great, I told you that you would make everyone cry!!
Happy Heart Day! I'll be checking back tomorrow to hear how the pulmo visit went.
Little Isaac is amazing! He HAS come a long way. We are all so proud of him! I hope you and your boys were able to cuddle up with each other on our important heart day.
I'm so glad to have you as a part of my life and I never would have met you had we not been introduced to this crazy world. Thanks for being such a positive part of this journey. I can always count on your positivity and humor to lift my spirits. :)
Take care! Oh, how warm is it there? Maybe I don't want to know. It's freezing AGAIN here! I can't take any more of this!
xoxoxo
when you hug ur boys tight give them one more tight hug from me
Okay...I'm trying not to be pushy BUT....How was your pulmo appointment today?
I will be pushy right there with you Vanessa...how was the appt?????
Love ya!
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