Since February is reserved for Heart Awareness Month....James and I have been doing some research on the HEART....Ever since Jaden has been born our hearts have been so heavy learning every thing we can about our hearts, how they function and also gain more insight and knowledge about raising AWARENESS for Congenital Hearty Defects...We know there are several different Heart Conditions for Adults but we will always have a passion for Heart Defects in babies just because Jaden's heart condition has changed our lives......
The Baby Buggy Crew that came to get Jaden from Kosair...
My first time getting to see Jaden, except for the first couple seconds when he was first born ....About to take him to the Children's Hospital.....At this point we had no idea what was wrong with his heart....Our Ultrasound during pregnancy didn't show that Jaden had 5 major heart defects.....
I was Just arriving at Kosair 3days post-op from Jaden's first Open Heart surgery...Jaden was born by C-Section at Hardin Memorial Hospital and he was then taken 1 hour north to Kosair Children's Hospital...I couldn't be with him during his First Open Heart.....
As I look at this picture I can recall everything that was running through my mind here as I stood over my baby....his chest was wide open and just covered with a clear piece of wrapping....We could see completely inside his whole chest cavity, watching his heart pump with everything it had......something I will never forget.....My babies not going to make it....He's gonna die.....Oh what are we going to do....Why God????? This is not fair......I want him to be buried right in the middle of Mammaw and Pappaw....I want Kasper and Pastor both to preach and I want all his favorite songs that we played to him while he was perfect inside my tummy played at his funeral....
James and I both felt that our baby was going to die.....This feeling.... we will never ever forget.....As a new mom I worried "Am I a bad mom because I'm thinking these horrific thoughts about my baby"?????? I pondered that question for months down the road and my only comfort was in the fact that the Lord was in control and He never left our side....
This was the first time I got to hold my sweet baby....Jaden was 1 month old....
Somewhere…someplace…today…A man and a woman embrace…Their baby is in surgery…They long to see her face…They haven’t got to hold her yet…Without…a cord or line…They pace the room awaiting news…And hope she’ll be just fine.Prayers fill this busy waiting room…And mom and dad are scared…Somewhere…someplace..today…The tiniest hearts are repaired.
Somewhere…someplace… today…A little boy fights…just to live A father holds his tiny hand…His love…all he can give…The doctor’s are all baffled…They fear that he might die…Somewhere…someplace…today…A family says goodbye…
Somewhere…someplace…each year..More than 40,000 families will see…What it means…when something’s wrong…They’ll face a CHD.Today…for just a moment…Stop…remember…reflect…Make time to tell someone you know…“I’ve been changed by a heart defect”.
As I look at this picture I can recall everything that was running through my mind here as I stood over my baby....his chest was wide open and just covered with a clear piece of wrapping....We could see completely inside his whole chest cavity, watching his heart pump with everything it had......something I will never forget.....My babies not going to make it....He's gonna die.....Oh what are we going to do....Why God????? This is not fair......I want him to be buried right in the middle of Mammaw and Pappaw....I want Kasper and Pastor both to preach and I want all his favorite songs that we played to him while he was perfect inside my tummy played at his funeral....
James and I both felt that our baby was going to die.....This feeling.... we will never ever forget.....As a new mom I worried "Am I a bad mom because I'm thinking these horrific thoughts about my baby"?????? I pondered that question for months down the road and my only comfort was in the fact that the Lord was in control and He never left our side....
This was the first time I got to hold my sweet baby....Jaden was 1 month old....It’s Congenital Heart Defect Awareness Month everyone, so spread the word and spread awareness. Here are some little known statistics about CHDs, research, etc. taken from the Children’s Heart Foundation:
Congenital Heart Heart Defect Statistics and 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.
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.
Congenital Heart Heart Defect Statistics and 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.
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.
Somewhere…someplace… today…A family is waiting to hear…Is something wrong with their baby?The answers aren’t quite clear…This family has entered an unwanted world…And they just don’t know what to expect…Somewhere…someplace… today They first heard the words: heart defect. And how they hoped this was not true…And thought… this cannot be…I too… know just how this feels…For one day…this was me.
Somewhere…someplace…today…A man and a woman embrace…Their baby is in surgery…They long to see her face…They haven’t got to hold her yet…Without…a cord or line…They pace the room awaiting news…And hope she’ll be just fine.Prayers fill this busy waiting room…And mom and dad are scared…Somewhere…someplace..today…The tiniest hearts are repaired.
Somewhere…someplace…today…A child’s growing fast…Smiling,laughing,thriving…His mom thinks…can this last?It’s almost easy…to forget…That anything is wrong…Somewhere…someplace..today…Her child seems so strong.
Somewhere…someplace… today…A little boy fights…just to live A father holds his tiny hand…His love…all he can give…The doctor’s are all baffled…They fear that he might die…Somewhere…someplace…today…A family says goodbye…
Somewhere…someplace…each year..More than 40,000 families will see…What it means…when something’s wrong…They’ll face a CHD.Today…for just a moment…Stop…remember…reflect…Make time to tell someone you know…“I’ve been changed by a heart defect”.
~Husted~
Jaden's Diagnosis:
Hypoplastic Right Ventricle
Pulmonary Valve Stenosis
Ventricular Septal Defect
Atrial Septal Defect
Missing Patent Ductus Artery
Grade 3-4 Intraventricular
Hemorrhage
Hydrocephalus
Pulmonary Valve Stenosis
Ventricular Septal Defect
Atrial Septal Defect
Missing Patent Ductus Artery
Grade 3-4 Intraventricular
Hemorrhage
Hydrocephalus
Heart Fully Repaired after he underwent his 2nd Open Heart March 23,2009
So out of the 35 Heart Defects....Jaden was born with 5 that was just listed.....
We are so thankful for the Children's Heart Foundation....Without all the research that they have done our son might not be here with us today.....We do know that the heart condition that Jaden was born with, he could have been a part of the number that's highlighted in red at the top of our post......As his 2nd Birthday is coming up we know that everyday with him is a blessing in itself...We are praising the Lord for all that He has done and claiming our life verse in Jaden's life...
He healeth the broken in heart, and bindeth up their wounds Psalms 147:3
That was a very good post. Thank you so much for all of the information on heart defects. It is a cause that I would love to know more about and contribute to somehow. It hurts so badly to see those pictures of your first days and months and the fears and hurts you faced... We love you.
ReplyDeleteJames and Kacey, I am in awe at everything you have been through and the love that you display for our Lord Jesus Christ. Jaden is so blessed to have two of the most unselfish, faithful parents. Thank you for sharing such a personal story that I know will help others.
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