My PIc

 

Here are some of the alarming facts about CHD's. Did you know That Congenital heart defects are America's #1 birth defect. Nearly one of every 85 babies is born with a CHD in the US.

Congenital heart defects are the Number 1 cause of birth defect related deaths.

This year almost 40,000 babies will be born with a congenital heart defect in the US. 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.

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.


**LINK FOR PETITION**

http://www.gopetition.com/online...

WE NEED TO MAKE CHILDRENS' HEALTH ISSUES OUR PRIORITY !

Don't Tell Me

I found this poem online today and it really touched me because its so true


Don't Tell Me
Please don't tell me you know how I feel,
Unless you have lost your child too,
Please don't tell me my broken heart will heal,
Because that is just not true,
Please don't tell me my son is in a better place,
Though it is true, I want him here with me,
Don't tell me someday I'll hear his voice, see his face,
Beyond today I cannot see,
Don't tell me it is time to move on,
Because I cannot,
Don't tell me to face the fact he is gone,
Because denial is something I can't stop,
Don't tell me to be thankful for the time I had,
Because I wanted more,
Don't tell me when I am my old self you will be glad,
I'll never be as I was before,
What you can tell me is you will be here for me,
That you will listen when I talk of my child,
You can share with me my precious memories,
You can even cry with me for a while,
And please don't hesitate to say his name,
Because it is something I long to hear everyday,
Friend please realize that I can never be the same,
But if you stand by me, you may like the new person I become someday.

Judi Walker
(In Memory of Shane)
Copyright 1998

Also In Memory of Aryn James

Ethan

Ethan is a mama's boy if I ever met one. If he could be by my side 24/7 he probably would be. He has his own little story of his own he has always had problems with asthma. At three weeks old he was hospitalized with RSV for 3 weeks. At first he only stayed for two days but when they sent him home he was only home for 24 hours before he turned blue on me I rushed him back to the ER, they took his pulse o2 reading at it was only at 80%. And when they did his blood oxygen levels they were down to 67% they worked with him for a little bit but he came really close to being put on a breathing tube but luckily they were able to get it back up with lots of suctioning of the lungs and oxygen. then right before his first bday he was hit with a horrible case of the flu when i took him in to the ER his temp was up to 105.6 and that isn't a typo and once again his o2 levels where down again. so growing up he was always called Mr wheezier. But he is getting ready to start preschool and he says he wants to be a cop when he grows up.

Tommy

Tommy is my five year old, he is getting ready to start kindergarten. He is super excited. He has been in preschool since he was three and he loves school. He says he wants to play baseball when he grows up, and he can throw a ball really far and hard for someone his age. He is such a sweet little boy when it comes to me but watch out cause that little boy has a major attitude and I have no clue why. He is a smart as a whip I don't know if it is normal or not but he can write and count to 100. You tell him how to spell something and he can write it out for you. Man I love him he is my little buddy.

Aryn James 1/28/08-04/29/08

Aryn born on Jan 28, 2008 who was born with a congenital heart defect called Hypoplastic left heart syndrome. HLHS is where the left side of the heart is underdeveloped. He underwent his first of three surgeries at one week old, he had complications coming of bypass almost had to be put on ECMO (life support), but made it through. He spent his remaining three months on earth here with us on and off breathing machines. having rhythm problems going from bradycardia (slow heart rate) some days and tachycardia (fast heart rate) others. The days in between there were good days and bad days. My favorite days were when we could walk around the unit with him and see him look around so innocently at all the new stuff out side his room and when he was full of smiles. I loved that little boy with all I had I sometimes feel like it just wasn't enough to keep him here. His last week here with us was really touchy his second surgery keep being rescheduled finally it was scheduled for that Monday until he lost his broviac line (similar to an iv but goes in the chest and is a little more permanent) to a clot and he was no longer receiving his heart meds for is rhythm and it was rescheduled once again fro that following morning which was a Sunday but unfortunately the morning of his surgery moments before he was to be wheeled out to the OR he started having apnea spells and started turning grey in my arms as i am holding him so i call the nurse in she looks at him and immediately took him from me turned on all the lights, called in the docs and in a matter of 20 min it went from me holding my baby spending time with him before his surgery to complete CPR they did CPR for an hour and half. If your wondering why so long they were trying to get lines in him to be put on ECMO but he also had a clotting disorder so every time they tried he would clot off plus it made it even harder cause his blood pressure was so low which made it even harder once they finally got him hooked up to life support to give his heart a break. he was on life support for three days on the second day the doctors sat me and my fiancee down to tell us that it didn't look so good he hadn't moved or woken up yet and his kidneys had shut down the the next day they did an EEG and it showed very little brain activity mean while he was having seizures so we decided to let him go and be with god.