CHD Awareness

I copied and pasted this from www.thelittleheartthatcould.blogspot.com. Sorry I waited til the day before to post it. Even if you cannot participate, read the facts about CHD's posted below.

CHD Awareness Balloon Luanch
It's time to spread the word.
I'd like to invite EVERYONE EVERYWHERE to join in and launch as many balloons as possible on Sat. Oct. 3rd. On each balloon you can attach a card, found below, giving facts about CHDs. Visit a dollare store near you and purchase as many balloons as you'd like! Print and attach your cards and launch away!!! (Please feel free to copy and paste, add or delete any information found on the card.) Hopefully this valuable information will provide some awareness of CHDs. Please feel free to tell your friends, family, and carepage families.

Congenital Heart DefectsTell someone you love about Congenital Heart Defects!

~CHD's are the most common birth defect in America~1 in 100 children (40,000 newborns a year) will be born with some type of heart defect
~CHD's are responsible for 1/3 of all birth defect related deaths
~20 percent of children who make it through birth will not survive past their first birthday
~Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America
~Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research
~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them~There is no known prevention or cure for any of them
~More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime
~The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year
~CHD is the leading cause of infant death in the US and in every country around the world
Support the Children’s Heart Foundation

Gives me chills everytime I read those facts about CHDs. So glad Trisha is getting out there and spreading the word. She is a strong, Godly woman who has been through a lot this year.

News on Mackynlee: We are out of the pod! YAY!! Still have our chest tube. BOOOOOO. Doctor wants chest tube to stay in one more day. We have had a crazy morning. The new baby in our pod went into cardiac arrest two times within 30 minutes this morning. The first time I wasn't kicked out because I was feeding Mackynlee. The second time I was kicked out. I heard them request some kind of surgical something. Keep this family in your prayers. He is a new baby here at CHOP, not even had surgery yet. Mackynlee and I got comfy in the rocking chair, then the person came to get blood work. Then we got comfy again, and Mackynlee projectile volmitted her formula. That's what the nurses get for not giving her a bath before now. She needed one so bad. She enjoyed every minute of it. I will post pics of it in a little. We were picking about it saying she was getting a spa treatment. There were three of us bathing her. Now I am praying she can rest. She is so tired, her eyes are blood shot. She cannot sleep for long periods of time in the pod, but now that we are in the room, maybe we will both sleep. The nurse has turned off the buzzers on our monitor. We have the bubbling of our chest tube, and the bubbling of the other baby's chest tube behind us. It is about to put me to sleep. The only problem, and I don't want this to sound mean, the baby behind the curtain sounds like she's gurgling/volmitting. Respiratory is in there and I don't know what kind of problem she could be having, but it sounds disgusting. Great, now the dad just walked in, he is noisy. Pray Baby Mackynlee gets more than a ten minute nap. She needs it so badly, and every little noise seems to interrupt her sleep. Other baby is gagging again. Gross. It is a tiny baby but is sounds like an adult.

The good thing about being in this room, I am so settled. That feels so good. I have my computer set up, I don't have to get it out of my backpack and put back. I have plug-ins to charge my computer, my cell phone, and Mackynlee's portable DVD player. I think this is going to be a great place to hang out for a few days with baby girl. Especially when that tube comes out!!!

I am going to the PRMH at some point today to get her stroller. Her nurse said I can take her for a stroll around the hospital. We just can't leave the 6th floor. At least I can take her to the family room and get me some coffee from time to time.

I have shared the following poem with my readers before, I want to share it again today. This is for you Trisha in memory of LittleJohnny. Keep on keeping on. Every word of this poem is so true. Whether you win or lose the battle, it applies to every life affected by a CHD. I see it here at CHOP>

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 his face…
They haven’t got to hold him 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.”

Author - Stephanie Husted

Stephanie Husted is a free-lance poet who has a child with Hypoplastic Left Heart Syndrome. She enjoys encouraging other families through the written word. She lives in Michigan with her husband and two sons, Colin and Braeden