*there's A Day For Hearts

Will's 1st Valentine

Thank you for taking time out of your Valentine's Day to celebrate A Day for Hearts with us!

Our heart baby

Here is a reminder about 2 wonderful, no cost ways to do something in honor of congenital heart defects. One is to donate blood. Every 56 days please. Because of winter storms there is a shortage of over 30,000 units right now. Go here to read why this is important for those with congenital heart defects. If you can't donate consider coordinating a local blood drive. Also make sure to sign your organ donor card (or in TN, the back of your driver's license) and tell your family about your wish to be a donor. The current waiting list for organs is over 100,000.

Congenital Heart Defects Awareness Week 2011

*there's 4 books on hearts (and a giveaway!)

that I thought you might want to know about and that I want to have.

1. Walk on Water: The Miracle of Saving Children's Lives
by Michael Ruhlman

2. In a Heartbeat: A Baby's Heart, A Surgeon's Hands, A Life of Miracles
by Kimberly Russell

3. King of Hearts: The True Story of the Maverick Who Pioneered Open Heart Surgery
by G. Wayne Miller

4. The Parent's Guide to Children's Congenital Heart Defects
by Gerri Freid Kramer and Shari Maurer

This is part of the list of books on congenital heart defects I would like to collect to donate to a hospital or school or heart family. So far I have these three: 

My Heart vs The Real World

by Max S. Gerber

I think "real" is the best word to describe this book. The photos are really good, but they are also very somber. It's not a book you want to pick up to be inspired about how great a heart child's life can be. It does  convey the hard realities of life with a CHD so be warned that you probably won't feel very cheery after reading.

Before My Heart Stops: A Memoir

by Paul Cardall

I thought this one was good to read whether you are interested in heart defects and organ donation or not. The chapters are partially made up of this survivor's blog during his wait for a heart transplant. I love that it is by an adult. There still is not a lot of information out there from adult survivors' perspectives. Adults with severe congenital heart defects have only begun living to older ages recently since some of the surgical procedures are only around 30 years old. Paul Cardall is beloved and admired in the CHD community and after reading this I understood why.

It's My Heart

(image courtesy of Children's Heart Foundation)

This one has a good overview of all the CHDs and explains them in simple terms. I wish someone would have handed it to me the day Will was diagnosed. Seeing all the information collected into one book like that and knowing that it had been provided to thousands of other families might have helped make it less lonely and scary.

 *****

I saw this on another blog today. I LOVE Etsy and this blogger has this announcement for her shop:

In honor and memory of all the children living and lost from CHD's, bekima knits' helping hearts will be donating 20% off every sale, now thru everyone's 'Heart Day' - February 14th.

Proceeds will go to Children's Heart Foundation and Bless Her Heart.
 

Feel free to copy and paste to help spread the word!

Shop HERE to help hearts...one hat at a time.

If you like that Etsy shop, go here to find the blog that coordinated with bekima knits to have a giveaway today!

Congenital Heart Defect Awareness Week 2011

*there's loss

I was recently writing about how I wasn't sure I wanted to hang out in the online blogging CHD world. At the time I wasn't even thinking about this -  the reality of CHDs is that they cause death. A baby with TOF died this week. He was less than one month old.

Blog after blog I checked had posts of sadness about the loss of Baby Ewan. The online CHD community is grieving today and it's hard to ignore.

To help you understand why some babies with TOF make it and some don't, Ewan's mother gives an excellent description of the range of severity the TOF diagnosis can have. See her October 5th post.

And then I saw this on a blog I've mentioned before. I don't know how to link to the October 3rd post individually so I included my favorite part here:

thump thump

This time, she wanted to sleep in my arms
on my chest
squishing on her binky in my ear
breathing on my neck
relaxing into my arms
It was quiet.
Just us.

And then I felt it.

Her heart beat.
My heart beat.
One on top of the other.
Beating at the same time.

Soon I didn’t know which thump was mine
and which one was hers.
and which one was Jaydens.

And I thought of his mom.
And heart moms.
And moms that lose their children.
And moms that watch their children lose.
And moms that watch their children win.

And soon I didn’t know which heart beat was mine
and which one was theirs.

Baby Ewan and poetry like what you see above are my new reasons to keep blogging about Will.

*there's a reality check

I was recently reading through blogs of other heart moms and found one that was different. This mom's child needed a heart transplant. We all know organ transplants are happening in the world but coming across a specific story like this was new to me. I have her permission to share this information.


Here is the story of her daughter receiving her new heart.


This one describes how they connected with the donor family.


This is the post where she encourages readers to become organ donors. 

If you haven't yet, do so right now.
That site has a donor card you can print and sign. Then tell your family about it.

What an amazing story. It puts my daily life into perspective.

I've made some changes to the format of this blog page. I have made it easier for people to find where I've talked about our experience with TOF. I was pondering getting all of Will's heart stuff out of my system soon and then not mentioning it again here. I don't want it to define him. I have been appreciative to other families that I've learned from but I didn't exactly want to live in the CHD world all the time. I want Will to be able to forget that he has a heart defect for months at a time...except for his annual cardiology appointments where he will show off his health and progress of course. It's important that he continue to go to those appointments every year. Mainly because he will have to give his permission for them to write papers about his unbelievable accomplishments and all that. He's going to amaze us and them. :)

Then I realized I want to keep reading these blogs. Its comforting to see them living their lives - whether or not they are mentioning their child's heart. Some of them are about kids just a little older than Will. I am going to want to see how active these other kids are as they grow, how the families talk to them about their CHD, etc. How is it fair that I want to take that from other heart families but not give? I think there are some people in my life that would prefer I never mention anything about Will's health again. But I decided it's more important that I stay connected and offer Will's story. There are babies not yet born whose families will hear that phrase tetralogy of fallot just like us, will think it sounds like gibberish just like me, and they will want to learn from us like we have from others.

Now go finalize your organ donor status. :)