Food from the Heart

New Food Pantry at Shands PICU

Families whose kids are patients in the pediatric intensive care unit at Shands Children's Hospital have a new source of FREE small meals and snacks -- Food from the Heart, a pantry of healthy snacks and small, quick meals, provided by Broken Hearts.

Food from the Heart snacks are available to any family staying in the PICU, regardless of diagnosis or financial need. The only requirement to request a trip to the pantry -- hunger and a desire or need to not leave the PICU floor! 

Families simply tell the Charge Nurse or the PICU Social Worker that they'd like to select a snack or small meal from the Food from the Heart Pantry.

Thank you, Fidelis Omicron chapter
(Tallahassee, Florida) of Alpha Delta Kappa,
for our first batch of goodies!

Our first batch of goodies came from the Fidelis Omicron chapter (Tallahassee, Florida) of Alpha Delta Kappa, an international honorary organization of women educators. My mother, Maryjane Thurston, a very-longtime member, graciously arranged this. I was able to tell the group about Broken Hearts and they brought items for our pantry. They were so generous, we were able to fill a large laundry basket! 

We are so excited to work with the Shands PICU to provide this new service to heart families and other families whose children are in the hospital. 

Now that we have the pantry -- we are accepting donations for it! We ask that items are nonperishable and nutritious (or at least mostly so). We want to provide families with food that will nourish them and boost their energy.

Suggested items for our
Food from the Heart pantry:

• Healthy Choice Fresh Mixers
• Whole Almonds (plain, individual packets)
• Raisins (individual packets)
• Granola Bars (Kashi, Nature Valley, Quaker)
• Dark Chocolate (individually wrapped)
• Pretzels (individual packets)
• Laughing Cow Cheese
• Low-sodium Soups (in microwaveable containers)
• Hot Teas and/or Cocoa
• Easy-Mac 
• Trail Mix (individual packets)
• Applesauce (original, no sugar-added)
• Fruit cups (such as Del Monte)
• Juice Boxes

For more information or to donate, contact:
Broken Hearts of Florida at brokenheartsinfo@brokenheartsofthebigbend.org.

Those Massey Boys

I stepped away from my desk for a few minutes. When I came back to my computer, this picture was up on my screen. I LOVE this photo. I love these boys. Kyle, Kasey and Kevin are the sweetest, craziest, funniest boys. They have big, generous, loving hearts. 

They're known around these parts as "The Massey Boys." Kyle, Kasey and Kevin are almost 17. All three were born with serious, life-threatening congenital heart defects. Their parents, Keith and Elaine, did not know before their triplets were born that they had tetralogy of Fallot, a group of four congenital heart defects -- pulmonary stenosis, overriding aorta, ventricular septal defect and right ventricular hypertrophy.

The Massey Triplets were born in South Georgia and airlifted to Shands Children's Hospital in Gainesville, Florida. Shands/Children's Miracle Network keeps their story, along with an adorable picture of the triplets as toddlers. The doctors at the University of Florida have written about them; I mean, they're identical triplets with nearly identical heart defects. How often does that happen anyway?

Imagine that. Imagine raising identical triplet boys who have nearly identical heart defects. Triple the worries. Triple the anxieties. Triple the surgeries. And? Triple the victories. Triple the accomplishments. Triple the laughter. Triple the joys.

Those Massey Boys fight, they pick on each other, they joke and they play pranks. They laugh and take care of each other. They're talkative and delightfully noisy. Keith and Elaine have raised rambunctious, goofy, thoughtful, loving kids. And they've done it with amazing grace, calm and composure. The boys -- the family -- are involved in their school, their church, their local community, and the congenital heart community. They are proud, confident young men. They're so good to our younger heart heroes.

Every time I see this photo, this is what I think about. Thank you, Kyle, Kevin and Kasey, for being you. Thank you, Keith and Elaine, for sharing them with us.

McKenzie's Lesson: Make the Most of Every Moment

By Jennifer Bailey 

 

Three years ago we were blessed with the best gift of all. We were given a beautiful little girl. She weighed 7 pounds, 11 ounces and was 21 inches long. Feb. 25 is McKenzie’s 3rd birthday and even though she is not here to celebrate, we are still celebrating her life and the time we had with her.

We are so happy to have had 25 months with her. She smiled and was happy more than you could imagine and dealt with every medical issue like it didn’t even bother her, playing and smiling through them all.

She loved her birthday parties, which we held on the 25th of every month. She loved seeing the people come see her and especially the balloons! McKenzie loved balloons! She loved to play with them and hit them and listen to the sound they made.

As we celebrate her 3rd birthday we ask you all to take a moment and think of her. Think of something you remember about her -- her smile, her big eyes, anything, even if it is just knowing her through her pictures and following her story. Her story has touched so many lives and we ask you all today to remember her story.

Remember her fight and her lessons she taught all of us: Make the most out of every day you have, remember we are only guaranteed this moment. Nothing is for sure for the future, so make the most out of every moment you do have.

Congenital Heart Disease Books -- SWIM: A Memoir of Survival

By Karen Thurston Chavez

I confess: when I first opened up SWIM: A Memoir of Survival, Bill Coon's self-published journal about his heart and kidney transplants, I was skeptical. 

But then. Well, damn.

Bill’s memoir is raw, stark, brutal and stunning. His story is remarkable, mind-blowing and incredibly inspiring. 

Today, it seems like everyone is described as heroic, inspirational, courageous, a true wonder. Bill really is.

He was born in 1989 with hypoplastic left heart syndrome (HLHS) – the left half of his heart was severely underdeveloped. Back then, the survival rate for babies with HLHS was near zero.

Some babies (even back then) had the option of undergoing a three-stage surgical repair (Norwood procedure almost immediately after birth; Glenn procedure at 3 to 6 months of age; and the Fontan procedure at 3 to 5 years of age). But Bill was too sick. His only chance of survival was a heart transplant. The same day his parents were considering taking him off life support, a heart that matched became available.

When Bill had his heart transplant at 3 weeks old in May 1989, he was only the fourth infant to have a transplant in the Midwest, and only the eighth baby in the nation to undergo a heart transplant. Except for his first 21 days of life, Bill has never lived with his own heart.

In the world of congenital heart disease, Bill is a major piece of history, of victory.

I don’t have any first-hand, personal experience with transplants. Through my work with Broken Hearts, though, I have come to know many adults and children who are transplant survivors. I’ve watched families wait days for the right match, and watched as others waited weeks, months, a year. A family I know left the hospital without their teenage daughter; she died eight months into her rocky, painful and courageous wait.

No one I know has ever painted the wait for transplant a fun, pain-free picture. But neither have they illustrated it as darkly or as deeply as Bill’s portrait.

The book’s opening summarizes Bill’s childhood.

“I lived a pretty sheltered childhood up until I was 5 years old,” Bill says. His transplant medications made his immune system weak. “I have no memories as a kid of ever leaving my house at all.”

But Bill had three cousins and his younger and older siblings as playmates, and he describes his childhood as “colorful, carefree and filled with ignorant bliss.”

Life was good … until his sophomore year of college. He began experiencing wrenching pains in his abdomen, struggled to breathe and was exhausted most of the time. Finally, on June 7, 2009, he couldn’t ignore his symptoms any longer and his mother took him to the emergency room.

“My life of good fortune and ignorant bliss had come to an abrupt end,” Bill says. “I didn’t know it then but my journey had just begun. I was about to enter the darkest period of my life; a period in which I experience a great deal of pain, heartache, depression, anger and sorrow.”

And that’s where his story really begins. 

This is not a book Bill sat down afterward and wrote, rewrote, polished and sanitized. It’s his personal journal, written along the way, in the moment. Moments when he was grateful, angry, bitter, happy, determined, sad, willful, groggy, drugged -- and that might cover just one day. 

Bill’s depictions are gripping and painful, and they're often laugh-out-loud funny. No matter his mood or condition, his feelings and thoughts are compelling. 

If you want to know Bill's story, and you do, you'll have to read his book.

Learn more and connect with Bill Coon:

• His book is on Amazon. 
• Great story, featuring Bill.
• Find Bill on Facebook.
• Twitter @thebillcoon.

This one's for you, Steve!

Steve Catoe
The Funky Heart

As Congenital Heart Defect Awareness Week (Feb. 7-14) gets off to roaring start, we're missing more than ever, one of our most influential, level-headed, just-the-facts-and-get-them-straight-please, beloved congenital heart advocates, Steve Catoe, affectionately known as The Funky Heart.

Among his countless posts that inspired and educated us, Steve also loved taking songs and rewriting their lyrics to include something about congenital heart disease. One of his last renditions was "South Bound and Down," about attending a HeartWalk in Atlanta. He wrote a number of others, including "Saving Grace," "The Way It Is," and "CHD in the USA." He used names of songs or lines from lyrics in his headlines or to lead off his blog posts.

In Steve’s spirit and to remember him this special week, we’ve taken the popular Christmas song, “It’s the Most Wonderful Time of the Year,” (here's the tune) and done something Steve might have done this week — rewritten the lyrics for CHD Awareness Week!

Here’s to you, Steve!

(To the tune of “It’s the Most Wonderful Time of the Year” by Andy Williams)

It’s the most wonderful week of the year.

With our kids boist’risly yelling,

And everyone telling you,

“Just be a dear,

“And spread CHD stories all the year.”

It’s the most – most vital week of them all

With those CHD messages and advocate meetings

When friends are on call

It’s the most-most vital week of them all.

There’ll be parties for vic’tries,

Lighting candles for memories, and

Telling our stories on shows

There’ll be scary heart stories

And tales of our glories of

Triumphs we’ve made as we go.

It's the most wonderful week of the year

There’ll be reasons for sharing

Our hearts we’ll be baring

For our loved ones so dear

It's the most – most heard week of the year!

It’s the most wonderful week of the year.

With our kids boist’risly yelling,

And everyone telling you,

“Just be a dear,

“And spread CHD stories all the year.”

Congenital Heart Disease

It’s the Most Wonderful Time of the Year!

To Raise Awareness of Congenital Heart Defects/Disease

So many great congenital-heart-defect awareness-raising things are happening here in Tallahassee this week and next week!

Tonight at 11 p.m. — immediately following Barbara Walter’s special, “A Matter of Life and Death,” at 10 p.m. on your local ABC channel — one of Broken Hearts’ very own, Ramsey Brown, will be featured on a segment our local ABC affiliate, WTXL.

Ramsey a few days post transplant.
Who looks that great after transplant?
Ramsey does!

Ramsey will share her story about growing up with congenital heart disease and her recent heart transplant at Shands at the University of Florida.

On Sunday, WTXL will interview Broken Hearts about its upcoming Open House on Tuesday, Feb. 8. Join us for our Open House and learn more about congenital heart disease, available resources for families and about Broken Hearts! Since its inception in June 2006, Broken Hearts has grown from its two founding families to more than 150 families across Florida, South Georgia and a few spots across North America. (Come over to Facebook and LIKE us!)

What events do you have going on during this Most Wonderful Time of the Year?! Tell us about them in the comments section below.

You know, as excited as we are about all that’s going on, we are missing more than ever one of our most influential congenital heart advocates, Steve Catoe — our Funky Heart. In Steve’s spirit and in his honor, we’ve taken the popular Christmas song, “It’s the Most Wonderful Time of the Year,” (I’m sending you to a neat video, featuring the original song.) and done something Steve used to love doing — rewriting the lyrics to make them CHD/heart-related!

Here’s to you, Steve!

(To the tune of “It’s the Most Wonderful Time of the Year” by Andy Williams)

It’s the most wonderful week of the year.

With our kids boist’risly yelling,

And everyone telling you,

“Just be a dear,

“And spread CHD stories all the year.”

It’s the most – most vital week of them all

With those CHD messages and advocate meetings

When friends are on call

It’s the most-most vital week of them all.

There’ll be parties for vic’tries,

Lighting candles for memories, and

Telling our stories on shows

There’ll be scary heart stories

And tales of our glories of

Triumphs we’ve made as we go.

It's the most wonderful week of the year

There’ll be reasons for sharing

Our hearts we’ll be baring

For our loved ones so dear

It's the most – most heard week of the year!

It’s the most wonderful week of the year.

With our kids boist’risly yelling,

And everyone telling you,

“Just be a dear,

“And spread CHD stories all the year.”

A Cure for Heart Defects

Before his unexpected death on Nov. 29, Adventures of a Funky Heart author Steve Catoe wrote about making a plan to cure heart defects. As we close out 2010 and open 2011, I can't think of a sweeter wish, a better challenge, a greater goal. Here's a link over to Steve's blog.

Here's to a successful, productive and Happy New Year!