Friday, May 17, 2013

Comrades in arms: Our Fontanning Buddies

I suppose I could have titled this post "Misery loves company," which would be every bit as accurate. but I wanted to convey a message of hope and positivity, because truly, with these kiddos, there is SO much hope!!! 

I get told often how people can't believe how amazing Bodie looks, that you'd never know everything he's been through unless I told you. I LOVE hearing that comment. But you have to know, Bodie is not alone. Far from it. We have LOTS of friends just like Bodie, who have been through more in their little lives than most people go through in a lifetime, and you would never know it! Many of them I know solely through the wonders of social media; but a few, I've been lucky enough to meet in person! I wanted to share some of our special friends with you - all of whom either had their Fontan already in the past couple of months, or are gearing up for it now. (Their Fontan dates are indicated under their names.)

These are our buddies. 

They are Bodie's fellow heart warriors. 

Their mothers are my comrades-in-arms.  

And these kids are awesome. 

So, when you're saying a prayer for Bodie this summer, make sure to include these little heroes as well! 

Austin, 2
March 4th
Austin's family was one of our very first Sisters by Heart care package recipients! He ROCKED his Fontan and set the standard for the rest of us! Please pray that he keeps setting that gold standard for us!

Caleb, 3
March 17
Caleb's a lot like Bodie - pretty much always on the move, getting into trouble NONSTOP. And his awesome mom parents a lot like I do - she lets him get down, dirty and germy (and let me tell ya, in the heart world, you might as well wear a Scarlet 'A' for letting your kid get germy!). ;-) I'm so hoping Bodie will follow in Caleb's footsteps and recover quickly from his Fontan!

Brodyn, 2
April 22nd
This cutie struggled a lot with fluid and rhythm issues post-Fontan, and had to head back to the cath lab for intervention - but is finally home! Please pray with us that he STAYS home and keeps the fluid off!

Jasiu, 2
April 22nd 
I can still remember when Jasiu's mom, Kathy, reached out to Sisters by Heart right when she got Jasiu's diagnosis! She's an accountant (you know, my peeps) and from the midwest (you know, my parents' peeps), so we totally hit it off! It's been so fun to see how well Jasiu has done! But, he did hit a bit of a stumbling block with the Fontan. He, like Brodyn, has had some issues with fluid post-Fontan and was just discharged a second time and still trying to get rid of the extra fluid. Please pray that it stays away this time!

Evan, 2
May 21st
I haven't met Evan personally, but I have spent time with his awesome mommy, Natasha, who is one of our Sisters by Heart Board members! Please pray that Evan rocks his Fontan this week and is back home and off to Disneyworld (his favorite place in the whole world!) quickly!

Ella, 3
June 13th
This adorable girlie was born not just with HLHS, but also with an Intact Atrial Septum - a very rough combination - she was given only a 20% chance of survival! And just look at her now! She has been having issues lately with her oxygen levels, so she's definitely looking at a higher-risk Fontan and needs all the extra prayers you can send her way, for sure!

Jacob, 3
July 16th
Jake's amazing mommy, Kathy, and I "met" when we were still pregnant with our little miracle boys - and have been great friends ever since! Although they're clear on the other side of the country, I have gotten to spend time with Kathy more than once, and finally met Jake when I was in Cincinnati in January! In addition to his HLHS, Jake has some airway issues - please pray that they don't affect his Fontan!

Colin, 4
July 16th
Also on July 16th, but in a different part of the country, we have Colin - who is basically Bodie's toeheaded twin! Both with a huge propensity for living and living LARGE (who says 1/2 a heart has to slow you down? Not these kids) - and both with adoring older sisters who are going to have a tough time with them being inpatient this summer. Please pray both for Colin and his older sister!

Tyler, 3 1/2
July 17th
Tyler is one of our local buds and we love spending time with him! We're bummed our surgical stays won't coincide (since he'll also be at CHLA) - please pray that he flies through his Fontan and is outta there before we get there on the 29th! 

Other summer kiddos
all of these kids will have having their Fontans as well this summer, but don't have dates yet:

Avery, 3 1/2
I met Avery's amazing mama, Anne Dee, at the NPC-QIC conference in Cincinnati in January. She is an awesome advocate for our HLHSers. And isn't Avery adorable??? Pray for a smooth Fontan for this little girlie!

Derrick, 4
Meet my future son-in-law. You think I'm kidding. I'm not. I love this kid. ADORABLE. We had a chance to meet him when we were in South Carolina last summer. Pray for him to be in and out and back in his new pool in no time!

Emma Kate, 4 1/2
How gorgeous is this girlie?!? Even from clear across the other side of the country, I have been following her for, well, forever and have always been amazed at how well she has done. She has been a constant source of inspiration for Bodie and me! Please pray that she continues her awesome streak and flies through her Fontan with flying colors! 

Grace, 4
Spitfire Grace is one of our local buds and we get to see her often at different events (and yet somehow, this was the most recent pic I could find of the kids - go figure!). We love Grace and her whole family. Like Bodie, she has a history of pulmonary hypertension, so her Fontan could be interesting. Pray that her lungs LOVE the new circulation, please!

Zoe, 3
Meet my future daughter-in-law. Seriously. Zoe is awesome. Her mommy, Stacey, is one of my closest friends and has been an enormous support for me in my journey. Just like her mommy, Zoe is an overachiever to the max and I'm sure will set new Fontan standards! Pray for a quick and successful Fontan for her as well, please!

There you have it. Bodie and all of his buddies "Fontanning it" this summer! Please pray for them all! 


  1. What an awesome post. Thanks Amy and we are keeping Bodie in our prayrers as well as all other Fonta Buddies this summer and through out the year. I think your alternative title would have been perfect as well but keeping positive is the best thing we can do, even if it seems like we have hit the lowest point, I learned over the last month, that it can always be worse so let's cherish and strive for the best. Thanks !

  2. So neat to see all these kiddos on their journey. I feel like I know them even though we've never met. Emma Kate will be having her Fontan this summer, too, but we are unsure of an exact date yet. I'll be sure and keep up with you all.
    Bethany :)