Ethan's Run 2011...

I am so happy that we did this event again this year. It was amazing. We were up and loaded in the car by 7 am and headed to the race. Rusty, Rhonda and a bunch of friends ran the 10k, and we even knew a couple (crazies) people doing the 1/2 Marathon. So many friends of ours came out that day to support us, and the cause, and I am so so so glad. I got to reconnect with other Heart Mom's I met last year, and meet a few new ones. And I learned even more about the support community available for CHD kids as they get older. (Like Braden qualifies to go to a summer camp on Coronado Island for free, cool huh?) Here goes picture overload.

Heading to the event

 The boys met Clifford

 Brenner trying to stay warm.

 This is Heidi, Ethan's Mom. She is amazing. This event raised $10,000 fo CHD families here in AZ.

 Rusty with some of our neighbors and friends Rhonda and Andrea, who all ran the 10k

 Me and one of my closest friends Ami

 Me and fellow Heart Mom (to Angel Jake) Elizabeth. She maes the softest blankets for CHD kids, I have her button on my sidebar.

 More friends who came to run the 10k or just to run the fun run to support us! Steph, Me, Ami and Sheri

 Rusty and Dave waiting for Rusty to start his run.

 Ami and Sean ran the 10k in honor of their nephew Angel Tate.

 The Farnsworth's brought their kids to come support Braden. So nice. Bethea's kids came too!

 These little guys we met at the Zoo. Lincoln has TGA and his brother's heart is fine. Such cute boys. Insisted on walking the whole way. Good job to their Mom and Dad for keeping up with em!

Gabrielle with the boys at the kids zone.

 Team Braden before the Fun Run Started -
Pops, Jill, Ryan, Gabrielle, Nana S, Noni, Me, Jaci, Berk, Braden and Brenner

 Rusty getting into his pace for the 10k. Proud Dad to a CHD Warrior!

 Aunt Rhonda tossing her jacket to the crowd. Gotta love me an action shot.

 Braden running the fun run.

 Rhonda survived the 10k!

Brenner had to fuel up after his walk.

 Braden met another DORV TGA kid, Will. His family lives in our same neighborhood. Small CHD world. (And that is flames painted on B's face fyi)

 Team Braden

Next year I want to make shirts for everyone who comes to walk with us. It was so fun seeing all the different teams. I love that we stood out in our green shirts. Most were in red or white. Plus it made spotting our runners very easy! 

Life Right Now...

The boys are at such fun and different stages, that I had to write some of their funny quirks down before I forget them. And since I have a million pictures from Ethan's Run to post, and Blogger is saying I am out of space, you get this post until I buy more storage. Enjoy.

Brenner @18 months.

• He will come tell you "nigh nigh, baba" when he is tired
• He has to stick his finger in the bottle or sippie cup before you put the lid on to make sure what it is. 
• He says "all done!" or "I'n done" as soon as the car is put in park. Every single time. 
• He will come and tell me "I poop" and smack his diaper. Cracks me up- guess I need to think about potty training. 
• He is in LOVE with Elmo, and calls him "Mel-moh" thankfully his big brothers are willing to watch it in the car, so he is quiet on the rides. 
• Everything is a 'dog' to him. Birds, cats, Zebras= you name it, it is a "Dod!" 
• He loves to chase the flocks of "dods" from our lawn.
• Will, every single time, run directly into the middle of the road when we head out to play. And then turn and head down the center laughing. We don't think it's so funny, Needless to say, he doesn't get to play out front much. 
• He loves to close the microwave door. 

Berkley @ 4 1/2 years

• HAS to be the leader on our family bike rides.
• Has to be the first one out of the car at preschool, or anywhere else.
• Refuses to learn to buckle himself.
• Has to have me lay with him at bed time -even if it is for only a minute
• He can almost say his prayers all by himself, but when he repeats after you he does it in a sign song voice
• Nearly anything sung by him is at FULL volume and to the tune of Book of Mormon Stories.
• Has had Zero cavities, and would have perfect teeth, aside from the one dead one, yuck. 
• Is insistent that when he gets bigger HE will be "B1".
• Tells us we can't nibble on him because "if you eat me I won't be in the family"

Braden @8 1/2 years

• Has decided it is just to far to walk home from school and calls everyday for a ride (which he doesn't get)
• If he wakes up in a good mood it will be a great day, if not, hold on to your hats.
• He is amazing at school, loves his teacher and loves reading with me for AR.
• Is finally not biting his nails to the quick anymore.
• Is very particular about eating anything green, or with hints of green, like diced things or flakes.
• Is so easy to read when he is lying. Like it's pathetic how bad he lies.
• Will empty the dishwasher without being asked.
• Likes to put the big garages away.

Current things I never thought I would hear myself say before I had kids...

• If you are gonna wrestle, do it on the lawn.
• Take that sucker out of your mouth and give it back to your brother.
• Don't act like a girl.
• Text me when you get there (B1 has a phone- don't mock me, it is so handy, and Rusty works for AT&T so...)
• Stop changing your passwords without telling me, I can't get into Webkinz.
• Let's go work on a merit badge.
• Who ate the last of my Frosted Mini Wheat's?
• No, you cannot download an App.
• Who has my iPhone?
• Did you flush? (asked about 12 times a day!!!)

Team Braden...

Tomorrow is the big race day for Ethan's Run. We are so excited. It's like seeing a bunch of old friends, with stories no one but you understand. I finished up all 15 Team Braden shirts last week, and we will proudly be sporting the green shirts. FYI, they are green since that is Braden's favorite color.  I actually have one more to make tonight, Rusty decided he wants to run his 10k in a dry fit shirt, so I get to make him a second Heart Dad shirt. It's okay, he's totally worth it.

Berk's 

 Brenner's

 Braden's- I laughed trying to fit his whole diagnosis on his shirt, it was pretty funny. 

 The Back

I know you got a sneak of the others, but here is our family's shirts.  I don't think you can tell in the photo, but my heart has glitter on it, cause I can, cause I made them and cause I'm the HeartMom.

(I think I will have to do a tutorial on how to make these, since all it takes is a Cricut, freezer paper, and iron and paint. Really so simple- if you're not doing a million)

Hope to see you there, if not I'll post pictures from it soon. One heart family that won't be there is the Simmons. I have Owen's button on my blog. He is another brave heart warrior who is actually at Stanford, where Braden went, and underwent surgery yesterday. He is doing amazing. Jump over to his blog and give his family some love.

CHD Awareness and an Anniversary...

February 7-14th is CHD Awareness Week. I'm sure if you know me and my little Braden, then you know what a CHD is. But if not, here's a little info on it...

8 years ago today, we were in Palo Alto, CA at Stanford waiting for Braden to come out of his 1st Open Heart surgery. 

Nearly one in every 125 babies is born with a CHD. It is the #1 birth defect in America. This year alone, close to 40,000 babies will be born with a CHD.


Hugging goodbye and handing your little baby to a nurse if one part of being a HeartMom I wish no one had to experience. 

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined


Harder yet, was the sight on him after nearly 11 hours in the OR. Puffy, swollen and hooked up to so many machines and medicines. 

Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome
4-10% born with CHD have Atrioventricular Septal Defects *
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries *
14-16% born with CHD have Ventricular Septal Defects *
 Braden had 4 of them. His defect, we were told was 1 in 1,000,000 among CHD kids


Braden about a week post op with our hero and surgeon Dr. Frank Hanley

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.

This is...a CHD.

**Written by Stephanie Husted (fellow heart mom) 

And thanks to Andrea (Owen's Mom), I basically copied her CHD post ;)

For me it' was about finding joy in the journey, leaning on family for support and relying heavily on your faith. It's the tender mercies like finally being able to hold him again after he was extubated on Valentine's Day '03

 It's the rarest of smiles-saved for his Daddy on his Birthday. 

 It's being able to walk out of the hospital a few weeks after you enter it, with hopes of a bright future for a little one who has already endured too much. 

I think sometimes it is easy to focus on the sad, negative part of having a child with a CHD. But I truthfully believe we were given Braden to bring our extended family together, make Rusty and I fiercely protective parents, and it grew our testimony in Christ to a level I never knew existed. 

Braden buddy, I love you. I am so proud of you and that I get to be your Mom.  You are so smart. You get to play sports, and you love to read. You are very close to not just aunts, uncles and cousins but your 4 grandparents and great grandparents too. You are loved and prayed for by people all over the world.

Happy 8th Heart Anniversary

You can read more of Braden's story here.

I Wish I Had 4 Arms...

Because you see, for the last two weeks, I have battled all three kids being sick, with a husband out of town and I have been in the middle of a huge project. I need more arms. Well, and more hours in the day would be nice too. You see when you are dealing with a toddler getting over the flu and currently cutting molars, it is pretty hard to get anything else done. It's been one of those weeks where I literally use the bathroom with him on my lap. Yep, it's been a fun one.

Add in two older brothers who stayed home from school quite a bit this last two weeks, and well, with fun things like this going on, you can see why I haven't had time to blog...

(the toy box is he funnest place to play, but only if you empty everything out first.)

(yeah, not exactly how I had that photo arrangement set up...)

So, when he goes to sleep I have been working on shirts for this year's Ethan's Run. We have about 15 people running with us this year. Should be fun. Please register, it is such a good cause. The more active I get in the Heart Community, the more I realize just how lucky we are to have Braden. It is also fun for these parents to see what a healthy, thriving CHD kid looks like. Most of the kids I follow are under 3. SO Braden is an old survivor.  I got it in my head to make them myself, so with a lot of time, a Cricut machine, freezer paper and paint, they are nearly done.  I jut have to finish up the backs on a few of em, my own included.

 Braden's shirt took 10 times longer than any others, his dang CHD is so long to spell out!

The backs of some of the shirts, I customized them to each person wearing  them. I need to take ones of our family ones all together, cause Brenner's little one is so dang cute.

I am really excited about this year's CHD Awareness week, so I will be posting more about it once that kicks off on the 7th. And we are also in the middle of Rusty's little brother Ryan's Eagle Scout project -making the cutest hats for newborns to give out at the hospital.  His goal is to have 100 by the end of the month. And not that I am an overachiever or anything, but I have done 32 myself in the last two weeks...