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...

It's a Problem Really...

(my attempt at a Valentine's Day banner- it still needs ribbon!)

Have I mentioned before that I have a thing for faux cupcakes? I just love those little suckers. And truth be told, faux dessert food in general, makes me smile.  But what started with a few (ie 3) cupcakes I found at the Phoenix Children's gift shop, of all places (and yes, even if I am confined to a hospital for three straight weeks with a sick baby I can still find a way to shop), has snowballed in the last 8 years... I have an entire display of glass candies in my kitchen at Christmas time, and my cupcakes even spread into these adorable spider web ones for Halloween. But no holiday has more of my favorite little devils than Valentine's Day. I even caught a shot with my second favorite obsession, maybe they'll get their own post too.

My name is Caryn, and I am a faux cupcake-aholic.

Shrek the Musical!!!

We got to take the boys to the opening night of Shrek the Musical at Gammage last week.  It was fun! Berk didn't quite understand the concept that it wasn't the movies, but quickly caught on.

Waiting to go in, of course opening night they raised the curtain late!

Braden & I

Rusty & Berk

Ok, so it's like the movie, it had some good songs into, but not any that made me think "I wanna buy the soundtrack." But the guy that played Lord Farquaad was so awesome. He was hilarious! And could you imagine doing the whole show on your knees?

Oh and of course Gingy was there to with his classic lines. 

The main characters had amazing voices, and I am still trying to figure out how they did the costume changes on Fiona- seriously, one minute she's all girlie, the next she's green and Shrek-y! I don't get it and I was WATCHING closely! 

But I think my hands down favorite scenes involved the dragon! This was the only photo I could find, and it did NOT do it justice. This costume involved atleast 6 men to make it fly and talk. It was beautiful! And the voice of the singer was so powerful. I was so glad at the end they brought her out (since she wasn't actually on stage singing) so we could see who she was! 

Once again, thanks to Rusty for winning all these awesome tickets! We had a blast, even if you did have to hold Berk on your lap the whole time, and even after intermission when he fell asleep...

For All My Techie Friends...

I've been wanting to write a post about some of my favorite apps and games for the iPhone as well as list some of my favorite sites for saving money. So, while I do not claim to be a techie myself, I am married to one, the sister in law of another and a little sister to one more. So, I have picked up a few things here and there...

Let's begin.  Now, if you are thinking about stopping reading because you don't have an iPhone, read on anyway, these apps are available on Droid and Blackberry too. Plus they are super stinkin fun!

Caryn's Top 5 Favorite Apps

1. HeyTell- this basically turns your device into a walkie talkie. You add your contacts, and push the record button and say a message. Short or long, but if you need to have a dialogue then might as well call! I like to use this app in the car, in place of text messaging. You tap, talk and wait for the reply. Usually our conversations go something like this: Me "When are you coming home, the boys are killing me!" Rusty "I'm on my way, be there soon."  Me "Well hurry, oh and pick up the dry cleaning!"

See, good fun! Oh, and for even added excitement I like to sign off with a very official "breaker breaker one-niner" or the occasional "10-4" Try it! And add me! It has come in handy so often!

2. Tango- if you have the 4G iPhone than you don't really need this app, especially if you have the Skype app, and because of FaceTime, but what it does for other devices is allows you to video chat on a 3G network! Super cool! My kids love using it to talk to their Auntie in Utah.  Once you load it, anyone in your contacts with the app will automatically load in!

3. Words with Friends. Basically a modern version of scrabble. One tip, play more than one game at a time, it makes it way funner. Add me, carynbeck  --'nuff said! And just for the record, I think I have won 3 games out of 500, so feel free to play me if you need a self esteem booster!

4. PocketFrogs- Seriously, 90% of my apps are games, most of them for the kids, but this one is allllllllll me. Basically, you collect, breed and grow your frog collection. This is a nice game because it is easy. Berk loves to play it for me. And it is one that you can leave for days at a time and not worry about things dying.  I have some pretty frogs, and I don't like to brag (cough) but I am ranked in the top 5% of all players. {I'm patting myself on the back}

                                                                       (Aren't they cute!)

5.  Oh man, when I tried to think of my 5th favorite app, I got so distracted that I nearly didn't finish this post, so I promise to do another app post someday!

Oh, and by the way, I have a thing about paying for apps, so these are all free FYI!

Now to the websites...

Caryn's Top 5 Favorite Websites

1. Retail Me Not . Please raise your hand and repeat the following "I promise to never shop online without first checking retailmenot.com for coupon codes."  You may put your hand down.  I kept wanting to tell people about this at Christmas time, as you know, we do nearly 90% of our Christmas shopping online (see next website) and this saves me nearly every time I checkout of my online shopping cart.  Try it, you'll like it. More like love it.  You're welcome.

2. Amazon- I don't even need to expound more. What's not to love, but really I want to tell you about Amazon Mom's. If you are a Mom, caregiver or other (aunt, babysitter etc) than see about signing up! It is free and you qualify for Amazon Prime- which means free 2 day shipping. It's a little like Christmas every time I use it...

3. All Things Thrifty. I mean the name says it all. This girl has the best ideas, for cheap. I have mentioned it before in the post about redoing my tables. But lately, this site has me wanting to ask for power tools for Valentine's Day!

4- Oh crud, I did it again. While zooming through my google reader for more of my favorites, I got sucked into the black hole that is craft blogs... So, they too will be another post on another day! 

Enjoy!

Christmas 2010!!!

We had a great week leading up to Christmas. Rusty generally takes the last two weeks of the year off and it is a fun time to spend together and get a lot of stuff done. That said, I have been too busy playing to blog, so here is a recap of Christmas!

Christmas Eve games and dinner at the Beck's house. We played a fun candy bar game,which I snagged my favs and then sat back to let everyone else play. Brenner stole a candy early on and walked around looking oh so proud of himself.  We exchange gifts with the Solomons cousins, and those are the gifts we open on Christmas Eve, as well as our jammies!

After we got back, and changed into our jammies, Nana & Grandpa R came to watch us get ready for Santa to come. We did Brownies for Santa instead of cookies, cause we wanted him to get a variety. I love our stockings that Rusty's Nana makes us, they stretch and are long and can hold a whole lotta loot!

The big boys woke up around 7 and were willing to wait for Brenner to wake up! Shocker! They dashed down the stairs Highlights from Santa were a Razor drift scooter for B1, a plasma car for B2, and a basketball hoop for B3. Then they got from us a few fun things. Like Braden got new snowboarding boots, Berk got his own quad helmet and Brenner got a Cozy Coop police car, that he LOVED.

 This is how Rusty spent most of the morning, pulling gifts out from the tree- we had to put them all way back so Brenner wouldn't get em!

Rusty got me a Kindle! I don't think he realized how much I would love it, or how many books I can read in a week... Good thing there are a ton of free books available, so he won't go broke too fast! I also got a steam cleaner for my wood floors. It is so cool, it doesn't use anything but water and it leaves the floors clean and sanitized! Rusty got a bunch of tools, and a new razor --so remember the Christmas Eve beard?? It was soon gone ;)

One of the best things about Arizona is that the kids can play outside with their new toys right away! It was actually chilly this year, but that didn't stop us. The rest of Christmas morning we relaxed, watched Toy Story 3 and went to eat a quick breakfast with Becks. I picked out the men's superman jammies this year, little did I know just how much they would LOVE them! We busted out Just Dance 2 and had a fun time.

That afternoon a few of us headed to see the  newest Narnia. I liked it a lot, and it made me realize I never saw the second one! Oops! I hope you all had a good Christmas!