"Happy" Holidays

This past weekend we took the girls to a Christmas party hosted by a local heart family.  This family, whose eldest daughter will soon attend college, has opened up their home for the past 10 years to the heart community.  We've heard wonderful things about the party and with this being the first year Zoe is really healthy enough to go out, we jumped at the opportunity.

There was a ton to do - crafts, piles of leaves (this is a rarity in Arizona), cookie decorating tables, SNOW, Santa and more.  The girls had a blast... oh except for the Santa part...

I was thrilled to meet 8 year old William (HLHS) and his mom, Maigon.  When I asked William if I could take a picture of him and Zoe, he exclaimed "Sure!" and grabbed her like she was his little sister.  It was too cute. 

William also took the opportunity to teach Emmy and Zoe how to properly kick the soccer ball.

The girls had a great time - as did we.  It's always great spending time with other heart families and seeing all of our heart kids doing so well.  Emmy's mischevious spirit apparently comes out a little more when hanging with heart warriors - it must be contageous...

Seconds before Grace got a doused...

We hope all of our family and friends have a wonderful holiday season.  Embrace the spirit of the season!



"Happy" Holidays from the Lihns 



Enlightened

This is big.  Today is big. 

Two years ago I went to find out if my baby was a girl or a boy - a boy, I was convinced. 

Today marks two years since the doc in the glasses falling to the tip of his nose, tipped his head down, peered over his rims and gave me a very serious and solom look.  I couldn't stop what was coming next.  He may as well have just pulled my heart out and threw it on the floor that day.  The words he spoke sent me into a state of shock.  I was paralyzed.

Two years ago, a baby who was nameless was given what appeared to be a death sentence.  Few in the medical community gave us hope.  But, we searched for it.  And, we found it.  And, we're living it - enlightened.

Enlighten: to give intellectual or spiritual light to; instruct; impart knowledge to.

Many thanks to those who supported us from day one - regardless of what life or death decisions we were about to make.  My family, our friends and our cardiologist, John Stock.  I say "our" because I feel like he not only helped heal Zoe's heart, but our famly's as well.  He is all cardiologist and part psychologist.  He met with us for a long, long time on December 10th and delivered the facts of Hypoplastic Left Heart Syndrome.  Our options, our future.

Two years ago, I had no idea we'd be LIVING as fully as we are.  Zoe added a whole new dimension to our lives.  She's brought significant life lessons to many (including myself) who would never have the opportunity to be enlightened. 

It's amazing what one tiny little girl can do. 

Thank you for following Zoe's journey and allowing her to englighten and inspire you. 

Happy Holidays to all of our loved ones, near and far!

Zoe decorated, thanks to Emmy

Zoe Meets Zoe

Tonight while getting Zoe ready for bed, I introduced her to herself!  I think she was quite fond of herself...and the camera.

This week will be hectic for the Lihns.  Staple removal for Emmy, cardio appointment for me, RSV shots for Zoe and to finish up the week, Zoe's cardiology appointment.  We haven't seen Dr. Stock for 4 months, so I'll be slowly gaining anxiety momentum all week.  Keep us in your thoughts and prayers this week - we'll need the extra positive thoughts and energy.

Rough Rider

This weekend began with a nice surprise and a pretty mellow early Friday evening.

A package arrived from Icing Smiles, a wonderful non-profit organization who provided the girls with an amazing birthday cake earlier this year - pumpkin cookies and "just a little something to let you know your Icing Smiles family is thinking about you!"

A little swinging and laughs with Daddy.

A little Tebowing in the kitchen.

Followed by a nice bedtime story with Daddy.

Caleb and I were glad to get the girls down for bed so we could relax and watch a movie - something we've been attempting to do for the past two weekends. And then, the weekend took a turn for the worse...

We ended up in the Pediatric ER with Emerson...

(A little Fruit Ninja to pass the time)

She'd fallen out of bed after rolling over and smacked her head on the nightstand. Caleb ran in like "a hero" (reports Emmy) and told me she was fine, just shooken up. That's when I noticed the blood. We took Emmy into the bathroom to assess the damage and she had a nasty gash. My mom came over to watch Zoe and we headed to the ER.

Emmy was a trooper. I can't decide if all of the doctor's appointments and hospitalizations with Zoe helped or hurt the situation, but Emmy was tough as nails. Or Staples. She got three staples in her head to close the wound. No stranger to hospital beds, I crawled up with her and laid next to her while she got her staples inserted.

After the procedure, Emmy got to pick a toy out of the treasure chest (Tinkerbell wings), a Popsicle and a few stickers.

I'm happy to report that the remainder of the weekend was pretty mellow. You'd never know Emmy had staples in her noggin, she's still running around like a madwoman. Caleb summed it up nicely last night as he looked at me and exclaimed, "God, I'm the only sane one in this house!"

That's debatable, I think we're all a little off our rockers!

Hopefully we got our craziness out this weekend and can have a nice and relaxing Thanksgiving.

Walkin' and Rollin'

Last weekend, Team Zoe showed up big for the Congenital Heart Walk in Tempe, Arizona. There were about three times the amount of participants from last year's Inaugural walk and Team Zoe raised nearly $10,000 for Congenital Heart Defect/Disease education and research.

Last year, Zoe wasn't able to attend the walk since she was only a month post-op. This year was a very different story. Zoe not only showed up, but walked. And walked, and walked, and walked. She loved being outside and running around with her fellow heart families.

(Zoe and her HLHS bud, Owen)

Zoe met many of her fans whom she's not had the opportunity to meet previously. It was wonderful and a blessing to be able to "show her off"!

At the end of the walk, I got a picture of Emmy and Zoe crossing the finish line together.  For whatever reason, Emmy decided to run the last few meters.

And for those of you who couldn't make it in person but were cheering us on from afar, here are some pictures from the fun-filled morning.



(Zoe accepting her fundraising award)



 

Thank you, everyone, for making this year's walk BIGGER and BETTER than we could've hoped. We couldn't have done it without all of your love and support.

Crisis = Opportunity: Part II

Over the past 18 months, I've met many families faced with the struggles of congential heart defects.  Some of them live everyday in fear of losing their child; some of them live everyday greiving their child. 

One of the mothers I met after being thrust into this life is "Cora's Mom".  Many of you may know Cora and her mom, Kristine.  Cora was born on November 30, 2009.  She passed on December 6, 2009.  In her mother's arms.  While breastfeeding.  Cora's medical records revealed a heart murmur, something Kristine never knew until after her daugther's passing.  Cora went undiagnosed with a criticial congenital heart defect for one week and died as a result.

After Cora's passing, Kristine, along with a few fellow heart moms, began a valiant grassroots effort to save babies born with critical congential heart defects by way of pulse oximetry testing.  Since Zoe's diagnosis and birth, I've joined Kristine and 1 in 100 in their efforts to change the landscape of newborn screens.  I began advocating for the screening of all newborns for critical congenital heart defects here in my home state of Arizona.

Thus far, I've met with the Government Relations Director at the AZ American Heart Association, the Executive Director at the AZ American Academy of Pediatrics, had email conversations with the Director of the AZ Department of Health Services and, most recently, filmed a new's story on the culmination of these efforts over the past several months.

Part II of "Crisis = Opportunity" focuses on the amazing opportunity I've been afforded to join other grassroots advocates across the United States in saving lives.  A few states are currently screening all newborns, a few will begin mandatory screenings in January, and Arizona will follow suit in the near future.   

I hope that my passion and drive for change in the CHD community trickles on to Zoe - because she sure looks cute on TV!


 
 
Read the story or watch the link here.
 
Thank you, Kristine, AnnaMarie and my fellow advocates for educating, advocating and making a difference in the lives of future CHD families.

A Dose of Hope

Today was one of those days where I hold on to hope, a lot of it. As Zoe is growing - walking, talking, laughing and enjoying life - I always have that dreaded question in the back of my mind, "how will I live without her?" It's a morbid thought, but a harsh reality I've seen so many families face since Zoe entered our lives. Many times I find myself just staring at her, watching her live and breathe.

Today was one of those days that I stood in awe of my 18 month old daughter. She's given hope to families who didn't think it possible; she's taught me how to live better - and bigger; she's inspired hundreds to appreciate each day; she's given me an incredible family whom I never would've known.

Tonight, I watched a preview from an upcoming documentary. And cried. And cried some more.

Families with children born with Hypoplastic Left Heart Syndrome all have one thing in common. Hope. We live and breathe Hope. Most days, it's all we've got.

If any one person solidifies hope for our family, it's Jeni Busta.

Watch a preview from Jeni's upcoming documentary.  Be inspired. 

Feel the Love

For the past few months, we've been gearing up for the 2nd Annual Phoenix Congenital Heart Walk. Some wonderful friends and family stepped up in amazing ways, gave big allowing Team Zoe to reach (and potentially exceed) our fundraising goal for this year's walk. I wanted to share with you some of Zoe's supporters who took extra time and efforts in fundraising for Team Zoe.

Thank you, Tiffany, for requesting donations to Team Zoe in lieu of birthday presents (for your big 3-0)!

Thank you, Delany and Kendall for the tremendous and heartfelt support. These little girls saved their money and began fundraising efforts months ago. Check out the letter Delany wrote to her friends and family!

Thank you, Erin, for hosting a very creative fundraising event. For those of you in the Northwest Valley, please stop by for some Zumba and raffle this Saturday.

Tiffany, Delany, Kendall and Erin are just a few of the hundreds of Team Zoe supporters. We've been so blessed by the kindheartedness and generosity of others. We love and appreciate each and every one of you!

Unleashed!

For those of you not on Facebook (yes, there are a handful of you...), I couldn't preclude you from seeing these amazing pictures of Zoe - UNLEASHED at the park.

We learned a few things during this impromptu park stop.

1)  Zoe is NOT a fan of ducks - at least not when they are up close and personal.  She "quacked" at them from afar, but get up in her grill and she's terrified.

2)  Zoe apparently picked up on her mom's germ-a-phobia, which frankly, is fine by me! O.C.D. Away, Zoes!

3)  Zoe LOVES the slide.

4)  Zoe is quick on her feet!  All she wants to do now is walk "oweside".

Each day, I fall more and more in love with this little girl.  She's more than inspiring, more than a miracle.  It's hard to explain but I'm bursting at the seams with love and pride for my little Zoes.

Welcome to Fall

Well, we're getting close to Fall weather here in Phoenix. Last weekend, it cooled off enough for the Lihns to get outside and enjoy (or at least attempt to enjoy).

On Saturday we had a great time (minus the horrendous tantrum in front of the giraffe display) at the Phoenix Zoo. Apparently after breakfast with Dora and riding the carousel, there was no point in being at the zoo. Zoe had a blast exploring. She's becoming so expressive and loves being out of doors. She's making up for lost time!

(Zoe with her Dora backpack on!)

Dora was much taller than Caleb and I remembered from our encounter at Universal Studios earlier this year. I guess it's true, kids really do grow up fast!

On Sunday, we took the girls to Schnepf Farms. There was so much to do (too much really), and the girls took it all in.

Zoe quite enjoyed picking out her pumpkin. Oh, the expressions on this little girl's face - all within a matter of 5 seconds!

I intentionally dressed the girls in the same dress so I could compare just how different my littles are! Take a look-see!

(Emerson - 17 months, 2009)

(Zoe - 17 months, 2011)

And one family photo which of course the girls refused to look at the camera. They were mezmorized with the field of pumpkins!

And last but not least (if you've stuck around through this lengthy post), you're rewarded with one of the best pictures of Zoe to date!  Zoe, waiting for her slice of pie at Schnepf Farms...

Happy Fall!!!