It's March Already?!

Seriously, where has the time gone? 

The girls are growing up way too fast.  Emmy will be four in May and Zoe is turning TWO!  Our lives are truly incredible - which relates to both the ups and downs of our lives.

Zoe is doing amazingly well.  Her physical therapist is very pleased with her progress.  She ran after Emmy yesterday, the first time I've seen her "run."  Her next cardiology visit is in a month's time - April 13 - and I'm holding my breath as this will be her first echo since July of last year.  No pressure!

Even though it's cold/flu season, we've been able to take the girls out for some fun.  They love the Phoenix Zoo and we even let Zoe ride the carousel.  Pretty sure some of the parents were wondering who the classic OCD parents were wiping down every square inch of the porcelean elephant Zoe was about to mount. 

The girls love being outside together and enjoying being sisters.  I'm so blessed by these two.

Since Emmy's been pent up for so long, we enrolled her in ballet classes.  She loves to "plia and straight" and run around on her tippy-toes like a princess.  During her last class, family was allowed to attend.  As you can see, Zoe had no trouble catching on and wanted to join in on the fun.

And one last picture of Zoe at the zoo.  I'm pretty sure she's looking back at me saying, "Yeah, I can take that Komodo Dragon!"  Given all that Zoe's endured in the past 23 months, I wouldn't be surprised if she wrestled him into submission...

 (Zoe v. Komodo...)

Remembering Travis

A year ago today, we lost one of the brighest eyes and strongest men this planet knew.  This man was a mere 16-months old but had endured more pain and suffering and joy than any man I know. 

Meet Travis Gary DiCarlo.

Travis passed away following open heart surgery.  Even though Trav's mom is one of my dearest friends, I was stunned to read a line from her blog this morning:

"I gave up my last chance to hold my baby so that his organs could help someone else."

As a heart parent, we tout how significant organ donation is.  As a human being, we should all read Travis' mom's words over and over and over again.  She GAVE UP her last chance to hold her son so that the placement of his life support (ECMO) would remain in tact and his organs not be compromised for someone else's child.  I cannot even comprehend the magnitude of that statement. When it comes to children with congenital heart defects passing, which unfortunately I am no stranger to, my mind simply freezes.  It's paralyzed.  It's a defense mechanism for me.  So much so, that I cannot even continue with this train of thought...

For Travis' 'angelversary', all of us at Sisters by Heart created an event to celebrate Travis' life and the impact he had on our world.  We engaged the heart community and family and friends to help us send red balloons with rememberance tags into the sky across the country.

A few of the Rememberance Tags with one of the sweetest faces I've ever seen....

And our emotional balloon release for Travis...

(Travis' spirit surrounding Zoe during our photo shoot)

(Zoe releasing her balloon)

To visit or participate in the event "Balloons for Travis" and see photos from across the country, visit http://tinyurl.com/balloonsfortravis.
Take a moment and cherish your loved one's today.  Hug them and let them know you love them.  Life is too short... all we have is the present moment.

Arizona is stepping up...

Even though my political views may differ vastly from many politicians in Arizona, I have to say that Governor Brewer stepped up and supported something I hold with the utmost importance.

Several weeks ago, I wrote the Governor asking her to acknowledge the prevalence and impact that Congenital Heart Defects have on Arizona families.  Much to my delight, I received a proclamation in the mail a few days ago.

This week, starting tomorrow (February 7th through February 14th) has been proclaimed Congenital Heart Defect Awareness Week.
 

The text of the proclamation is simple, yet significant:

"WHEREAS, congenital heart defects are the most frequently occurring birth defects and the leading cause of birth defect related deaths worldwide; and

WHEREAS, over a million families across America are facing the challenges and hardships of raising children with congenital heart defects; and

WHEREAS, every year 40,000 babies are born in the United States with congenital heart defects; and

WHEREAS, some congenital heart defects are not diagnosed until months or years after birth, causing many cases of sudden cardiac death in young athletes who have not been diagnosed with congenital heart conditions; and

WHEREAS, in 2010, there were 2,783 hospital admissions in Arizona of infants with congenital heart disorders; and their hospital charges amounted to $449 million; and

WHEREAS, despite these statistics, newborns and young athletes are not routinely screened for congenital heart defects, with a disproportionately small amount of funding available for congenital heart defect research, parent/patient educational services and support; and

WHEREAS, Congenital Heart Defect Awareness Week provides an opportunity for families whose lives have been affected by congenital heart defects to celebrate life and to remember loved ones lost, to honor dedicated health professionals, and to meet others and know they are not alone; and

WHEREAS, the establishment of Congenital Heart Defect Awareness Week will also provide the opportunity to share experience and information with the public and the media, in order to raise public awareness about congenital heart defects.

NOW, THEREFORE, I, Janice K. Brewer, Governor of the State of Arizona, do hereby proclaim February 7-14, 2012

* CONGENITAL HEART DEFECT AWARENESS WEEK*

and encourage all citizens to increase awareness, education and services for congenital heart defects, which each year affect thousands of babies in Arizona."

And, for my Congenital Heart Defect "baby", who gives me new purpose and meaning...

I love you Zoe Madison and will fight the most stubborn of politicians so your voice can be heard!!!

Zoe, at the beginning of her battle with Hypoplastic Left Heart Syndrome

Zoe, today, half a heart and living well!

Sunsets

This past week we've seen some beautiful sunsets.  Zoe loves when I spot one out the back window, she knows she's gonna get to go "outsiieeeeddee!"

She certainly doesn't hide her excitement!

And a few more, just because she's so darned cute - and the sunsets rock!

I cannot stand her cuteness!

Crazy Days

It's been far too long since I posted... My apologies.
All is wonderful in the land of Lihn.  We're busy beavers - traveling, filming (yes, more to come on that later), living and working. 

We took Emerson to the Polar Express this winter and she LOVED the fresh snow!

Sledding at Northern Arizona University

The holidays involved some sick little girls and our New Year was spent up north at my parent's cabin.  A three day weekend away in the pines felt just right - and Zoe had no issues with the hightened elevation.

Between work, nonprofit adventures and family (in no particular order!), I've been beyond swamped - hence the month-long hiatus.

Zoe is not due to cardiology until April and we're hoping that appointment will give us good foresight for her final staged reconstruction, the Fontan (intracardiac, fenestrated lateral tunnel for those in the know).  It's hard to believe that Zoe is 17 months post-op already.  When the doctors told us that "Post-Glenn" was a time to relax, breathe and enjoy, they weren't joking.  It's been wonderful; we're so blessed to have a fairly uncomplicated post-hemi fontan journey.

Looking ahead is scary... so I won't.  At least not now, not today.

Emmy began ballet this past weekend.  She surprised me by being a great student.  I had no baseline to compare to, because she's been reclusive since Zoe's birth (not by choice).  She raised her hand, answered questions, followed Miss Suzie's directions and participated with all the little ballerinas.  Although, after just one 30 minute ballet class, I'm convinced she's built more like a soccer player than a ballerina. 

Showing off her new moves

As cold and flu season is beginning to hit hard, we'll likely be staying close to home for the next month or two.  We've already begun entertaining ourselves in the house - Dad mimicks a pretty great roller coaster via Costco Baby Wipes.

Until next time...

Live, laugh and love well,
The Lihns

"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