Road Trip - Destination San Diego

On Sunday, we left for our first family vacation in a year, and the first trip with all four of us that wasn't for medical reasons.  It felt good to load up our girls and hit the road, knowing the fun we have ahead of us.  Zoe has been through so much, and been pretty sheltered when home, so I am excited to see her reaction to Legoland, SeaWorld and the San Diego Zoo.

The girls were fantastic on the 5 hour drive out.   The only hiccup on the drive was the California Highway Patrol's objection to Caleb at an excess speed.  Officer Gonzales quickly announced he was writing a ticket, but said he would cut us a break and write a ticket for doing 75 in a 70 mph zone.

Officer Gonzales laying down the law

After our unexpected stop, we were back on the road and made it to the hotel by 5.  At the check-in desk, the front desk employee wheeled out a trunk and told the girls they could pick a toy from the toy trunk.  Emerson picked a stuffed guinea pig and Zoe grabbed a magnifying glass, after which she proclaimed, "it's a mystery!"

Once we got to the room, the girls darted out on the deck and soaked up the view.  They quickly gobbled up the chocolate covered Oreos that were waiting for us.   We went to dinner at a restaurant that was overlooking the beach.  They sat us up against a window, so we could see the waves crashing as we ate.  After dinner we snuck out the back door and took some pictures. 

Even the beauty of the ocean couldn't tame Zoe's temper

Sister love

Since the girls need all the energy they can get for Legoland tomorrow, after a few pictures we headed back to the room.  When we got back, we were all surprised by the sweet treats waiting for the girls.

Emmy insisted they get the PJs on before having milk and cookies

The girls are having a great time, which means Caleb and I are too.  After our Legoland visit, we'll put some pictures up.

"Fantastic"

Yep, those words actually came out of Zoe's cardiologist's mouth today. I don't think I've ever heard him say "fantastic" in the last two years. She looks "fantastic!"

Zoe did wonderfully during her appointment. Well, except for that blood pressure cuff. She HATES it. She cooperated for her pulse ox test (89) and EKG, but we weren't lucky in getting a good BP reading because she just WASN'T having it.

We were really concerned since this was the face she gave me right before heading into the echo room. I asked her if she was going to cooperate and this is the face I got...

But, she did cooperate - thanks to Dora's Pirate Adventure (and a new beanie baby pound puppy, and some bubbles, and a lolly pop...) And now you wonder why she's such a "stinker"; she plays the game of Manipulation very well!

So, the bottom line of today's appointment is that Zoe's heart looks great. Her function is normal, her flow looks good, she has no leak in her functioning valve (the tricuspid valve) and Dr. Stock said her heart sounds "great!" Overall, we couldn't have received a better report. The thought is to continue with her current medication regimin and plan on her third open heart surgery (the Fontan) between age 3-4, perhaps we'll shoot for the Fall of 2013.

As we were driving home (after jumping up and down in the Phoenix Children's Hospital parking garage), I felt the guilt creeping in (yep, for those of you without chronically sick kiddos, that is normal). I felt guilty for being so happy and that Zoe is doing so well. I see way too much suffering and death and to be happy feels 'wrong' in a sense. But, I decided that I refuse to feel bad today and that I'm going to be happy, to be ecstatic over the wonderful news we received.

ZOE ROCKED IT TODAY and I'M SO HAPPY AND PROUD!

Thanks to all of you who texted, wrote messages and sent good thoughts and prayers up for us today. I felt the love!!!

And, if you haven't had enough Zoe, she'll be making another appearance on the local news on Monday night (KTVK-Channel 3). She's now not only raising awareness for Congenital Heart Defects, but doing some much-needed lobbying in Arizona. Really, she could be a liberal lobbying cardiologist in 20 years... only time will tell.

Insomnia

Two years ago tonight I couldn't sleep.

I was awake, 9 months pregnant and preparing to relocate to Philadelphia for what would be the most intense year of my life. For those of you that know me well (and I mean really well), intense and me are far from strangers.

I sat sitting on my bed, going over details in my head. What did we forget to pack? Will Emerson wonder why she isn't sleeping in her own bed? Will she behave on the 5.5 hour flight to Pennsylvania? And, the most gnawing thought of all... what if we return home without our baby?

Thank God everything fell into place the way in which it did. Zoe did come home and boy has she exceeded all of my hopes. On a daily basis, I see myself in her and my parents remind me that her behavior is "payback." Yes, I was feisty. Yes, I was a pain in the butt. No, I didn't listen to 90% of what my parents advised. I believe, in my heart, that those personality traits have heightened my strength and perserverance. I thank God that Zoe inherited those same traits.

So when she's climbing the barstools and onto the countertops when I run for a bathroom break...

or destroying the pantry...

or covering herself in Cetaphil...

I remind myself, "this is why she's still here with us" and smile.

Tonight, I have insomnia all over again.

Tomorrow Zoe will have her first echocardiogram since July of last year. I'm paranoid. I'm anxious. I'm terrified. But, I have to keep telling myself that this little "stinker" (as she now calls herself) is a fighter, regardless of what the echo tells us. She's destined to fly.

We've received many kind words, thoughts and prayers heading into tomorrow's testing and we very much appreciate them. We'll certainly let everyone know the results as soon as we're able.

Much love,
The Lihns

Fired Up. Yet Again.

After the Arizona House of Representatives passed HB 2036 yesterday, I felt inclined to write Gov. Brewer and express my concerns over this bill and the far-reaching negative effects it has on our state.

Via Facsimile: (602) 542-1381

The Honorable Janice K. Brewer
Arizona Governor
Executive Tower
1700 West Washington Street
Phoenix, AZ 85007

Re: Request to Veto HB 2036

Dear Gov. Brewer:

I’m writing to you today asking that you veto House Bill 2036 which precludes termination of pregnancy after 20 weeks gestation. My reasons for requesting your veto are based on personal experiences and to maintain a semblance of our state’s economic health. The significant implications in signing this bill, or allowing it to move forward, will have a detrimental effect on our state’s economy.

On a personal note, my daughter was diagnosed with a severe congenital heart defect (Hypoplastic Left Heart Syndrome or “half a heart”) at nearly 20 weeks gestation in 2010. At that time, our perinatologist advised us that immediately following birth, our daughter would require immediate open heart surgery to begin reconstruction of her heart. Altogether, she would require three open heart surgeries (at minimum) in order for her to survive. Hypoplastic Left Heart Syndrome (HLHS) occurs in 2 out of every 10,000 births and is generally diagnosed at or after a 20 week ultrasound; most congenital anomalies are diagnosed at Level II ultrasounds that occur subsequent to 20 weeks gestation. My husband and I were given three options: 1) to terminate the pregnancy ; 2) continue with the pregnancy and let our baby pass within the first few days of life; or, 3) opt for the risky three-staged open heart surgeries. While my husband and I chose to continue the pregnancy and elect the series of surgeries, we did consider termination given the quoted survival rates and extraordinary medical costs. If you allow HB 2036 to become law, you take away the option to terminate for families who are faced with such devastating news; instead they are left with no choice but to carry their baby to term knowing he or she will not survive. Such legislation is grossly inhumane.

From an economic perspective, congenital anomalies and birth defects cost the American public health system over 2.5 billion dollars each year. As many as one in 33 babies born in the United States has a birth defect, according to the Agency for Healthcare Research and Quality. By signing HB 2036, you will increase Arizona’s already burdened economic status. As you know, just days ago, KidsCare was reinstated after a significant lull due to a lack of funding. HB 2036 will drive KidsCare into the ground yet again, and potentially indefinitely. As an example, I’ve attached an abstract from 2011 regarding the inpatient costs and charges for surgical treatment of Hypoplastic Left Heart Syndrome. You can see that the costs are exorbitant and easily surpass the million dollar mark. My two year old daughter’s medical bills, to date, are approximately $2,000,000.00 and she’s not yet undergone her third open heart surgery.

Many children born with congenital anomalies are covered by AHCCCS, KidsCare, and/or ALTCS. By signing HB 2036, you will drive our Medicaid system into a dire situation. This bill will detrimentally impact Arizona’s healthcare and economic system.

For the past few years, you’ve signed the proclamation for “Congenital Heart Defect Awareness Week”. In your 2011 proclamation, a copy of which is enclosed for your reference, you state:

“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…”

That $449 million dollar figure will double if you sign HB 2036. Research nationwide shows a 50% termination of pregnancy rate for children diagnosed with critical congenital heart defects. While I did not, nor would I ever choose to terminate one of my unborn children, I do not feel that taking that option away from a parent who will face significant consequences (emotional, financial, physical, etc.) is appropriate – particularly when our state is not able to provide financial assistance to those same families once their child is born.

This bill has insurmountable gray areas that cannot be ignored. Please, for the sake of mothers and fathers in our state and our economic health, you must VETO HB 2036.

If you have any questions or would like to discuss my personal experiences further, please do not hesitate to contact me.

Sincerely,

Stacey L. Lihn

Weekend Fun

This past weekend we were living large.  Emmy learned to play t-ball at Itty Bitty Sports while daddy chased Zoe around the park.  Man, when Zoe gets angry, EVERYONE at the park knows it!  I got Emmy's first 'at bat' on video. 

Afterwards, we headed up north to Bumble Bee Ranch for HopeKids' annual event.  Last year, Emmy and I went solo.  This year, Daddy and Zoe joined us.  Thank goodness they did because I think we captured the best family photo yet!

(Don't mess with the Lihns!)

After pictures, which we intentionally did first, Emmy insisted on riding a horse.  Last year she was a little timid; this year she was a pro!

The girls played together and visited with fellow heart friends.  Zoe was thrilled that we "set her loose" to run around the ranch all afternoon.

After all of the running, Zoe sat down and blew us away.  She picked up my cheeseburger and started scarfing it down!
 

We had such a wonderful day and are so blessed to be a part of such an amazing organization - HopeKids.  They've given us so much joy in the past year and lots of memories to cherish!

Big Time Progress

There is much to celebrate in the Lihn house as of late.

In big-time news, Zoe graduated from physical therapy!  Yep, she's now age-appropriate in her development and her physical therapist feels that she'll only continue to improve and strengthen as she grows.  We're looking into orthotics from a potentially shorter left leg due to the femoral clot she suffered at three weeks of age, but other than that, her development is great! 

In July, we'll be trekking back to Philadelphia for Zoe to take part in the NeuroCardiac Care Program at CHOP.  It's a fairly new program (not offered west of the Mississippi) that takes several areas into account for children with critical congenital heart defects.  Specialists in cardiology, neurology, nutrition, speech and physical therapy will evaluate Zoe.  We're looking forward to her assessment and information that will only help us better prepare her for school.  We're pretty confident she'll get a two thumbs up, but we'd like to hear it from the experts' mouths.

As many of you know, Caleb had surgery on his Achilles a few weeks ago. He's been doing really well and his surgeon is impressed with his healing (shout out to Reiki...) I took a picture of his ankle after the wrap was removed at his last follow up appointment. It's pretty Frankenstein-ish. I told him I was going to post it and he thought it was too gross. I said, "What? We've put up photos of Zoe with her chest open- how is this any more insulting?"

I win, here you go...

He's now walking with a boot and was even cleared to ride a stationary bike today.  Woot!!!

And, I cannot end this post without wishing a Happy Birthday to Jacob Baker and the Affordable Care Act - you've both had a tremendous and profound impact on my life - and you were born on the EXACT SAME DAY! ♥ 

Here is Jacob - two years old and kicking HLHS butt everyday!

And here is the ACA - saving lives and offering hope.  (Don't miss Zoe's appearance!)

A Visit from Obama 2012

Word has spread, or should I say video has spread... about Obama 2012 coming to visit us in Arizona.  A few months ago I received a phone call from a woman working with Obama's campaign.  We talked for the next several days, at length, regarding Zoe and our family's reliance on the Affordable Care Act.

I shared with her several statistics that were utterly shocking to her.  The first, and most importantly, that Congenital Heart Defects occur in one out of every 100 live births.  Take that stat for whatever it means to you, but for Obama 2012, it means that 1 in 100 babies are born with a pre-existing condition... and a pricey one at that! 

After phone calls back and forth and some logistical planning, two members from Obama's team flew to Phoenix and spent a few days with us.  We shared our journey with Congenital Heart Defects, the enormous relief we felt knowing that the Affordable Care Act was signed just a few months before Zoe's birth and truly became friends with both Obama's producer and photographer.

Yes, I voted for Obama in 2008, and will again in November, but my purpose in filming our family's story was not politically motivated.  We agreed to film our story because we whole-heartedly believe (and know) that the Affordable Care Act will not only save Zoe's life, but the lives of thousands of children around the country with similar heart defects.  Our country desperately needs healthcare reform.  The misconceptions about the Act and who it helps and doesn't help has been a source of anxiety and frustration for me for two years now.  Quite simply put, if you're an American citizen, it will benefit you!

If you don't believe me, visit this 'calculator' and see for yourself!  http://www.barackobama.com/health-care?source=20120311-HP

Heck, I consider myself fairly well-versed on the Affordable Care Act and even I learned something new.  "By 2014, all insurance plans will cover maternity benefits—and your insurance company won't be able to charge you more than a man for the same policy."

Thank you Obama 2012 for allowing Zoe's voice to be heard throughout America.

If you've yet to see the video, you can view it here:

The girls enjoyed the experience just as much as Caleb and I.  I, of course, had to document the filming, since it was a once-in-a-lifetime opportunity.

And, one last picture that is important to share...

Get out and vote Obama in November - if not for yourself, do it for Zoe and her fellow heart warriors!  We need a President in office that understands the importance of caring for our children, our parents, our selves and our fellow American.