Friday, April 13, 2012

"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.

Thursday, April 12, 2012

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

Wednesday, April 11, 2012

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

Wednesday, April 4, 2012

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. 

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!