The Unexpected

"Expect the Unexpected" - I think that (a la Big Brother) is the new motto for all heart families I've come to know and love over the past year.

Another trip to Philadelphia this summer, let alone, this year, was certainly NOT expected.

Zoe's cardiologist in Philadelphia reviewed her latest echo and compared it to her previous echo and catheterization. She concurs that Zoe's heart function is low normal and believes that both PAs (the left pulmonary artery and right pulmonary artery) may be narrowed. To what degree is hard to tell with just an echo. She does not believe her aortic arch has changed since her last cath, and hence, nothing to be done at this point regarding her arch.

The game plan is this: schedule an MRI and catheterization in Philadelphia. Our best case scenario is that the MRI shows little to no change and/or no immediate intervention needed. If the measurements are good we will cancel the cath; if the measurements are worrisome, Zoe will undergo a cath with the intent of ballooning open her pulmonary artery/arteries. The cath attending will be in contact with Zoe's surgeon during the cath and they will devise a plan. If Dr. Spray believes the PAs are in decent shape, he will make the call to not proceed with intervention, as he can make any corrections during her next open heart surgery. If he is uncomfortable with the measurements taken during the cath, the cath attending will balloon open the PAs in hopes that they will hold. If not, a stent will be placed in one, or both, pulmonary arteries.

The MRI and cath will be scheduled back-to-back so that Zoe will undergo anesthesia only once.

We are awaiting a call from scheduling at CHOP. Zoe's cardio submitted the paperwork for testing in a "month or so."

The realization that we will be returning to Philadelphia has not yet set in. The realization that my baby needs additional, unexpected treatment is more than unnerving. Like always, we will take it day by day.

For now, we wait for a date to mark on the calendar.

I spoke to Zoe last night and told her we were going on a trip - a trip to visit her birthplace. I hope she grows to love Philadelphia as much as Caleb and I have. I pray that the feeling of HOPE overrides the fear we feel each time we return.

They say a positive attitude is muy importante in times like these. Zoe certainly keeps the positive train in gear!

Easter in Photos

A visit with the Greats



An egg hunt



An Easter brunch


And lots of play






Since Easter, we've been devising our plan for Zoe's upcoming MRI. It's been confirmed - Philadelphia concurs with Dr. Stock that an MRI is "useful." More to come on that front in a few days, as we're still wrapping our heads around it...

WWSD

An echo revealing a seemingly narrowed descending aortic arch, small left pulmonary artery and low-normal heart function; What Would Stock Do?

Order an MRI.

That is the long and short of today's cardiology appointment. No, not at all what Mom and Dad wanted (or frankly, expected) to hear. We left deflated. Clinically, Zoe looks great - BP good, sats good, pulses good. Under the microscope, however, something may be up with her little heart.


We've known, since interstage, that Zoe's descending aorta may be narrowing. There were signs. There still are, but it's hard to see on echo just how narrow her aorta is. We've known that her LPA is narrowed and hence, the hemi-Fontan instead of the Glenn. What I don't like, nor does Dr. Stock, is the "red flag" of those two issues, coupled with low-normal heart function.

So, we'll undergo more testing to see what, if anything, needs to be done at this point. If nothing else, we'll have good baseline measurements to keep an eye on the aorta and LPA.

So, how are we feeling? Not great.

We knew, as soon as Dr. Stock walked into the consult room that we weren't going to hear what we'd hoped for. Instead of starting off by saying, "everything looks great!" which is routine, he began asking lots of questions:

"Is she tiring during the day?" "Turning blue with activity?" "Have you noticed any puffiness in her face?" "Any excessive sweating?" All questions which I know are not good to hear at this point in the journey. Thankfully, we were able to answer each question with "No." I knew the bad news was coming next...

We went over Zoe's echo and concerns about her arch, LPA and function. Zoe's heart med, Enalapril, instead of being discontinued (which I thought was a definite possibility) was increased. Dr. Stock will send Zoe's echo and his consult report to CHOP for their read. I, of course, have already emailed Zoe's cardiologist in Philly to inform her of today's events.

And so, we're deflated. I came to the harsh reality today that this roller coaster ride will never end. As soon as you think life is feeling somewhat normal, you're reminded that it is not. And will never be; regardless of how the journey ends.

As we drove away from downtown Phoenix, I told Caleb I was disappointed and felt like crying. He calmly responded, "I know, but we just gotta ride the wave."

And so, I'll ride this wave and hope to heck it's a good surf.

The MRI will likely be scheduled in the next month - we are not in an emergent situation, which is good; the waiting is hard.

Where will Zoe undergo her testing? That is a question that I cannot answer just yet. An MRI is standard for most, but not for cardiac kids. A specialized pediatric cardiac anesthesiologist is needed for Zoe and so we owe her a pause in making this decision.

A cardiac cath was also mentioned today, but the thought of a less invasive MRI makes some sense; particularly if no intervention (ballooning the LPA and/or aorta) is necessary.

So, that's it. In a nutshell. Not quite the news I imagined myself delivering to Zoe's fans today. Please continue to keep us, particularly Zoes, in your thoughts and prayers.

We'll keep you posted as our journey unfolds.

P.S. Thanks to my fellow heart moms for their "echo tips." Zoe fully cooperated during her echo - watching Dora on the portable DVD, licking a pina colada lollipop, being fanned by dad and kicking back using mom as a lounger!

Birthday Fun

Since my birthday was so somber last year, I decided to celebrate for an entire week (and then some).

Last weekend, Caleb and I spent an evening at Camelback Inn sans kiddos. We had breakfast on the patio and spent the entire day at the spa.

This weekend, my parents took me out for lunch at El Pedrigal. It was a beautiful day and we snapped some great family photos.

(Mom's Birthday Ice Cream - Zoe's first!)

(Emmy appears chocolate wasted)

("Dangerous," says Emmy)

(Fun with Grandma and Papa)

As you can see, the Lihns are having a good time. It's going to be a great 2011, with lots of activities and excitement. The goal for the remainder of the year is to have fun and stress less :)

And the first hurdle in reaching that goal is Zoe's cardiology appointment on Friday. Send us lots of happy thoughts - 8:30 a.m. MST.

Crazy Times

The past week-plus has been crazy. I never realized that becoming more "normal" would create chaos. I thought once we were "normal," things would get easier.

Not so much.

Now, we're going out on the weekends and doing MORE - meaning less time at home to do chores. I figure that's just fine. We've been holed up in this house for nearly 9 months, so we'll take the chaos.

To add to the chaos, Zoe is mobile. She's everywhere. We're discovering what makes her happy - going outside (she goes and sits by the backdoor constantly), shoes (runs in the family) and bugging her big sister (not sure where she gets that from :)...




Just as life seems to be "normal," Zoe has another cardiology appointment. She'll undergo a full work-up on Friday with an echo, ekg, etc. Please be thinking and praying for Zoe, mommy and daddy as those days are ALWAYS stressful and filled with anxiety. At Zoe's last appointment, Dr. Stock stated that if her function looks good again on echo, she can come off Enalapril, meaning she'll be down to her reflux med and 1/2 a baby aspirin! Geez, I hope I didn't just jinx her.

Emmy has been a busy beaver. She and I had a blast at the HopeKids event last weekend. Unfortunately, dad had to stay home with Zoe because of a slight cold, but Emmy and I went all out anyway. We took silly photos and Emmy rode her first horse, named Chunky.



We've spent some time poolside as well, enjoying the weather before it gets too hot.


So, we're busy. Period.

I will update the blog after Zoe's cardiology appointment on Friday the 22nd. Until then, say your prayers for a cooperative Zoe and great results! We'll be keeping Zen and doing our yoga until then.


And this picture is just too cute not to share, kneepads and all...

Bringing Hope to Broken Hearts

Sisters by Heart is continuing its mission to inspire and support newly-diagnosed HLHS families.

With your help, we can reach more families and spread the word that a diagnosis of HLHS is not the end, but just the beginning of a life-changing and rewarding journey.

Our children, both survivors and angels, bring us HOPE for the future of HLHS. Please, share our message so that we may continue to reach out to those in need.

How Old Am I?

Ok, so it's my birthday today. According to my birth certificate, I'm 35.

Last year, on April 14, 2010, I turned 34. It sure seems like I've aged TEN years in the last 365 days!

I remember my birthday last year, like it was yesterday. We'd relocated to Philadelphia the day before - April 13th. We forgot to pack pajamas for Emerson. Among other things, I felt disorganized and lost. We were on a mission to give birth to Zoe and I think the realization of the move caught up to me on my birthday.

We drove to a local mall to buy pajamas for Emerson - after she'd slept in some impromptu pjs the night before - leggings and a long-sleeve shirt. Emerson fell asleep in the car and I sat in the parking lot with her while Caleb ran into the store. It was dead silent. I pulled out my phone and called to check my voicemails (I hadn't been answering my phone; I didn't feel like talking to anyone.)

My best friend, Brian, called and left my birthday song on my voicemail. Every year, for as long as I can remember, I can count on him to call and sing me Happy Birthday in his beautifully-trained voice. So, I'm sitting in the parking lot, listening to my birthday song, bawling my eyes out. How did I get here - to this point in my life that I'm in a strange place, 36 weeks pregnant, not knowing if my soon-to-be-born daughter would live or die?

Wow, what a day (or year for that matter). Many memories from Philadelphia are extremely vivid - some good, some bad. The only memory of my birthday, last year, is me crying in a parking lot outside of JC Penny (and that beautiful voice from my cell phone, which I actually still have saved and listen to on occasion.)

A lot has changed during the year of "34." My baby is ALIVE. And WELL. I am LUCKY. I've seen the other side of our coin and I don't want to go there (in my mind, or ever.)

And so, it is time to be happy and hopeful. It is time to celebrate!

I know this beautiful and valiant little girl is going to give me many more fine lines and wrinkles over the next several birthdays, but she's SO WORTH IT!

Happy Birthday to me - whatever age I may be . . .

Update on Will

Just a quick update...

Will Kohn is HOME!

His only job now is to chill and grow those pulmonary arteries.

(Will leaving the hospital...)

Fun in the Sun

This weekend was hot, like near-100 degree hot in Phoenix. We planned on going to the Mended Little Hearts of Phoenix annual picnic and meeting some new heart families and hanging out with good friends. Even though it was warm, we ventured out for a little while. Emmy kept cool with her new friend, Trey (d-TGA/vascular ring), and ate otter pops.

Zoe wasn't sure what the heck was going on. This picture pretty much sums it up.

(Where are we and who are all of these people?)

Although, a few familiar faces showed up - a few of our favorites - Owen (HLHS), his mom, Andrea, and Zoe's cardiologist, Dr. Stock.

Before it got too hot, we all sat down for a Mended Hearts photo for the new cardiac clinic at Phoenix Children's Hospital. Anyone want to play "Where's Zoes?"


After the picnic, Emmy insisted on spending more time outside. We hung out in the backyard and attempted to get some pictures of the girls. Someday, we'll accomplish a photo when both girls are actually looking at the camera. For now, this is what we get...

(I'm the only one who follows directions.
Although, Caleb may disagree...)

Caleb got some good shots of Emmy. Don't mess with her and her funky moves. This girl never tires of dancing.

After the long weekend, Zoe passed out in her swing. For whatever reason (separation anxiety, I surmise), Zoe HATES her crib these days. Oy vey, we're going to need a bigger swing!