Sunday, May 29, 2011

A Miracle Year

Zoe hit a major milestone on May 11, 2011...her first birthday. Last year, we dared not to think of celebrating, not knowing if she'd be here with us. After experiencing a year of hospitals, stress, anxiety and lots of miracles and healing, we celebrated Zoe's first year of life.

In honor of her first birthday, we made a video honoring her strength, perseverance and constant inspiration. She makes us proud every day and gives us tremendous perspective.

Thursday, May 26, 2011

California Fun

We've had so much going on lately, that I've fallen behind on blog posts. We just celebrated the girls' birthday, which I will post about very, very soon. In the meantime, however, below are several pictures from our trip to California with Emmy.

First Stop: Disneyland!

After getting in the park, we rushed to get a head-start before the crowds arrived. Thankfully, it was a school day and the park remained pretty mellow all day long.

(Mom went straight-up old school - It's a Small World)

(Emmy riding the Carousel, for the 10th time)

(Caleb and Emmy planning our next attack)

We lucked out on our first day and met many, many familiar faces! As you can see from the timeline of photos, Emmy started off slow, but warmed up around Goofy.

(Emmy picked out her own pair of ears, and lollipop)

(Emmy preparing to fly with Dumbo at day's end)

Next Stop: California Adventure

(Caleb and Emmy playing carnival games)

Emmy pooped out and benefitted from a long nap on Day Two, allowing Caleb and I to take turns riding some grown-up rides. We left the park a little early to clean up for dinner with some wonderful friends.

Sisters By Heart Dinner

With a little foresight, we were able to plan a night with some very special mommas I've come to know and love this past year - all of us moms to HLHSers. Emerson and Bodie (one of Zoe's fellow heart warriors) became fast friends...

(Me, Amy, Sara and Nicole)

Last Stop: Universal Studios



The Beach: Santa Monica

Emmy's first visit to the beach wasn't as fun as I'd hoped. It was cool and breezy. Emmy was exhausted from the past few days, but we managed to get some cute pictures anyway.

Caleb and I are glad we took Emerson to Disneyland for her 3rd birthday. We had a great time and she loved the one-on-one attention, particularly given the past year. She even agreed to bring Zoe back next year.

Thursday, May 19, 2011

And So It Is

The call came in - that long distance 3-ring tone. For the past two weeks, I rushed to the phone thinking it's CHOP calling to schedule Zoe's MRI and Cath. After several false alarms, today I received the call.

And so it is. Zoe's MRI ("and cath, if necessary") are scheduled for July 8th with pre-testing on July 7th. Poor Zoes will have a full work-up: a check up with cardiology, an echo, ekg, chest x-rays and blood work. I'm already dreading the blood work! Zoe, like most heart kids, is not cooperative and her blood is thicker than heart healthy children - so blood draws are never easy.

The plan remains the same. If the MRI is reassuring and shows that her pulmonary arteries are decent-sized (prayers, please) then Zoe will not need a cath and we'll have a weekend of FUN in Philly. If she needs a cath and ballooning/stenting of her pulmonary artery(ies), Zoe will have an overnight stay at CHOP with discharge the following day - assuming no complications arise.

So now, we wait. As usual.

Over the next several weeks, leading up to July 8th, please keep Zoe in your thoughts and prayers for nothing but a positive outcome.

P.S. A Disney and Birthday blog soon to come...

Saturday, May 14, 2011

Today, We Remember

Today, we will celebrate the birth and life of our daughters, Zoe and Emerson.

Amidst that celebration, we will also be grieving the loss of a life taken all too soon.

Today, we remember our first CHD love.

Our love for Gwenyth Gumdrop.

Today, we ask that you say a prayer for a family dear to our hearts, the Carpenters, on this May 14th, the anniversary of the death of their sweet Gwenyth.

Today, We Remember.

"Ever has it been that love knows not its own depth until the hour of separation." -Kahlil Gibran

Thursday, May 12, 2011


So soon you ask?

Yes, so soon.

At 6:30 a.m. on May 12, 2010, the phone rang in my hospital room in the Special Delivery Unit - an extremely rude awakening after giving birth to a heart baby less than 12 hours earlier. The first thought that ran through my mind was, "she didn't make it through the night."

Caleb answered the phone. I listened intently to his tone and watched his facial expression for a hint of what was being uttered by the stranger on the other end. He hung up, looked at me stunned and said, "she's going to have surgery today."


We were told to expect surgery on Friday (three days after birth). Well, those of you who know Zoe, or any HLHS baby for that matter, know that the plan almost always changes. Zoe experienced some pulmonary overcirculation throughout the night and her cardiologist decided that it would be best to go forward as soon as possible. Oh, and Dr. Spray was available.

And so, 12 hours after giving birth to Zoe, Caleb and I were meeting with anesthesiologists and cardiothoracic surgical nurses and signing medical consents for Zoe to undergo her life-saving procedure. Shock does not even begin to describe my emotional state of affairs. The only real memories I have of that day are what I can recall when reading Caleb's blog posts from last year.

It is amazing to me that a newborn baby can endure the beating that her little body took at less than one day old. She is a true warrior.

At one year and one day old, we celebrate the new life that Dr. Spray granted for you. We celebrate all of the doctors and nurses who've brought you to this day. We are forever grateful for the opportunity to be this little fighter's Mommy and Daddy.

Zoe's Heart Hero Cape arrived in the mail this week. I thought perhaps my order got lost since it'd been over 4 months since I requested it. Obviously, the timing of its arrival couldn't be more perfect. Today, Zoe is crawling around the house, wearing her Hero Cape and letting HLHS know who's boss.

Emerson is insisting on playing "Super Heroes" all day. I'm game!

Wednesday, May 11, 2011

Zoe is ONE!

Today, my amazing, beautiful and courageous daughter, Zoe, turns one.

One year ago today, I was full of emotion. I could not wait to finally meet you - my little fighter. I was scared to death that I would lose you. Strangely, those are the same emotions I feel everyday - perhaps to a different degree. Each day, I see your personality developing and wonder just who you'll be. Each day, I fear the day that I might be forced to say goodbye.

You've transformed my life in a year. My eyes are wide open; I see and feel everything. In your short year of life, you've taught me about life and death. You are a true blessing and a gift to not only me, but hundreds.

To my miracle baby, I love you with all of my heart.

Happy Birthday, Zoe Madison!

(Emmy, as she awaits the call letting her know that her little sister has arrived - at Clark Park in Philadelphia.)

(Zoe, just seconds after birth.)

(Zoe, today - two open heart surgeries, two heart caths and counting. And always with a smile!)

Wednesday, May 4, 2011

Road Trip

Today began our road trip to Disneyland. After dropping Zoe off with Grandma and Grandpa, we headed out for a...ROAD TRIP!!!

After a few hours of driving we arrived at our hotel, but before we went in, Emmy tossed a coin into the fountain and made a wish.

Emmy was so excited to check out the hotel and our room...and even more excited to discover her own bunk bed.

After returning from dinner, but before bed, Emmy insisted on calling guest services to ask what time the shuttle departs for Disneyland in the morning.

Time for bed. Have to get up bright and early to get to Disneyland first thing in the morning. We miss you Zoes. Emmy said you could come next year.