Monday, August 23, 2010

Our Story

A fellow heart mom created a special event for all of us - the "Every Heart Has a Story" event. It is a wonderful forum for heart moms to share our stories with each other and meet those with similar challenges, hopes and fears. For more details, click here.

And so, without further ado, our story goes a little something like this...

My husband, Caleb, and I live in Phoenix, Arizona. After 10 years of marriage, we had our first child, a daughter named Emerson Kennedy. We fell in love with her immediately and had no idea just how much a child would change our lives (in a good way!) We wanted to continue to grow our family. Five months after Emerson turned one, we learned that baby # 2 was on its way. We were so excited and the only thing on our minds was, "a boy or girl?" On December 9, 2009, at our level 2 ultrasound at 19 weeks gestation, we heard the devastating news - "something is wrong with the baby's heart." From that moment forward, we entered the CHD community as expecting parents to an HLHS child - an extremely challenging and frightening endeavor. How was our baby going to survive with only half a heart? What will her quality of life be like? Just a few of a million questions swirling around in our minds.

Our research took us to Philadelphia where we met Dr. Thomas Spray and the wonderful people at the Children's Hospital of Philadelphia (CHOP.) We knew they would be the ones to save our unborn child. Afterall, CHOP's motto is "HOPE LIVES HERE." We put our faith and trust in them. We packed up our lives for two months and relocated to Philadelphia.

On May 11, 2010, I gave birth to Zoe Madison in CHOP's Special Delivery Unit. I am one of the lucky ones who got to hold Zoe immediately after giving birth. We anticipted her first open heart surgery (the Norwood) would take place a few days later. As you know all too well, things don't always go as planned with our CHD kiddos. On May 12th, at 6:30 a.m., while in the recovery room, Caleb and I received a phone call from the on-call cardiologist. Due to pulmonary overcirculation, Zoe's surgery would take place that morning. Less than 15 hours after entering this world, Zoe underwent her first open heart surgery.

We met with Dr. Spray and held our baby girl for what may have been the last time. We waited, impatiently, for updates from the operating room. During the surgery, Zoe's innominate artery kinked, requiring a patching of her shunt/artery connection. She recovered quickly post-operatively. She attempted to yank out her vent (after one unsuccessful extubation) and managed to remove the NG tube on her own - never needing it again.

Zoe's anticipated discharge, just 2.5 weeks post Norwood, was complicated by the narrowing of her shunt at the patch site. Dr. Spray anticipated the possibility of a complication and ordered a cath prior to discharge. Thank God he did. Zoe's shunt/artery connection was severely narrowed - with little to no clinical signs. Two stents were placed during her catheterization. Unfortunately, Zoe developed two blood clots in her left leg post-cath. She underwent TPA therapy to attempt to clot bust; only slightly breaking up the clot.

When we were finally discharged, on June 2, 2010, Zoe's clots remained. We now had to give her Lovenox (anticoagulant) injections to keep her blood from clotting near the clot site and in her shunt.

After 59 days in Philadelphia, we returned to Arizona. We returned to our old house, but entered a new life - a CHD life.

And, so far, so good. Zoe is awaiting her Stage II/Glenn which is scheduled for September 14. As all of my fellow heart moms can relate, Zoe is our hero. Her strength amazes me. I am encouraged that "life after the Glenn" is wonderful, "almost normal" as one heart mom put it. I can't wait. I've never been a big fan of patience.

If you so desire, feel free to follow our family blog and check in on Zoe's progress as we approach our "almost normal" life.

Love to you all,
Stacey (Zoe's proud mommy)


  1. Stacey,
    Thank you for sharing Zoe's amazing story with CHD and linking to my blog event!

    Many prayers being sent your way for her upcoming surgery.

  2. Amazing story. I am now a follower and will be praying with you on the 14th.

  3. I am a new follower =) Will be praying for you all for Zoe's upcoming surgery! God bless!

  4. My son had only one open-heart surgery at 4 months to repair multiple VSDs and an ASD. My heart goes out to you and your family and I hope that one day all your daughter's surgeries will be a distant memory!