Life as a Heart Mom

In the late afternoon, on December 9, 2009, I heard the words that forever changed my life. “I have bad news for you today…there is something wrong with the baby’s heart.” The next several minutes, hours, days and weeks are quite a blur. Several phone calls to physicians, hours upon hours of internet research, cardiac consultations and lots of tears are all that I recall. As education and direction from physicians and surgeons emerged, so did a ray of sunshine. And Hope was Born.

Caleb and I knew we had to give Zoe the best chance at life. We packed up our lives for two months and traveled to Philadelphia to become new parents. Yes, we already had one adorable toddler, but she didn’t require this new type of parenting we’d soon learn – monitoring, wound care, medications, nursing, weekly doctor visits and enormous amounts of stress. We were becoming new parents to an infant born with only half a heart.

I gave birth to Zoe Madison on May 11, 2010 at 4:46 p.m. at the Children’s Hospital of Philadelphia. At that moment, another “Heart Mom” was born.

(Just minutes after Zoe joined us on the outside...)

What is a heart mom? Now that is a loaded question. Simply put, a heart mom is the mother of a child born with a congenital heart defect. But there is so much more to us than that. We are the strongest women in the world. We are grossly empathetic. We love unconditionally. We experience the greatest joys, the worst fears and heartbreaking sadness on an all-too-regular basis. We look out for each other and comfort each other at a moment’s notice. When one of us loses a child, we all lose a child. We remain acutely aware of minute changes in our child’s appearance and behavior. We trust and hope and pray. We are thankful for each day we spend with our children. We grieve the loss of normalcy – some of us longer than others. We are tireless supporters and advocates for our children. We fight for awareness. None of us know when our best day could be our worst day. We stare death in the face. We have good days and bad days. We get frustrated and angry. We are complex and complicated. We are fighters and survivors, just like our CHD warriors.

Immediately after giving birth to Zoe, I was allowed to hold her for several minutes – ten to be exact. Less than 15 hours later, Zoe underwent her first open heart surgery. We met with her surgeon pre-operatively and put all of our trust into one human being, Dr. Thomas Spray.

Zoe survived surgery and fought. She recovered rather quickly with only a few setbacks. After 59 days in Philadelphia, we boarded a plane and came home.

Since being home, we’ve settled in and have grown accustomed to our new norm. Our one and most challenging goal is to keep Zoe safe and healthy. We check her vitals (heart rate, pulse ox, and weight) every day and administer medication. We chart her intake and report to her cardiologist on a daily basis. All of this, we hope, will get Zoe to her next surgery.

As a heart mom, I fear the day I have to hand her over, once again, to Dr. Spray. That day is rapidly approaching. Another trip to Philadelphia. Another open heart surgery. Another set of known complications. Our journey is far from over. Nor are the lessons we have yet to learn.

Zoe has come so far. Surviving the several months in between Stage I and Stage II surgeries remains to be the most challenging for HLHS babies. As we come closer to this next chapter, please keep Zoe in your thoughts and prayers. After Zoe's second surgery, we will need to be extremely vigilant in our efforts to keep her healthy. Many infants who suffer illness post-Glenn require heart transplants. The September surgery date will occur as flu and RSV season is ramping up. Zoe will need to be a bubble baby once again. We look forward to the day when we can emerge from the house, together, as a family. We look forward to the day when all of you can meet and see for yourselves, our CHD warrior, Zoe Madison.

Since becoming a heart mom, I am inspired, and in some sense feel responsible for raising awareness of congenital heart defects.

Congenital heart defects (CHDs) are the #1 birth defect and are responsible for more deaths in the first year of life than any other birth defect. In the US alone, over 25,000 babies are born each year with a congenital heart defect, which translates to 1 out of every 115 to 150 births. (To put those numbers into perspective, only 1 in every 800 to 1,000 babies is born with Downs Syndrome.)

Funding for CHD awareness and research is abysmally low. For every dollar provided by the national medical funding arm of the American government, the National Institute of Health (NIH), only one penny is provided for pediatric research, and only a portion of that penny goes to support research on heart defects. With CHDs being the most common birth defect, I’m certain we can do better than a portion of one penny!

And so, in my first attempt in raising awareness and research funds, the Lihn family will participate in the inaugural Congenital Heart Walk of Phoenix, sponsored by the Children’s Heart Foundation and Adult Congenital Heart Association. Please consider joining “Team Zoe” on Sunday, November 7, 2010 at Tempe Diablo Stadium or lend support by making a donation for Team Zoe!

http://congenitalheartwalk.kintera.org/faf/home/default.asp?ievent=429992

Find our page by linking to "Top Fundraisers" on the right (Stacey Lihn) or to Walk with us, link to “Team Zoe” in the Team Rank box.

As always, thank you. We are able to continue this fight with your thoughts, prayers and continued support.

Raise Awareness, Spread Hope.

Love,
Stacey, Caleb, Emerson and Zoe