Team Amazing Grace - In honor of a very Amazing little girl!
Thank you for visiting my fundraising page for the Congenital Heart Walk. Raising funds for CHD research is critically important to all Heart Warriors and Heart Angels, and personally very meaningful to me. I walk each year in honor of my daughter, "Amazing Grace" who has endured more in her elevn and a half years, than anyone should in a lifetime.
Grace was born on 6/12/08 along with her twin sister, Abigail. The difference between Grace & Abby is Grace was born with Hypoplastic Left Heart Syndrome. Because we knew about Grace's CHD before they were born, the twins were delivered at Columbia Presbyterian's Morgan Stanley Children's Hospital ("MSCHONY") in Manhattan so that she was immediately with the cardiac team that would take care of her. She had her first open heart surgery, the Norwood on June 19, 2008. After a rough go, she had to go back in to the operating room for another open heart surgey, more specifically, a Norwood revision on July 27, 2008. After the second surgery, she recovered beautifully and left the hospital on August 12, 2008. She spent 8 1/2 weeks in the NICU.
On November 18, 2008 Grace went back to OR and had her Glenn. This by far, was the "easiest" surgery for us. She recovered amazingly fast and came home six days later and was home in time for her first Thanksgiving.
Over the first year of her life, Grace received many services, and thrived as an infant. Thankfully she met all of her milestones in a timely manner and was never too far behind her twin sister!
On May 10, 2011, Grace had her Fontan procedure. This was quite possibly the scariest day ever. She ended up on bypass for 5 1/2 hours and we had no idea what the outcome would be. Immediately out of the OR, Grace's cardiologist pointed out to us that she was now "pink". We were amazed at how obvious it was when looking at her little toes and fingers. No more "blue baby"! Grace had a rough road to recovery after the Fontan. She spent over a week in the PICU and scared us a few times. She was moved to the cardiac floor and spent another 2 weeks there before having all tubes and lines removed, resuming normal eating and being allowed to go home.
Since her last surgery in 2011, Grace has not only had follow up visits with her cardiology team at MSCHONY, but she has also become a particpant in the "Single Ventricle Survivorship Program" at the Children's Hospital of Philadelphia ("CHOP"). We visited them last in the summer of 2019 and the doctors were pleased with her progress. That's always a great thing to hear as a parent of a kid with a CHD.
Grace is now 12 years old and doing well. She is in the 7th grade and is doing very well in middle school, not only academically but also athletically and socially. All of these were areas in which we were told might present a probelm for her. Thankfully she continues to prove all of those assumptions wrong. Grace has become quite the golfer and will be competing in her first junior league this Spring. She will also be playing volleyball for her school along with her twin sister, Abby. In addition to athletics, Grace loves art and music. She is back to playing the piano and loves to design and make things on her Cricut machine!
It's hard to believe that all of her surgeries were so long ago. The memories are still so vivid in this mommy's mind! As we approach the annual CHD walk, I wanted to re-share my little girl's story. CHD's are not an "illness" that can be cured with medicine or surgeries. They are a lifelong conditions that require a lifetime of doctor visits, medicines, looming procedures and surgeires and so much more.
Grace truly is an "Amazing" kid!! CHD babies are strong little fighters, and awareness needs to continue to be spread! They truly are little heroes!
Please help us to fund CHD research by making a donation to my personal or team fundraising page. Together we can make a life-saving difference!
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