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 almost fourteen years than anyone should in a lifetime.
Grace was born on June 2008 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 could immediately be 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 into the operating room for another open heart surgery, 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 was by fat 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 tough 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, eating normally 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 almost 14 years old and doing well. She is in the 8th 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 will be attending high school on a partial academic scholarship - something no one expected to be possible - in the fall along with her twin sister. We continue to be amazed by her and could not be more proud of the bright, kind and happy young lady she has become.
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!
If you think this page contains objectionable content, please inform the system administrator.