Harper Grace, born 2014On Monday January 13, 2014 at 5:00pm the world welcomed a sweet baby girl Harper Grace. I could not believe this 7lb 10oz little peanut with her mommy's cheeky smile (she actually flashed while being weighed the first time) was finally here. It was love at first sight. The nurses and doctors were checking her over and they mentioned ever so slightly that they heard a murmur but that was not abnormal for newborns, so we enjoyed our baby girl without a worry. However, as the day of discharge approached the murmur needed further investigation, and they advised us to make an appointment at the University of Virginia Pediatric Cardiology unit. The pediatrician had given us a few different scenarios, but he didn't seem too concerned. We actually had to stay a few extra days due to an unexplained fever, but we were discharged on Friday to head to the Pediatric cardiologist. Once we arrived they did an EKG and ECHO and then we waited to meet with the cardiologist. We waited. It felt like years as all of our attention was on this new little miracle in our lives. Then the cardiologist entered our room, in his brightly colored shirt and kind smile, and let us know the diagnosis, TOF.
The world stopped turning, my heart stopped, and all I saw was the cardiologist and I heard his voice fading out. He let us know that this should have been detected at my 22 week ultrasound, unfortunately during that ultrasound the hole was read as a shadow. There was not anything that could be done to prevent it, there is not any current information of why this happened as there is not any congenital heart issues on either side. The next step was to wait and hope that she did not have an episode of TET spells/blue so that she could grow and get strong to have surgery by 4-6 months. This meant isolation from the general public until surgery to keep Harper Grace as healthy as possible.
Needless to say the winter was long and not enough summer days. Our outings consisted of doctors appointments and we looked forward to warm days for walks. With friends and family all doing research about where our best options, we found out that one of the top facilities in the country was in our backyard. The Children's Hospital of Philadelphia, where Dr. Spray, a world renowned pediatric cardiac surgeon, was our choice. We made our first visit in February to be evaluated and then given the date of May 22, 2014 for her surgery, pending of course that she didn't have any BLUE spells. This little fighter broke all odds. She kept growing and had strong numbers for her pulse ox levels which meant she would be less likely to have BLUE spells and her most recent weigh in was over 16 and 25 inches long, she holds her head up like a champ, rolls over, and her pulse ox 95-99%. Her cardiologist at UVA stated she was in perfect health, you would never know she has a "wrinkle" as my grandfather put it. Now flash forward to her week before surgery.
We arrived on May 15, 2014 to CHOP and did her pre-op work, another EKG, Echo, and the dreaded (for mom) blood draw. Gigi had to hold Harper Grace because mom couldn't handle it. She did great, a trooper. We met with Dr. Spray the next day and he went into detail about how the surgery will go. Dr. Spray had kind eyes and a very humble man for a world renowned surgeon, my heart felt as much at ease as possible that this man was going to take my baby girls heart in his hands and fix it with a team of specialists by his side. Thus giving Harper Grace the best chances possible for the best outcome. We even received a great detail of news that her pulmonary valve was a great size and he might be able to save it from needing a future surgery. This is great news, and we are hopeful that with this one surgery it will be the one and only, and that she will be able to go on to live a healthy, happy, long, life without restrictions... except body building. That's the only restriction successful TET patients have according to our doctors. I think she will be OK with that. Our happy lil peanut's adventure to being a MENDED HEART on May 21, 2014 at 6am. Dr. Spray is God's angel for us on earth. He mended Harper Grace's Heart.
Update: Harper Grace is approaching two and nothing is stopping her. She is still in the top percentile for growth, her development is on par for her age and you couldn't have a more happy, healthy, socialite. She loves life and life loves her. Her favorite things to do are running, dancing, swimming, and riding her motorcycle. She is the light of my world and I am so blessed that God granted the wish of a healthy baby girl. She went in for her post op 1 year appointment a few months ago at All Children's hospital in Sarasota, FL and her Pediatric Cardiologist said everything looked fantastic and that we should not even think of her as a Tetralogy of Fallot baby. The surgery did such a great job she looks good for the long haul and is hopeful that another surgery will not be needed. But as we know its all in God's hands and enjoyment of the day is all you can do! God bless all those that have a baby with a "wrinkle"I hope nothing more than peace, smiles, and health for your little one and your families.
Story by Harper Grace's mom, Cari Lea - Florida
Levi, born 2015
Julia, born 2008