Every birth story is different and special in its own way. Little miss Olivia Mae, who was a planned C-section, decided to come a day before she was planned. On June 4, 2019, she was born at exactly 5p.m. and had our hearts from the first minute she was born. She was born 9 pounds, 2 ounces and 21 inches.
That evening, we decided to send Olivia to the nursery in hopes to get some rest. Unfortunately, around 9-10p.m. the nurse came back and said Olivia had turned bluish and her O2 saturations had dipped. We were so grateful she was in the nursery for the nurse to be able to catch this. After multiple tests, the doctor came in and told us Olivia had a transposition of the great arteries with ventricular septal defect (VSD) and needed to have emergency surgery, as well as open heart surgery in the near future.
That morning, medical transportation brought Olivia to Syracuse for her initial surgery at one day old to have a balloon atrial septostomy. Bryan was able to follow her up and be with her as I was still in the hospital (which I left later that day). She did well with this surgery and it allowed her blood to mix so she was getting oxygen to her body until she was able to get the “big” surgery.
Olivia was in the hospital for about two weeks, stable after her first surgery. This was a difficult waiting period as she was on medications that made her shake and appear uncomfortable and we were unable to hold her. This time was emotionally challenging as we never had a definite surgery date and we kept getting our hopes up it may be the next day. We understood that the doctor had a lot of babies under his care and some more life threatening than Olivia, who was stable at the time.
Finally, it was Olivia’s turn. This was something we had been eagerly waiting for but also something incredibly scary and daunting. Olivia had her arterial switch operation on June 17, 2019. The hospital was wonderful in keeping us updated but it was still the longest eight hours of our lives. The next couple of days were also very difficult. We had to see her being intubated and in pain post-surgery. We just wanted to be able to pick her up and give her snuggles.
Olivia was a superstar after the surgery. Each day another tube was removed and she was able to go home about one week after her surgery. Her little brother, Noah, was able to come and meet her and he was excited to meet his sister with a “special heart.” We can’t say enough about the family support, friend support, staff in both hospitals, and the Ronald McDonald house who helped with housing along the way.
Olivia is now a healthy and happy 5-year-old girl. She is in kindergarten, currently is playing soccer, and plans to play lacrosse in the spring. She loves playing with her siblings, Noah and Madalynn, and she always says she wants to be a doctor when she grows up. She is a very smart, funny and caring girl. She follows up with cardiology once a year for an echocardiogram to see how her heart is developing with her surgery. So far, everything has looked great and her VSD has closed. We are hopeful this was a “one and done” surgery for her, but she will continue to be monitored for her lifetime for any complications that may arise.
We are thrilled to have Olivia be an honoree for the American Heart Association. It is incredible how many babies are born perfectly with no issues, but it is also quite surprising how common congenital heart defects are. We as a family always count our blessings with how far medical technology and research has come, because if she were born 50 years ago, she would not have survived. We are excited to have the opportunity to advocate for expanding knowledge and research resulting in improved care and outcomes for anyone affected by a heart condition. We recognize and appreciate the support organizations like this (AHA) provide to the medical field in order for kids like Olivia to get the best care possible.