Heart Hero of the Month March 2023
Story by, ❤️Mom, Christina
February 23, 2022, at my 18-week ultrasound checkup was the day I found out my whole life would change. I went through so many emotions about how I was going to be able to be strong and capable of taking care of a life that was going to require special attention. All my dreams from that moment became a stand-still as I was so determined to go back to school to become a Registered Nurse. For the remainder of my pregnancy, I had to see a pediatric cardiologist at Children’s Hospital in New Orleans to monitor my baby’s heart. It was confirmed that my baby had Tricuspid Atresia w/D-TGA. The cardiologist at Children’s provided me and my significant with other all the information we were going to need to prepare for our daughter’s arrival as well as set us up with the heart monitoring program.
On July 7, 2022, Kennedy Edelyn Checo-Reyes was born at Tulane Lakeside Hospital in Metairie, LA. She was immediately transported to Children’s Hospital CICU so that she could get the proper care she needed. On this very day, Kennedy was also diagnosed with a TE-Fistula; a Butterfly Vertebrae at T5 and 13 ribs. Due to the Fistula, it put a delay on our plans to have the Norwood procedure because she needed to have this fixed asap and to recover from that. Following the Te fistula repair Kennedy needed PA bands to manage blood flow to get her by until she was big enough to handle major heart surgery. Two months after being in the CICU recovering from pleural effusion and two surgeries, Kennedy ended up needing a G-Tube. A G-Tube was needed due to her not being able to be breastfed or drink from a bottle. Three days later after having a G-tube placed, she caught a staph infection that prolonged our stay during our home trials.
September 29, 2022, we were finally released until she gained the appropriate weight to have surgery.
On October 31, 2022, we went for her weekly check-up to find out there were changes in her ultrasound. On that day it was decided she needed to have surgery soon, rather than wait for her to be 6 months. It was also decided that not only would she have the Norwood procedure, but she would also need the Glenn. Being at home was the best feeling ever even though it was for a short period of time. Kennedy was able to be herself and spend time with her 13-year-old big brother Craig. Craig is such a great big brother who is very understanding and helpful when it comes down to Kennedy.
As surgery approached Kennedy broke out in a sweat overnight on Nov 4, 2022. They admitted us to the hospital. Cath lab was scheduled for November 7th and heart surgery on November 9th. The surgery was a success after a long 8 hours. Recovery had a lot of ups and downs dealing with one occurrence of a seizure and multiple pleural effusions.
Pleural effusions are our biggest battle today. Doctors say Kennedy is a tough unique case because they are unsure why these effusions won’t stay away permanently. After her surgery, she was released on December 31, 2022. She was readmitted on January 5, 2023, following another release on February 1, 2023, and has been home ever since.
I’m writing this right now with so much love for Kennedy. She is my fighter, an inspiration for my everyday life! Every day she smiles and plays, and never fusses unless something is really wrong. We are currently in therapy to get her 100% to catch up on a few things missing in her milestone. I can’t wait to see how she will blossom as she grows.
Our follow-up cardiology appointment is in three weeks and will be closely monitored as she will be reintroduced to breastmilk and formula to see if these pleural effusions are gone. Currently, she is on a 50/50 formula of Similac and Tolerex as well as high-dose diuretics. A referral for consultation regarding Kennedy will be sent out for second opinions to other facilities that might have something to offer treatment for her care.
I pray that things will get better for our family, especially Kennedy. She deserves a break to be herself and to experience life outside of the hospital. It has been a tough 7 months not being able to work part-time or full-time. Her cardiologist says she is too high risk to go to a daycare or to have anyone outside of the home to care for her, so I have been struggling. This has been a life-changing experience, but it will be worth it in the end.
Her fight is my fight and for that, she will always be a Heart Hero! This concludes her story for now….