Meet Lucy

Child's Diagnosis: Tetralogy of Fallot (TOF), ASD

What’s one thing you wish you’d been told at the beginning of your journey?:

It's okay to be scared. but know that your heart warrior is one of the strongest people you will ever know.

Please share a little bit about your story:

Lucy was diagnosed with ToF at my 24 week anatomy rescan. A week later we learned she also had AVSD from the fetal cardiologist. Lucy would not cooperate for the multiple fetal ultrasounds, so the doctors did not have all of the information until she was born. After developing severe pre-eclampsia, Lucy was born at 34 weeks and 5 days. She was stable enough and transported to Children's Hospital. At 2 days old, Lucy was diagnosed with down syndrome. Lucy stayed inpatient for 2 months, the first 3 days in CICU, then 3 weeks in the NICU, and the rest of the time between the CICU again and the cardiac floor. Before being discharged Lucy received 2 stents in her RVOT to help with blood flow to her lungs. One of the ways she earned her the 2 stents was the scariest day of this mother's life. Lucy was in the NICU on Christmas Eve. Lucy started off the morning with a little de-sat into the 70's right at shift change. A couple hours later, she had a tet spell and her oxygen dropped into the 40's and then the 30's. That earned her a spot back in the CICU. They watched her for almost a week, and it didn't happen again. Then they decided to send her to the cardiac floor. The second night on the floor, she decided to drop into the 40's. This final time earned her a spot back into the CICU and the stents. Once we were able to leave, Lucy was discharged home on medicines, oxygen, and an NG tube. When Lucy came home, she was only taking 15mL by mouth with a total feed of 55mL every 3 hours in February 2022. By September, she was taking 90mL by mouth with a total feed of 110mL every 3 hours. On September 15, 2022, Lucy had her surgery to mend her heart. From kissing her before taking her back to surgery to kissing her after surgery was a total of 12 long hours. Currently, we are a week post-op and she is starting to act like her old self.