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Lillian Grace Finn was born on April 14, 2021 as a full term infant, uncomplicated pregnancy and delivery, APGAR scores of 9 and 10 and was discharged as a perfectly healthy newborn baby. As we settled in to life as a family of 5, Lily as the picture of perfection. She was nursing every 3 hours, sleeping between, and so content. On April 23rd, we had a few non-ideal nursing sessions, poor latching, sleepy type issues. I tried all the things I knew how to do as a well experience nursing mama. After a few more non-ideal sessions, I called the pediatrician, mind you it was a Friday afternoon. The pediatrician advised to observe for dehydration and call the 24-hour line if we had any further issues. We were advised to avoid the ER due to COVID risks. After a few more hours, we took her to a pediatric urgent care clinic to get some professional eyes on her. The doctor there found it strange she wasn't nursing but told us the baby she examined it healthy, normal, completely fine. She sent us home to try skin to skin again, syringe pedialyte for hydration, and call pediatrician if problem persists. ER is unadvised for a 9 day old baby due to COVID risks. We went home, we did the skin to skin for hours, no change. She had completely stopped nursing by this point and would spit out any milk or pedialyte I syringed in to her mouth. We called the 24-hour pediatrician line to talk through our options. The doctor advised us to come in to their Saturday clinic at 8am for an exam. I explained we did not feel comfortable waiting that long and we didn't feel safe putting her to bed. She advised that "if we really couldn't wait" our only remaining option was the ER. I loaded up my breast pump and Lily and prepared for a long night in the ER where they would likely diagnose a tongue tie (even though she had already been assessed) and dehydration. Lily and I arrived at the ER at midnight. I was so anxious about the full waiting room of big kids. My main priority was keeping Lily protected and covered. I remember looking in on her in her carseat and thinking "She doesn't look okay, I should alert someone". That was right about the time they called us in to triage. Once in the room, I took Lily out of her carseat and handed her to the nurse while explaining our issues. Nurse Charlotte had extensive NICU experience, she calmy took Lily off the scale and informed me we were going to run, keep up. I had no idea what was happening but knew it wasn't good. She called everyone to meet her in triage. Not but a few minutes after entering the triage room, Lily's heart stopped and the team started administering CPR. The entire room was trying to figure out what was happening. I was stating off every detail I knew about our daughter, and it didn't feel like much. Even her name felt foreign because she was only 9 days old.
During this time, Sean was arranging for his sister and brother in law to come to our house to stay with Emma and Jack so Sean could come to the hospital. It was an act of God the way that story played out and we are forever grateful to everyone involved.
They worked on her for 2 hours before moving her to the PICU. By that time, they had an idea it was heart related because they could not get blood pressure readings. The ECHO confirmed Coarctation of the Aorta (her Aorta was pinched almost completely shut). We were quickly informed that she would need to be transferred to the downtown TCH campus and will likely undergo surgery in the next 24 hours. The team ordered her to be transferred via the Kangaroo Kare Team (mobile ICU). This was a team of 8 people to transfer our tiny little baby, I was overwhelmed to say the least but was able to ride in the ambulance with Lily while Sean drove my car downtown to meet us.
We arrived downtown at 6am and were put in the Cardiac ICU. The next few hours was a stream of doctors and nurses explaining what was going on and about to happen. At 9am they took Lily back to the OR to repair her aorta. Her surgeon was a quiet man that we had to lean in to hear him speak but he is one of the best and was very patient with us and our questions.
By noon, Lily was back in the CICU on her road to recovery. Recovery had a few setbacks but ultimately she did better than anyone thought she would.
In our family, we believe God saved Lily's life that night. He gave us the peace to ignore the doctor's advise and go to the ER, despite the risks. He got us there before her heart stopped. He gave us a nurse that recognized Lily's critical state through well trained eyes. He was with every nurse and doctor that worked on her to give us a diagnoses in just a few short hours. He was with the Kangaroo Kare team as they transferred her safely. He was with Sean and I to keep calm and communicate with her care team despite the utter shock we were in. He has been with us every step of her recovery.
By supporting our team or even walking with us, you're contributing to research that can save and enhance the lives of infants born with CHDs, as well as children and adults living with these conditions. Your support makes a significant impact, and for that, we want to say a heartfelt thank you.
Will you join us in making a real difference? Please consider supporting our team or walking with us. Every step we take brings us closer to improving the lives of those affected by congenital heart defects.