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Lillian (Lily) Grace Finn was born on April 14, 2021 during a normal delivery at full term. Her and I were sent home a day later to the rest of our family: Dad, big sis (Emma) and big bro (Jack). We were learning how to be a family of 5, settling in with our "healthy" newborn, not knowing what was coming. Lily was the most normal and easy newborn, eating every 3 hours like clockwork, sleeping in between, so content.
Day 10 started out with an abnormal nursing session (3am), she only fed for a few minutes and then went back to sleep. As a third time nursing mom, I knew that was odd, but also knew she likely would make up for it on the next feed. No worries. The next feed was abnormal, repeating behavior from the first. Throughout that day, I tried all the tricks (syringe feeding, bottle feeding, skin to skin, etc.) and she wouldn't nurse for more than a few minutes. She was still making diapers so that told me she was getting something, even if not enough. By 4pm (12 hours in to this abnormal behavior) I called the pediatrician to discuss my concerns and was advised to monitor for dehydration and call back if we remained concerned, the ER is not advised unless we are certain she needs immediate help.
By 6pm, I took her to urgent care to have a professional put eyes on her. The doctor had me feed her by nursing and bottle to observe the behavior. Lily would not take any milk at this point, but she made another diaper while we were there. The doctor took her vitals and said she is fine, but agreed the behavior was odd. She did not have any cause to send us to an ER or elsewhere for monitoring. She advised to go home and do skin to skin, warning us that the ER is not advised due to COVID risks. So we went home and did skin to skin for 2 hours with no improvement. Instead we felt Lily was starting to seem lethargic so we called the pediatrician again, for advice. The pediatrican advised we could wait until morning (given the diapers) and bring her in at 8am (it was 1030pm at this time). We explained we didn't feel comfortable with that solution, we wanted to go to the ER and have her looked at. The pediatrician advised this may not be a good idea due to COVID, but we went anyways.
Lily and I arrived at Texas Children's West Campus ER at midnight. I had never been to an ER and did not understand how they worked, so I saw a waiting room full of sick kids and became immensly concerned that I was putting Lily in danger and we were in for a long night. After filling out the paperwork I peaked in the stroller at Lily and thought to myself "She doesn't look so good, I should alert someone.". Right as I stood up her name was called by the triage nurse, Charlotte. We went in the triage room and I explained the concerns and put Lily on the scale. Charlotte picked her up and ran, telling me to keep up. What she saw, that I didn't see, was Lily's greyish, mottled coloring and that she was having retractions.
Charlotte called in help and suddenly there were 10 people in the room with us all focusing on Lily, except the nurse asking me a dozen questions. While answering all of the questions so they could try to determine what is wrong, Lily's heart STOPPED and they begin administering CPR. I was in shock to say the least. Trying to remain calm and answer all of the questions while they worked on her. Before long, they stabilized her but she was in critical condition, intubated, neruologically unresponsive, and septic. The nurses could not obtain a blood pressure reading and upon moving us to the PICU, an ECHO was done. They immediately determined she had Coarctation of the Aorta and her aorta was nearly pinched off, only 2mm in diameter, meaning she had no blood flowing out of her heart. The diagnoses was confirmed by cardiology and they immediate begin making plans to transfer us downtown, explaining Lily would have surgery in the next 24 hours.
At 5am, the Kangaroo Krew (ICU ambulance) arrived to transfer Lily and by 6am we were in the CICU downtown. By 9am Lily was in surgery and by 12pm (12 hours after we arrived at the ER) she was back in the CICU with a fully repaired aorta. The recovery outlook was a mystery, she was in such critical condition prior to surgery, the doctors weren't sure if her organs would start functioning again or if her brain would start responding. BUT, within 4 days, Lily was fast on the road to recovery and moved out of the CICU to the in-patient floor. She remained in-patient for 9 more days, mostly focused on gaining weight before they would discharge her. Her organs and brain bounced back to normal after her surgery.
That was 4 1/2 years ago and today, Lily is a NORMAL 4 year old. She is fiercely independent, active as can be, smart as a whip, and you would never guess her heart has a scar on it. In our family we believe in God and we have countless stories of the way God showed up the night Lily became sick. Stories that can only be explained by God's intervention in saving her life. These stories are our testimony that we share in our mission to bring other's to Christ.
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