“Lily was born on 4/7/19 after being stubborn and waiting to for me to be induced at 41 +1 weeks pregnant. When she came out she was a bit “blue” but I was told it was “normal”. I asked again and they did the newborn screening tests and found her oxygen levels to be in the 70s and oxygen was not helping. She was taken to the NICU and they called in a specialist. It was then determined that she had Transposition of the Great Arteries with a VSD. She was transferred to Mayo Rochester to have a ballon procedure to make an ASD to allow the blood to mix. She had that procedure done on her birthday and we were discharged after 8 days in the NICU. It was determined that Lily didn’t have the typical TGA. She also had a LVOT, narrowing on her left artery. We were very closely monitored at home, to allow her to grow. In August she had a CT angio to make a 3D model of her heart to show the surgeon. She struggled to keep her stats up after the procedure & it was determined that her stats were startIng to trending downward. At the end of the August she was admitted for a simple cold. She couldn’t keep her stats up & was miserable. She had a cath procedure to enlarge her ASD & they found that she had severe pulmonary stenosis. The next steps were determining with procedure to repair her heart. They were trying to decide between the Rastelli or Ross Kono. It would later be determined that she needed the Nikaidoh procedure & they couldn’t do it there. We were given options of Milwaukee, Boston or Philadelphia. We picked Milwaukee as it was the closest and insurance covered there.

Once we got the referral we had a surgery date 10 days later. It was all a fast whirlwind leading up to her surgery. We met the surgeon, Dr. Hraska, who was very confident. I wasn’t nervous about the surgery I was nervous about the complications after surgery. The surgery was successful he was able to do the Nikaidoh procedure with the Le’compte maneuver. This makes it so that Lily will need less open heart Surgeries in the future. Right now they are planning on one between the ages of 10-14 to put in a pulmonary valve. Lily had a seizure the day after surgery because of a brain bleed from bypass. They were able to control the seizures with 3 seizure meds. This extended her intubation time, she was intimated for 7 days. Lily also developed chylothorax & had chest tubes in for 21 days. She struggled with the low fat formula and we spent 25 days in the hospital working on feedings. Luckily she decided to take the formula by mouth and we were able to come home on November 1st. Lily is now healed from her chylothorax, and off all meds for her heart. We are still on seizure meds as a precaution until we can get into neurology. Lily is back to nursing & breastmilk. She is gaining weight and working on her gross motor skills. We are so happy to be home all together!” – written by Lily’s mother, Andrea. December 2019.