During their NICU stay, both boys underwent several surgical procedures, including hernia repair for Garrett, the insertion of feeding tubes, and, for both boys, when they were two weeks old, heart surgery to repair patent ductus arteriosis. This is a condition where a fetal valve in the heart doesn’t naturally close after birth, so too much blood is going to the lungs. It was more than Julie thought she could take: “I said, ‘Are you people trying to kill me? You're going to do heart surgery on both my kids, and they don't even weigh two pounds?’”
Despite the many emergencies and procedures, the boys both began to thrive, and eventually they were ready to go home. Garrett went home first, at five months. Two days after Garrett went home, Austin had a tracheotomy and was transferred to the PICU. He was finally ready to come home just before his first birthday. It seemed like their long struggle was finally over.
To celebrate that long-awaited milestone, Julie and Jeff decided they could finally have a night out, their first since the boys were born. The night before Austin’s discharge, they went to a casino with family members and stayed overnight. The next morning, Julie drove to the hospital to pick up Austin and Jeff drove to his office at Travelers Insurance.
“When I got there,” Julie says, “they were doing an ultrasound on Austin and said, ‘Oh, we're just checking out some things.’ And I didn't really think anything of it, because they were always checking out things on him. Then the doctor said he wanted to meet to talk about some things in the conference room and that my husband should join us. That set off alarm bells in me. Anytime we ever had to go to a conference room, it was always for very terrible conversations. Nothing good ever comes out of the conference room. I asked Jeff if he could join us, and he asked if he could just call in. So I'm on the phone with him, walking down the hall and I see Dr. Moss coming to the conference room [Kerry Moss, MD]. We knew her because she was part of the palliative care team, and Austin was on palliative care when he was in the NICU. They were part of a lot of those difficult conversations that we had. So I'm on the phone with Jeff, and I said, “Oh no, palliative is coming. This is not going to be good.” We went in, and they told us Austin had a tumor on his liver.”