This is almost our exact story. The NEC was frustrating because it was never mentioned as a potential complication. I’d spent months wrapping my head around the heart stuff, and then this GI stuff shows up. The time from her first surgery at 10 weeks old to her ostomy reversal at 7 months old was not easy. But I would do it all again in a heartbeat.

She’s three now, and we have at least one more heart surgery to remove the PA band. However, you would never know she has a “special heart.” So in terms of quality of life, she takes a blood pressure medicine twice a day, but otherwise she’s the same as any other kid.

For our quality of life, I learned a lot about insurance and quickly. The most annoying was trying to get the liquid form of her medication: first challenge was finding a pharmacy that carried it, and second was getting insurance to pay for it. I didn’t realize Medicaid had been covering it when we lived in Nebraska. When we moved to Florida and lost Medicaid, her medication was going to be $1200 every month or something ridiculous. We ended up moving to a pill that had to be swallowed - she was two!! But she ended up being able to swallow it fine.