561 Days

Speak Now for Kids is observing World Prematurity Day to raise awareness for this serous health crisis. Premature birth is the leading cause of death in children under the age of five worldwide. Babies born too early may have more health issues than babies born on time, and may face long-term health problems that affect the brain, the lungs, hearing or vision.

This week, we spoke with Jax’s mom, Kari, to learn more about Jax's journey as a premature baby at Children's Hospital of Wisconsin. 

561 days. That’s how long Jax has spent at the hospital before going home. Every single day since he was born on Jan. 7, 2017 — nearly three months early. But he finally went home this past July thanks to Children’s Hospital of Wisconsin’s outstanding medical team.

Because of his extreme prematurity, Jax’s lungs weren’t developed enough to function when he was born — he was diagnosed with chronic lung disease, tracheomalacia and pulmonary hypertension. My son had six different surgeries during his 561-day stay and received care from many different specialties working together to help him grow, develop and get stronger.

Without children's hospital, Jax would not have survived. We’ve had some really scary moments, some moments when we were told Jax wasn’t going to make it. The doctors and nurses have been exceptional. They’ve become part of our family. They have the knowledge and heart to care for my son and allow him to come home, something we were not sure would ever happen.

Even though Jax is now discharged from the hospital, we stay very involved with his doctors to make sure we’re all on the same page with how we treat him. Medicaid made key services available for my son that other insurances do not always allow. We would not be able to recover from medical debt without this program. While Jax is still on the ventilator at home, doctors expect him to outgrow it within a few years and live a full and healthy life.

Jax has been home for four months and is off many medications. Keep believing in your child and let them show you what they can do, they will completely impress and amaze you with their abilities to thrive.