When we first heard the term hypoplastic left heart syndrome (HLHS), it felt as if our world had come to a halt. It was a typical Thursday morning, just another routine 20-week ultrasound. By Friday night, I found myself reading the results online, and a quick Google search sent my heart into a tailspin. By Monday morning, I was on the phone, pushing to schedule the earliest possible appointment. Two weeks later, our fears were confirmed by a maternal-fetal medicine specialist, and we were quickly referred to Lurie Children’s Hospital. The following day, another scan solidified the diagnosis. From that moment forward, our journey became one of learning, preparing, and holding onto hope.

Ellie was born in January, and just two days later, she underwent her first open-heart surgery. Initially, she did remarkably well—so well that her chest drains were removed, and we began to see the light at the end of the tunnel. However, on my first night away from her, we encountered a setback. Fluid began to accumulate around her heart, leading to an epicardial effusion. A pigtail drain was placed, and thankfully, it worked. Her recovery was a rollercoaster. She was extubated, only to be reintubated the next day when her breathing became too fast and shallow. Additionally, we discovered that her left vocal cord was paralyzed, likely due to the surgery, which made feeding a challenge. 

Every small step forward seemed to be accompanied by another unexpected hurdle. But Ellie is a fighter. Gradually, she began to improve. She graduated from the ICU to the cardiac step-down unit, and after weeks of careful monitoring, feeding therapy, and glucose management, we finally heard the words we had been longing for—we were going home.

Bringing her home has been both exciting and overwhelming. With an NG tube, strict feeding schedules, and a constant worry of illness, every day is a delicate balance. We’ve had to adjust to a new normal, where even a simple cold could land us back in the hospital.