“There were some weeks when we thought, Is he going to make it? Every day, every minute was a gift,” says Ashley.
It was an exhausting, emotional five months for Ashley and Jeremy. They watched their baby boy battle for his life, with the help of a ventilator to support his lungs and feeding tube to provide him with nutrition to grow. They traded off being by his side with being at home for their two other children – Jonathan, then age 4, and Julia, then age 2.
It was also filled with moments of beauty, like the care they felt from Jack’s NICU team, led by neonatologist Shabnam Lainwala, MD.
“I can’t even imagine what we would’ve done without Dr. Lainwala and Jack’s nurses,” says Ashley. “A lot of credit goes to them for getting us through. Some days, they were there taking care of us as much as they were taking care of Jack.”
It took 150 days. But slowly, steadily, “on his own terms,” says Ashley, “Jack did it.” He still needed supplemental oxygen and a feeding tube in his stomach. But he was strong enough to go home.
His care team was with him every step of the way. Connecticut Children's neonatology team helps families not only prepare to leave the hospital, but also navigate their baby’s unique care needs once they’re home. That includes everything from nutrition and lactation support to the Neonatal Neurodevelopmental Follow-Up Program. To monitor his breathing and digestive system, Jack also received ongoing care from the divisions of Pulmonary Medicine and Gastroenterology.
“We had so many follow-up appointments, and so much support,” remembers Ashley. “The number of experts, the hard work, the circle of care around Jack – I have never seen anything like it in my entire life.”