When Taylor Kochmit’s son Milo was born with complications at 38 weeks, there was little time to react to everything that happened next. Milo was rushed to an area Neonatal Intensive Care Unit (NICU) where just three days after birth, he underwent surgery for tracheoesophageal fistula (TEF), a rare condition where the trachea (the tube that connects the throat to the lungs) and the esophagus (the tube that connects the throat to the stomach) start out as one tube, but during this time they should begin to split into two separate tubes. When this fails to happen, an abnormal connection between the trachea and the esophagus can occur at one or more places.
Babies with TEF have trouble tolerating feedings and can have difficulty breathing because stomach acid refluxes into the trachea and fills their lungs with fluid, sometimes causing pneumonia.
After surgery, Milo was transferred to Lurie Children’s.
Taylor credits NICU nurses caring for Milo for helping her and her husband, Jon, get through the difficult time. “A NICU nurse they're taking care of this baby, medically responsible for them, but they're also looking out for the parents. It's just such a unique job to have. They were incredible, making sure I was okay,” said Taylor.
As Taylor and Jon were coping and juggling having a baby in the NICU, a child at home and all during a pandemic, Taylor wanted to repay her gratitude for all the amazing support and care her family has received. She began to curate a NICU-specific Amazon Wishlist with insight from nurses and child life specialists.
"There was a lot of feeling of wanting to do something, like anything, and really not having a place to put it. And so I had mentioned that I had noticed some of these things that the babies used that were really helpful to assist the nurses."
Just days after creating and sharing her wishlist, dozens of boxes were delivered to her house including one of the most desired items, the mamaRoo baby seat, which helps soothes and rocks babies. To date, thanks to the overwhelming response, Taylor has been able to donate supplies to five Chicago-area hospitals.
“We are deeply grateful for Taylor’s efforts! We are thrilled to receive an abundance of items that will directly and positively impact NICU families and our babies for years to come. Taylor’s efforts and those of her community are truly extraordinary,” said Katelyn Zilles, CCLS, Child Life Specialist, Lurie Children’s NICU. “Amidst a global pandemic, the arrival of her medically complex son, a length NICU hospitalization, a preschooler at home – Taylor has seemingly moved mountains to make a difference. I can only infer that her strength and resiliency were inspired by that of her magnificent Milo!”
While Milo, now 4 months old, remains in the NICU, recently celebrating 100 days, Taylor is proud to share that he’s made significant progress and hitting big milestones including ditching his feeding tube and chest tube. Taylor and Jon were able to feed him his first bottle in months and are relieved to report that his TEF leak is closed.