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For the first few days of my sweet daughter’s life, we had no idea that she was sick. Tess is my fourth child. She got a perfect score on her Apgar exam. At 4-days old, I took her to the hospital Emergency Department (ED) for dehydration. The doctors thought she had a simple jaundice problem. We spent a couple of days under the “bright lights” and were getting ready to be discharged to head back home.

One of the scariest things about my experience was how quickly things started to fall apart for my newborn daughter. I nicknamed it “her dive bomb towards death.” At one moment I was crying because her low temperature meant that she had to spend more time under the warming lamp. After 72 hours of being under the bilirubin lights to treat jaundice my arms were aching to hold my baby girl!

A few hours later, baby Tess was moved to my local hospital’s Neonatal Intensive Care Unit (NICU). It seemed like every minute brought more bad news. My child looked so awful. The thing that scared me the most was the nurses’ facial expressions. They went from friendly and reassuring to extremely grave. I knew I was suddenly thrown into this unfamiliar role of being a “mom whose kid was dying.”

When we got the final diagnosis of duodenal atresia, it was a huge moment of hope for us. I didn’t realize it though, at the time. I focused on how awful it was going to be to have a teeny, tiny newborn get major abdominal surgery. I was very frightened that we were moving to Children’s National. To me, it seemed to say that my daughter Tess was “weird” and “one of the sickest babies in the entire DC area.”