The worst day of my life was the day I brought my baby home

We had left the hospital certain that his feeding tube days were over. We were wrong. 

After 18 days in the neonatal intensive care unit, the NICU, we had two stops to make before bringing our baby home. The first was with the feeding therapist at Seattle Children's hospital. She showed us what no one in the NICU had seen. Every time we gave him a bottle, nursing was too difficult for him, he was in danger of aspirating. Feeding him could fill his lungs with fluid. I was horrified.

The second stop was the pediatrician's office. We asked for a feeding tube, explaining what the feeding therapist had told us. He said no. I didn't know what to do. We liked this doctor, he was taking care of our oldest. Exhausted, scared, and confused, I had no voice to insist. We headed home with a baby that weighed less than 4 ½ pounds. He needed food. Feeding him could kill him. My horror grew.

I don't remember how we got through the night. The next day we were back at the the pediatrician's office. He agreed to the tube. It was only later that I had the courage to push back and ask the doctor, “Why didn’t you give him a feeding tube?” His response made sense. Until it didn’t.

He knew our son had spent 18 days in the NICU with highly qualified medical personnel taking care of him around the clock. But he didn’t know about the once-a-day bottle feedings. He didn’t realize those feedings were the only time our tiny infant was out of the incubator and in our arms. And the only time the nurses and doctors didn’t monitor him. He hadn’t seen what the feeding therapist pointed out to us. When our baby was given a bottle his eyes grew large and his lips turned blue; clear signs of distress. But I knew. He could have believed me.

In the special education system, being believed can be a challenge. “She comes home from school exhausted and anxious. There’s something going on.” “I’m wondering about more reading focus. During our bedtime reading, there are now only two books to read. I know they’ve just memorized the story.” “What was going on before he knocked over the chair? Was he asking for more time to finish the work?” When parents see something that doesn’t make sense about their child, they ask questions and expect support. When the question is ignored or the support is denied that’s when advocacy often starts.

The worst day in my life delivered my earliest lesson in advocacy. This wasn’t my first child but it was the first time I was dealing with experiences the prenatal and parenting books hadn’t covered. The advice I would give to my younger self is what I share with parents looking to increase their advocacy skills. Use your voice, share what you’ve observed, and, when you need help, ask for it.