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I Only Saw Tubes on My Daughter’s Face. Then My Son Saw Something Else.

Four and a half years ago, it was a typical day with our family at home, juggling care for our newborn, Ava, and her older siblings. Mason was 3 years old, and Maddi was 2 years old. We knew Ava wasn’t gaining weight, but we had no idea what was preventing it or what was in store for us. 

Late one night, Ava developed a high fever, and we rushed her to the emergency room. Ava’s oxygen saturation was low, and they admitted her for flu observation and oxygen support. Six days later, Ava would fail her first swallow study. We discovered she had aspiration pneumonia, not the flu. She would receive her first nasogastric tube to prevent aspiration, start genetic testing and would not eat or drink by mouth again for three years.

I remember feeling afraid when Ava first received her NG tube in the hospital. I wasn’t afraid of what people would think or that she would have it forever, because we initially thought it would only be for seven days. I was afraid of the discomfort it would cause her and learning how to put it in. I hated how the tape on her face irritated her delicate skin. 

However, learning to feed Ava with the tube was easier than I anticipated. Ava was continuously fed small amounts of food for 24 hours a day to prevent aspiration. That meant we not only carried Ava everywhere we went, but also had to carry her feeding bag, and for several weeks upon discharge, her oxygen tank.

For the two weeks that Ava was inpatient, we kept Mason and Maddi at home and in daycare to keep their daily lives as normal as possible. I primarily stayed in the hospital with Ava since it was the end of my maternity leave, while my husband juggled work and Mason and Maddi. We switched places a couple times during those two weeks, so I could see Mason and Maddi and my husband could see Ava.

After two weeks in the hospital, we went home with Ava still using an oxygen tank and NG tube 24 hours a day. I remember the day we went home like it was yesterday. Mason and Maddi hadn’t been to the hospital, so they didn’t see Ava with her NG tube and oxygen tank. I was worried about what they might think or say. Sometimes kids have a way of being very innocent and honest and say things adults may not be ready to hear. I was sitting on the couch with Ava in my lap, staring at her tubes — not at her.

Mason, in his 3-year-old wisdom, came over and lovingly patted Ava’s head and said in his sweet little voice, “Awww, she’s so cute,” and walked away. I froze and realized my heart was pounding because I was afraid he would say something about her tubes. I hadn’t yet figured out how I felt about them, much less how I would explain them to a 3-year-old boy. But in that moment, seeing Ava through Mason’s eyes, I was forever changed. I no longer saw the tubes on Ava’s face, I only saw Ava.

Kori Jones the-mighty-07142015-003

Follow this journey on The Jones Party of Five.

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