Evelyn's journey

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My daughter was born in October 2016, she was diagnosed in utero with truncus arterious, she had open heart surgery at 3 days old, then a week later we also found out she was diagnosed with 22q.11.2 deletion or digeorge sydrome. She spent the first 6 weeks of her life in the hospital fighting for her life. She had a rough patch where we weren't sure she'd ever make it out of the hospital.

When we left the hospital, Eevee was attached to oxygen, food pump (She was feed via a food tube through her nose) and and heart/o2 monitor.

She's had two supraglottoplasty surgeries, a g-tube( feeding tube directly to her stomach) placed and two sleep studies. Endless doctor appointments, with numerous specialities. Feeding specialists, physical therapists, and nutritionists.

She has a recessed chin, making it hard to eat, doesn't help she has a delayed swallow so she aspirates on liquids, and possibly causing her severe obstructive sleep apnea. She may need jaw surgery in the future.

She is still exclusively tube fed, on oxygen when sleeping and will need additional heart surgeries throughout her life.