Life at Home

Eliza was discharged to home in late June 2006. Since we live in a city, she got her first stroller ride on the walk home on a beautiful day. She came home with oxygen and monitors, but none of that seemed to matter much since she was finally home. It was so nice to just have the two of us home. I declined to have any visiting nurse service because after 100 days I wanted to just be alone with my child. The NCCU nurses called regularly the first few days to see how we were doing and provided some much needed advice, like leaving the radio on because she wasn't used to the quiet.

Eliza's first year at home was filled with a multitude of doctor appointments, a small pharmacy of medications, one very nasty week-long hospital stay and a therapy schedule that requires Eliza to have her own calendar. Despite all of this, I have tried to give Eliza as "normal" a life as possible. Luckily she weaned off oxygen which allowed her to go on vacation to the Caribbean to see our family, not once but twice. She goes to the park, the zoo, the beach and spends weekends with her Nannie and Grandpa. Although I am very cognizant of keeping her healthy and avoiding "germ-fests," I see no reason to keep her under lock and key and have her live in a bubble. Just the simple act of taking her for a walk puts a smile on her face ... and it makes all the people she waves at smile too (she is quite the little waver).

Her days are not though filled with playdates and music classes. Instead her days are filled with physical therapy, occupational therapy, speech-feeding therapy and time at a sensory gym. Thanks to her wonderful therapists Eliza has made amazing strides, especially in her gross and fine motor functions. Her eating is another story. At 18 months actual age, 14.5 months adjusted age, Eliza's diet is limited to Pediasure with Polycose and four ounces of yogurt. She has a sensory processing disorder which makes eating not the fun experience it is for the rest us. SPD is just one more in a long list of acronyms that Eliza has had attached to her, IUGR, SGA, RDS, PDA, AOP, ROP, BPD a/k/a CLD, the list goes on. She has managed to rid herself of most of these, and with time, SPD will also hopefully be just a memory and a note in her chart.

Photo: Eliza Grace at 6 Months Old