I saw my boss Kim and her baby Zoey yesterday! I took dinner to her and her husband’s house and was able to visit for about an hour. It was incredible.
Quick Recap: Baby Zoey was born with Trisomy 18 or Edwards Syndrome. Here are some quick statistics about Trisomy 18: The survival rate of Edwards Syndrome is very low. About 95% die in utero. Of live born infants, only 50% live to 2 months, and only 5–10% will survive their first year of life.
Given these statistics and given that Zoey is 4 weeks today is a true testament of this little girl’s pure strength and the power of prayer.
Zoey is a tiny bundle of joy—still under 4 pounds, but getting stronger every day. She takes her feeding through a feeding tube in her nose. It takes about 25 minutes to pump about 3 ounces of breast milk into her belly. And she needs to be feed every 2 and a half hours; round the clock. This keeps Kim and Dan very busy, but they are completely loving every second of it. Kim was in jammers and didn’t have her hair done and wasn’t wearing any make-up, but she has never looked more beautiful.
I had the great privilege of being able to hold Zoey while she took her feeding. She is tiny, but sturdy and very aware of her surroundings. She looked me in the eye and would turn her head towards Kim or Dan whenever they talked. I also had the great privilege of hearing her cry and seeing her take a pacifier for a few minutes. Crying, along with sucking, is a natural instinct lacking in babies with Edwards Syndrome. So, you can imagine those tiny cries were pure music to Kim and Dan’s ears.
Looking at the statistics and seeing Zoey yesterday completely baffle me. I don’t understand how a baby who is getting bigger and stronger everyday would be dying. Kim and Dan have a Hospice nurse come to their house everyday to check on Zoey. I didn’t get into the specifics and discuss timeframes with them. They said they are taking everything “day by day.”
Seeing Zoey, Kim and Dan yesterday made everything in my life seem small and not-worth-worrying about.
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