Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Sunday, July 18, 2010
Bo has a baby sister as of June 19th
It has been too long since my last post. The days come and go. The hope, the paralyzing fear, the exhaustion, the mind-numbing heat. These thoughts come and go and I rarely have the heart to post them, hoping the dark days will soon be supplanted by joyful ones, and fearing the joyful ones will be overtaken by disappointment. But the reality is that heartbreak is never-ending. We don't just experience it once and say to the Universe, no thanks, I'm passing on seconds. I already got my ticket punched. So I live between heaven and earth, touching reality, anxious of heartache, grateful for grace.
Ahn Tsuen Andrea Velarde-Chan was welcomed into our family on Juneteenth, 2010. Although her labor was induced, with a mild medicine, the rest of the labor and delivery was completely drug-free (like Bo's). Labor lasted ~15 hours, with only 5 of it being active. Ahn was born midday with her father, midwife and nurse present at Bronson Methodist Hospital. She was quietly placed on my chest after birth and remained there for quite some time as we drank in her peaceful entrance into our lives. She weighed 7 lbs 6.7 oz. and was 20 inches in length.
Her Chinese name is Peace River. Peaceful, tranquil river. Her middle name is in honor of our dear friend, Andrea Rosenberger.
Bo has better and worse days during this time of seismic transition from being an only to being a sibling. It is everything I had hoped for and everything I had dreaded. When we came home from the NICU to contemplate the darkness and uncertainty of Bo, I dreamed of another baby. One to take away the heartbreak waiting around the corner, at worst. One to temper Bo's only-child status, at best.
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