We heard about Omegaven from our friend, the archivist. Librarians are trained to find information fast, and he did just that. When we were at our darkest hour, not knowing if Bo would live to his 100 day birthday, not possessing the emotional bandwidth to do more than sleep, eat and sit in the hospital by the baby's crib, our friend found this therapy for us and pointed us to the road. Once Bo's bilirubin started rising, we started planning our trip.
And we have been blessed. A friend of the family donated their beach house to us for as long as we need it (only an hour up the expressway from Boston). Michigan Children's Special Healthcare (a secondary insurance backed by the state for special needs children) agreed to pay for my air fare. Dr. Puder (who started saving babies with this therapy) encouraged us to come see him sooner, rather than later. And his administrative assistant, Liz, my Blue Cross Blue Shield caseworker, Cathy, and my Michigan Children's Special Healthcare caseworker, Chris, all supported my as we navigated the logistics around this trip. My brother-in-law drove with my husband and all our stuff, while his partner accompanied me and Bo on the plane trip. My sister donated the miles so Jennie could help us travel. Our friends (our chosen family) at home are watching our cats and mail and house. As well as taking us to the airport, coming by to hold the baby while I made all my preparatory calls and emails, and bringing by gifts for Bo and treats for us.
Oh, and prayers. I used to be totally secular. But many friends and family have offered to pray for us, and it has humbled me. I feel that Bo is so loved and blessed. He is truly a lucky pig.
