Tell Me a Story - Bringing nora home

"This is Nora Chestnut. She's almost two, and she's a patient at Cincinnati" "Children's Hospital." "And I'm Emily Chestnut and I'm her mom. Nora is actually a twin," "and at 20 weeks we got an ultrasound that showed she had a heart defect." "We also found out at birth that Nora has Down Syndrome. When I look at her" "diagnosis for her heart condition and diagnosis of Down syndrome I always tell people I'm" "very glad I knew about the heart" "up front because it's a here's the issue, here's how we solve it, it's very" "successful." You know throughout the future and you can kind of look at those statistics," "where's Down syndrome as a diagnosis," you really, beyond the diagnosis at birth, know nothing until the child reaches a" "milestone or doesn't or is delayed." "And I felt like perhaps I would have started to worry too much about what does that" "mean for her, and really it just means she gets there when she gets there. And" "I'm doing the best I can taking her therapy appointments and parent groups "and, you know, networking that way, but" "it's just Nora. Getting the news of" "a child with Down syndrome is life-changing. I mean, it just is really" "hard. You" "know there's this poem that I'm sure people talk about for autism 'The" "Road Map to Holland,' so people are pretty familiar that and I probably got a hundred" "copies of it from" "well-meaning friends. And I liked the analogy in that you're planning for a" "trip and all of a sudden your life just up turns and you don't go to Italy go to" "Holland," "but Holland is a beautiful place too. Having twins," "one whose typical and came home from the hospital right away, I think I didn't" "have" "as much time to dwell on the fact that Nora was it the NICU and Katie was here." "I was breastfeeding. I was pumping. I had one baby at home and one baby. I was" "kinda" "the first few weeks just making due. But even after that my first thought," "the very first day in hospital, was 'They said something's wrong,' and I started" "thinking about" "other trisomies that don't always have such good outcome, so by the time they" "said its Down syndrome I was like, 'Oh few I know tons of people with Down syndrome, so" "that's a good thing." "And then, you know, I had a lot of questions, but it was really day to day. It was what do I do to" "make sure Nora comes home as soon as she can? She was in the NICU for five weeks," "but it was mostly related to feeding, it wasn't actually her heart that was" "keeping her there." "And they said, 'Well you can go home with a feeding tube.' I was like," "'okay, great. Let's go home with a feeding tube and, you know, I was all gung ho and ready to" "just have her be part of our family."