Monday, March 25, 2013

A Journey Begins

If I thought I had a lot of doctors appointments during my pregnancy, nothing compare to the first two weeks of Ondine’s life on earth. Or what’s to come over the first year of her life.
The first post hospital visit was a visit to Seattle Children’s Hospital craniofacial unit. This was my second visit, Collin and Ondine’s first. This appointment isn’t what were hoping for. We’re hoping for a meeting with the surgeon to discuss the trajectory of her surgery. Nope.
1st up are the nurses. They check weight, length and skin color. They have me feed her to watch and judge if she’s eating correctly. Turns out Ondine and I are pros at bottle feeding. You see, a cleft lip & pallet child can’t nurse. It’s been one of those ongoing “I’m an unfit parent” internal conflicts for me. And everyone else wants to tell me just try to breast feed. I want to scream “I can’t!” But the reality is she can’t. It’s not her fault any more than it is mine. She can latch, but because there’s a hole in the roof of her mouth and a gap in her lip she can’t get any suction.  It’s been hard for me to come to terms with but I refuse to formula feed if I can avoid it so our schedule is pump-store-feed-repeat. It’s painful and exhausting but it has to be done for her sake.
Next up is the social worker. I panicked slightly when they told me I had to meet one of those.  Luckily she turned out to be a fabulous woman whose purpose there was to make sure I had the tools I needed to care for my child. Her job is to be there to support us if we have questions, help us navigate insurance if necessary and anything else we could think of. She was the first social worker I’d ever met and trusted from minute one.
Finally the pediatrician comes in. She takes the exam even further checking reflexes, ear canals eyes and all the other standard healthy human tests. Ondine passed with flying colors. Then they were able to answer a few questions but not the main one. The answer is still 3-6 months and we won’t know until you meet the surgeon.
So we head into Easter. We have not yet met the surgeon, but we’ve met his team.

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