While waiting the endless hours for my scheduled c-section, Lou and I finally admitted to ourselves we had seen the neonatology report and knew it revealed the baby was a boy. Because the doctor was delayed hours in another surgery, we had lots of time to sit chatting about potential boys names.
Fast forward to the OR. Baby comes out, whisked away by the neonatology team. "It's a boy, right?", I ask. Much to my surprise, the anesthesiologist says, "No, I think they said it was a girl!"
Puzzled, but happily teary, Lou and I began to adjust to the new reality of a little girl. Walking her down the aisle. Cute baby dresses. We discussed how to spell the girl's name we'd chosen. I gave our new daughter a kiss, before they again whisked her off for evaluation - her Apgar wasn't great, her color was a little off.
That something was wrong became clearer as we waited and waited and waited in recovery with no sign of baby. Nothing said about breast pumping. No information whatsoever.
I can't begin to describe my anxiety at being separated from my baby. If not for the fact that my legs were paralyzed from the anesthesia, I would have run from room to room, looking for her.
Then the neonatologist showed up, a grim look on her face. The litany of findings began.
The baby has XY chromosomes, but female anatomy. The baby has extra fingers on her hand and an extra toe. The toes are fused. There are club feet. Extra skin around the neck. Low set ears. Happy moment immediately turned into something horrifying. And still, I just wanted to see my baby.
Lou was able to go to the NICU first. Eventually, they let me go, too. Dazed, painful from my surgery, reeling from all the unexpected news, finally, I got to hold my baby on my chest.
It was in the NICU that Lou first heard the possibility of Smith Lemli Opitz from the neonatologiy resident.
Want to know more about SLO? Read this: http://www.ncbi.nlm.nih.gov/books/NBK1143/
I will try to get down over the course of the next few days what an emotional roller coaster we've been through in the past 36 hours. Our vision for our family has been irrevocably altered. Maybe, in retrospect, it will be for the better. It's hard right now not to see how it might be for the worse. But for right now, I am trying to focus on the new little being who has entered our lives: Harper Merrick W.
Welcome, little girl. This wasn't what I wanted for you. This wasn't what I wanted for any of us. But together, some how, we will try to make it work.
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