Our world has completely changed. I didn't expect it to change and it has taken me days to even begin to think clearly about it all. On Monday, we learned there was a problem with the shape of vessels leading away from Little Man's heart. On Tuesday, I was in to get a fetal echo at CHOP, waiting quietly and patiently while the tech took an hour of images. She left the room and returned to explain that I would meet with a doctor, nurse, and social worker. My heart sank. Alone, I sat around a table in a small conference room and learned that our son has a very rare congenital heart defect (truncus arteriosus) that has left only one artery where there should be two. Open heart surgery will be performed right after birth. There's no option - he needs it to live. And he will need more for the rest of his life.
And the bad news continued. "22q11.2 deletion" is a possibility - accompanies this heart defect in 30% of the cases. The syndrome was considerably more frightening than the prospect of open heart surgery. Learning disabilities, facial deformities, serious mental illness, problems feeding, spine problems...these are only a few. A new test will be run. You should know within weeks if he has this.
Digest. Shift into pragmatic mode. Ask about prognosis. Ask about mortality rates. Ask about chances and risks and percentages. Try my best to remember it all so I can call my husband -- my dear husband who is patiently wading through meetings, checking his cell every moment -- to tell him that his son is sick, very sick.
I'll write one day about the details, but for now I am making my way through this week following. Holiday with my Dad. Beach time with my family. Sharing a weekend with friends. It all should be happy, but I struggle to sleep and steal moments in corners to cry. I lay staring at the wall in the dead of night wondering about affording hospital bills and having less (time, money, energy) for Olivia. We are resolved about the heart condition -- convinced we can make it through and create a good life for our son and our family. We are terrified of 22q and a lifetime of unknowns, of waiting for yet another shoe to drop and disrupt his happiness and peace.
Thursday came and went without a call. Friday came and went without a call. Monday feels miles away, but we've been promised results by then. I find myself wishing away these days and dreading hearing the cell ring. I'm sick with worry and consumed by concern for...everything. I doubt I will ever forget these handful of days while our family dangles in limbo.
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