Me: "I was diagnosed a number of years ago with Behcet's disease, but have been asymptomatic for years. [Pause] Because you can never have too many exceedingly rare diseases in one family."
[Laughter}
I made a joke today. And was able to laugh about it. Dark humor, to be sure, but still real laughter. Maybe things are getting better?
Unfortunately, things didn't start off well in the NICU this morning. When we got there, the speech therapist was working with Harper. In good news, she seemed to be doing well in successfully sucking, and seemed particularly interested in fingers and pacifiers dipped in milk.
However, when handed to me, she immediately freaked out and started de-satting like mad. Mom that I am, I began gently bouncing/rocking her and shushing. I got a gentle reprimand from the speech therapist - who, don't get me wrong, I really like - and immediately burst into tears. Apparently, I can't even "mom" Harper right!
Taking a break in the sunshine outside, I began to imagine an entire summer of endless days, alone with Harper in the NICU. And was overwhelmed with feelings of depression and hopelessness.
It began to get a little better after that. Look who we captured on film peeking at us through her finally opening eyes!
And it seemed like sometimes, when we held her upright or cuddled with her, her stats would improve some, although still seldom getting higher than 93.
Miss Harper even enjoyed some skin time with Daddy.
Then, this afternoon, we had a "Family Meeting" with our neonatologist, geneticist, and social worker. No surprises, but they gently brought up that given the serious anatomical abnormalities Harper presents and her very, very low cholesterol, her prognosis for survival was not very good. They're not sure she would be able to be safely anesthetized for surgery, perhaps wouldn't even survive placement of a g-tube. They think her continuous respiratory issues, as indicated by the constant de-satting, are a very bad sign.
Despite this litany of bad news, it was actually a very good meeting, even as I'm still sorting through my feelings about it. We were able to calmly discuss our options for what happens next, noting that we weren't interested in putting Harper on a respirator or long-term life support, given the low quality of life she faces, and that we weren't interested in putting her through a host of intensive surgeries if the chance of surviving them really seemed low. We talked about palliative care. We talked about where we go if little Miss Harper surprises us and actually improves. We couldn't have been more impressed with how supportive and wonderful the entire team was - none of us want to see our little bean suffer. They, in turn, seem very impressed with how in sync Lou and I are, and how well informed. We walked away from the discussion feeling kind of hopeful and relieved for the first time since she was born.
Which, in many ways, is an awful feeling when the whole conversation was essentially about our baby dying.
Afterwards, we held our Harper Bean, kissed her head, and watched her oxygen saturation rise as she sat with her Mommy and Daddy.
"Say Happy Birthday to Shea for us!", the NICU nurses call as we left.
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