JUNE 27, 2003
It’s a girl
No, no ,no
It’s a boy
Ryan Bradley Patay
He doesn’t cry
Boy parts wrong
He doesn’t eat
He can’t suck
Mom, Dad happy
Mom, Dad worried
So many tests
Don’t have diagnosis
Transferred to “Peds”
Mom with Ryan
In walks Camille
Camille the OT
I break down
Tears, worries, tears
What is happening
Why why why
Something’s very wrong
My baby’s broken
No one knows
No answers yet
Poor Baby Ryan
And poor me
He didn’t cry. Hardly at all. Ever. Ryan didn’t cry pretty much his whole first year of life.
When Ryan first came out of my body after two pushes and a picture-perfect delivery, and a picture-perfect pregnancy, mind you, what struck me was he let out barely a cry. I thought I won the lottery and got an “easy baby,” a mellow newborn. This was quite a change from Luke, who got kicked out of the nursery as a newborn because he had his days and nights mixed up, and my darn nurse was not too forgiving about that.
The other striking issue at the moment of birth was that his testicles were not descended. Both. Not just one, which is very common, my mother reassured me. I thought, “hmm???” but really was not freaked out. His respiration rate was high but otherwise he seemed perfect and tiny and beautiful to me. I was in love with my second son. Ryan Bradley Patay, his middle name given to him from Chris’ twin brother and best friend.
The first 24 hours for me was a little bit of a blur of post partum joy and some concern but not all out worry about my newborn. NOT until the doctors and nurses said a bunch of tests needed to be run. They ordered an ultrasound of his abdomen “to rule out if he had a uterus,” (WHAT??) and a brain scan and lots of blood tests. That was Day 2.
Ryan was not waking or crying for food, nor could he suck very well. Day 1 this didn’t stand out to me–again, I thought I had a mellow, sleepy newborn. But by Day 2, the nurses got more insistent I try waking him and stirring him, try a bottle of formula and see if he could take an ounce, even a sip. He could not.
Next they told me I would be discharged and Ryan would not. Because he was showing a “failure to thrive” ( a term new to me), he would go to the Pediatric Ward (“Peds”) for a few days. He was to have some tube feedings, and work with an OT (occupational therapist) to wake up Ryan’s mouth. Just a few days, right? And then we could gohome??
This was not the case I would soon discover…
FOR MORE INFORMATION ON PRADER-WILLI SYNDROME, PLEASE GO TO http://www.pwcf.org/pages/Body.htm
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