"It's your dark-haired son," said my midwife. I told her I had been dreaming of a dark-haired son.
"I see shoulders, chest... You're doing great," Mr. Graff encouraged. At this point in labor, I needed encouragement. My 10 lb. 5 oz. was about half-way out and I thought if he got stuck, I was done for. He didn't. He came out in a couple pushes.
We waited for his first breaths. They sounded wet; he couldn't clear the amniotic fluid from his lungs. my midwife started Joseph on oxygen. She told me hold him close and tell him to breathe.
"Don't push out your placenta!"
"I'm not," I said. Out it came.
It soon became clear to us that Joseph needed more care than we could give him at home.
"Mr. Graff, call 911."
Twenty minutes after he was born, Joseph was taken out of our home on a cookie sheet to the ambulance waiting outside and driven to the local hospital. A few hours later, Mr. Graff called to tell us his weight and length and ... that Joseph had a cleft in his soft palate.
About 1 in 700 babies in the United States are born with clefts.
Later that day, I headed down to the hospital to see Joseph. He was lying on his stomach so he could breathe, hooked up to several machines and monitors.
"I think he has Pierre Robin sequence," the nurse told us. "Go look up information and pick out the best hospital for him to be at." She urged us to get informed.
About 1 in 14,000 babies is born with Pierre Robin sequence. It's believed that early during gestation, about 6-8 weeks, the baby's jaw gets stuck in his collarbone. Then, around 12-14 weeks, when the baby starts moving, the jaw becomes un-stuck, but the delay in development never catches up. The small jaw prevents the tongue from coming down properly so the soft palate does not fuse, resulting in a cleft. Pierre Robin babies present with a micrognathia (small jaw), U-shaped cleft of the soft palate (Joseph's is actually almond shaped), and a tongue that blocks the airway.
When I look at these pictures, I think about how little we knew. We thought Joe would only be in the hospital for a couple of days because we still had no idea how serious this was.
Icie, the picture of you and Joseph is so very touching and beautiful.
ReplyDeleteMy only son was born with some complications as well, but we were just as naive as you were. He hasn't had surgeries, but several diagnoses have meant durable medical equipment in the house, visits to both medical and behavioral specialists, and other interventions that we've had to learn over a period of... well, he's turning 10 soon, and the journey isn't nearly over.
But then he looks at us with huge blue eyes and tells a joke, or falls asleep in a pile of blankets with his mouth open on a weekend, or he got baptized, and it's suddenly completely worth everything and more.
Sometimes it feels like toil and other times it feels like challenging purpose. I know that you are a wonderful mother and that the Lord is giving you everything you need to grow in the ways He has planned for you. ((hug))
Andrea, you have such a way with words--what a gift! I feel like I understand what you are saying. Thank you for your compliments.
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