THE PEDIATRIC WARD
Only few days
Actually few weeks
Gavage tube feedings
Pumping breast milk
All the time
OT trains me
OT is angel
More tests run
Prader-Willi syndrome?
Doctors think not
First test negative
Second test run
Luke with Dad
Luke needs Mom
Lots of visitors
Lots of gifts
So much support
Prayer, love, care
Amazing kindnesses shown
Ryan can’t nurse
Still can’t suck
NG tube feedings
Nurses who care
Nurses who teach
Nurses who love
I love nurses
Sometimes he’s awake
Sometimes more alert
Still precious baby
Surgery is possible
Surgery is scheduled
G tube in
Lets go home
Home please home
I lived for 27 days in Little Company of Mary Hospital with Ryan. It felt like an eternity to me. Waiting and watching. Questions and no answers.
The doctors offered theories as to why Ryan was struggling and weak. Maybe I got a virus when I was pregnant, and in 6 months he will be “normal?” Maybe he was premature and the dates were off? I knew they were not! Maybe he was SGA—small for his gestational age and eventually he would get bigger and stronger?
On Day 4, in walked Camille, Ryan’s new occupational therapist (OT). She was an angel. I think she floated in. She was this petite, Italian woman with dark hair and a big smile. She was given to Ryan, to us. Her job was to do exercises with Ryan’s lips, cheeks, mouth, and jaw in order to strengthen them to be able to suck. I grew in appreciation for the infinite number of things that must take place for a baby to be able to suck, a basic function of a newborn’s life.
As Camille pointed out to me that what Ryan’s body was NOT doing and what it SHOULD be doing, I lost it. I could not be strong mama anymore and suck it in. My baby was broken. This was when I first heard the term “hypotonia” which means low muscle tone. Hypotonia would become synonymous with Ryan as I explained his condition to EVERYONE.
I quickly had to give up the idea of ever being able to nurse Ryan. I made peace with it. I had to. I was a mom already, so I knew that bonding with my child went way beyond nursing. It did and it does. Camille reassured me of that.
The floodgates of love and support came raining down on us during this very difficult time. Gifts, food, calls, cards, prayers, babysitting. Visits from family, friends, new friends, old friends, pastors. Ryan was the first baby born in the new church we were a part of. Our new family there treated us with the utmost kindness and care. And they hardly knew us.
My best friend even flew into town to SLEEP in the hospital bed for me so I could be at home with Chris and Luke for a night. The next morning as we were driving back to the hospital, Luke,age 2, asked, “Do you really have to go back, Mama?” More tears. His tears. My tears.
Chris diagnosed Ryan with PRADER-WILLI SYNDROME.
He had been searching the glorious world wide web and found it. Ryan’s hypotonia, undescended testicles, and “failure to thrive” all directed to this diagnosis. But the doctors didn’t think he “looked’ like a baby with PWS. Chris asked for him to be tested anyways. The first test was negative. Chris insisted they run the second test, a DNA test. We needed a definitive answer.
Ryan’s little mouth was not getting stronger. We needed to go home. Luke needed me. Chris needed to go back to work. We needed to start our new life as parents to two delicious little boys. It was advised, absolutely necessary really, to give Ryan a “G-tube,” a feeding tube. Surgery was scheduled. Chris and I learned how to feed Ryan carefully. The nurses were extraordinary to our family throughout our stay, but they knew it was time, too.
Home please home. Yes, we were finally released to go home. But we still had no answers…
FOR MORE INFORMATION ON PRADER-WILLI SYNDROME, PLEASE GO TO http://www.pwcf.org/pages/Body.htm
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