She Runs A Good Race

mothering is a marathon

Ryan’s Birth Story (Part 2)

on April 10, 2012


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…


One response to “Ryan’s Birth Story (Part 2)

  1. Liz says:

    Another great addition Jess. Just gave your blog addres to a new mom struggling with a sick little newborn with no answers. I assured her she would find strength and peace from another great mom’s journey. The timing is perfect for you blog! Thank you for sharing. Many many will find comfort, strength, and understanding from your beautiful entries.

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