Bouncing Baby Birthday Boy

Benaiah was the son of Jehoiada, the son of a valiant man from Kabzeel, who had done many deeds.  He had killed two lion-like heroes of Moab.  He also had gone down and killed a lion in the midst of a pit on a snowy day. 

And he killed an Egyptian, a spectacular man.  The Egyptian had a spear in his hand; so he went down to him with a staff, wrested the spear out of the Egyptian's hand, and killed him with his own spear.

These things Benaiah the son of Jehoiada did, and won a name among three mighty men... And David appointed him over his guard.

II Samuel 23:20-23

Beniah.  "The Lord has built."

Benjamin. "The son of my right hand."

New.  January 18, 2011.

He was born at 7:29 a.m.  One year ago.

What joy to finally meet the child I'd carried for 37 weeks.  Every one of my pregnancies seemed long. The last 17 weeks of this one had seemed like a lifetime.

We had found out at the 20 week ultrasound that something was different.  The tech had confirmed our guesses - boy number four - but then she went silent.  She wouldn't let us leave without seeing the doctor.  

"Spina Bifida."  They said.  And from that moment on, the phrase was added to our vernacular language.     

"He has a 'biffed-up spine.'" My husband would try to explain it in even more basic terms, when people asked.  His spinal column - the part that forms around 28-30 days after conception, before I had confirmed I was even pregnant - never closed all the way.  

We knew he was perfectly formed by the Lord, just like all children.  But it was hard to accept.

On ultrasound, we could see the bubble on his lower back where the spinal cord stuck out.  There was extra fluid - or too little brain - at the top of the spinal column.  His right foot was bent at a funny angle; it looked like a Charlie Brown foot on the grainy black and white silent movies transmitted from my growing abdomen.  

We went home and started doing our homework.  Best case, it might not actually affect him at all.  Worst case, it would affect the parts of his brain that would tell him to breathe and to swallow; he could also be paralyzed, mentally handicapped, there could be a myriad of associated major midline deformities with his heart, cleft palate, seizures, blindness.  The list went on.  We wouldn't know till he was born - and later.

So we waited.  We went to ultrasounds.  We studied.  We met the specialists.  We waited.  

Finally, it was time.  My other three children were natural births, without medicine - waiting at home till I was hanging onto the furniture before taking a quick trip to the hospital.  This one was tediously planned to allow every specialist to be present for the c-section which would protect his delicate exposed spine as he made his debut into the cold world.

They did an amniocentesis the day before our scheduled cesarean birth to check the maturity of his lungs.  (Not the most pleasant moment of my life.)

The next day, amidst the blur of blue scrubs, we finally heard him breathe for the first time.  Loudly.  On his own.  Thank God.  My midwife managed to take one picture of his back before the neonatologist deftly wrapped it.  I saw it one other time before his neurosurgeon closed it up.  Thin, translucent, fragile film covering the bubble of spinal cord and fluid visible within.  I was glad in that moment that I was experiencing the ache of the c-section cut, that I had known before he was due, that we could plan this and protect what looked surely like it would have burst open and killed him had he taken the trek through the birth canal.

Prepped for back surgery.

The next day, they closed the bubble.  Two weeks later, when we noticed fluid dripping from the scar on his back, he had brain surgery to place a shunt.  The fluid in his spinal column was building up and putting pressure on his back.  The neurosurgeon put a tube from his head into his abdomen where the excess fluid could be absorbed.  Then we brought him home and started getting on with living.       

   

After back surgery in the NICU.

Daddy and all his boys finally home together.

Henry (1 and 1/2) and Ben (2 weeks old.)

That is history.  His story.  Chapter one.  I

We will celebrate his first birthday today.  He doesn't need many presents; with three brothers, he has no lack of hand-me-down toys or clothes.  (He assumes this is normal; don't tell him otherwise!)  He will get a cake to smear all over his face, grandma kisses, pictures, the works.  

We still don't know when - or if - he will walk.  Or if he will ever stop wearing diapers.  Or draw a stick figure.  But he breathes.  He nurses.  He eats in a way that makes me worry about future grocery bills.  He laughs and inhales the frenetic attention of his brothers.  He imitates their chatter.  He rolls until he gets stuck under the furniture, squealing until he is rescued.  He wriggles to music.  There will be many doctor visits in the future; more surgeries, more therapy, more hard stuff.

But today, he is one year old.  He is perfect. 

Happy birthday, Beniah Benjamin!

Me and Ben in early December 2011.

Ben today - with breakfast.