Josiah's Journey

Josiah joined our family January 22, 2002.  He weighed 9 lbs. 6 oz. and was absolutely gorgeous.
He was completely perfect as far as I was concerned.

The Dr. however pointed out a large cataract on Josiah's left eye; a big white cloud-like formation covering his cornea.  A pediatric ophthalmalolgist confirmed it would need to be removed right away.

Since Josiah was unable to see with his left eye, both eyes needed to be covered until the cataract was removed. The concern was Josiah's right eye would work extra hard while the left one would do nothing.

Left untreated, eventually the left eye would atrophy. 

Until surgery, Josiah had to wear a patch over his eye at all times.  I was crushed.  I wanted desperately to be able to gaze into my newborn's eyes as I held him.

I wanted his siblings to bond with him and he with them.  I wanted Josiah's eyes to be 'normal'.  I didn't mind that he had Down Syndrome.  I did mind that he had a cataract and couldn't look at us.

That should have been the least of my worries.  Within about 10 days of his homecoming, Josiah would not wake to nurse.  He slept for unusually long stretches of time.  The typical tricks that rouse a sleeping baby had no effect on him. I would strip him down to his diaper, thump his feet, rub his back, put a cold wash cloth on him.  Nothing.  He barely budged. 

It was winter.  Some of us had colds and I feared Josiah was getting sick.  He only 'symptom' was non-stop sleeping.  I became concerned that he had failure to thrive syndrome. One morning the urine in his diaper had an orange tinge to it.  I called the pediatrician immediately.  He examined Josiah and seemed unconcerned.  I wanted to supplement with formula because I felt Josiah was maybe not getting enough nourishment.  He advised against it.  I showed him the orange tinge in Josiah's diaper and he responded that old urine tends to discolor sometimes.  Babies don't hold their urine.  I was becoming increasingly alarmed that something was wrong with my child.  We were sent home and told everything would be fine.  The next morning Josiah was still very lethargic.  Rick was leaving to go to work and found me sobbing.  I insisted that something be done to help our child.  I just knew the way mother's do that something wasn't right.  Rick called the pediatrician's office.  A nurse listened to his concerns, asked alot of questions and suggested  we take Josiah to the E.R. He was dehydrated. Hooked up to an  I.V. Josiah looked so very helpless.  Against the Dr.'s advice, I began to supplement his feedings with formula.  After 3 days we were able to go home.

Two days later however, we went back.  Josiah's condition had worsened.  We switched pediatricians, had Josiah examined and discovered he had  RSV (respiratory syncytial virus) a virus that causes infections of the lungs and respiratory tract.   Most likely he had contracted it while in the hospital for dehydration. 

This time around, we did not have a private room.  Josiah and I shared a large room with 2 other mothers and their babies. We each got a small corner of the room with a tiny crib, a rocking chair and a nightstand with a folded cot inside (my bed).  Josiah's cataract surgery had to be postponed.  His opthalmalogist prescribed a small gray fabric mask that covered both of Josiah's eyes.  He wanted to ensure Josiah's vision would not deteriate while waiting for him to recover.  So my precious little guy was completely blinded and vulnerable.  It broke my heart. 

The days passed in a blur.  I figured we'd be out in a few days.  That didn't happen.  Josiah wasn't improving.  Oh, they tried to send us home, prematurely. A few times they insisted our insurance would not cover another day.  They said Josiah was getting better and didn't need medical attention anymore.  I knew they were wrong.  I became irrate.  I recall telling a Dr. that if they tried to make us leave before my son was well they would find me dragging on the Dr.'s heels kicking and screaming on the way out the door. It was at that point that I went from simply being Josiah's mom to becoming his advocate.  I became powerful because he was powerless.  I became the voice he didn't have.  I  insisted he get the treatment he was entitled to. The next day we were transferred from that small county hospital to a large city hospital downtown. 

Josiah's tiny body was swaddled in a huge blanket, strapped in a much too large gurney with his little eyes completely covered, and hoisted into an ambulance.  We stayed there for 3 weeks.