in the neonatal intensive care unit for 2 and a half months.
He underwent a few other surgeries for many central lines
and a gastronomy tube. Every day we would sit by his bed,
touch his hands, talk to him, and wish we were taking him
home. Every day we would leave, empty handed. Our baby would
be lying there, in a tiny plastic crib, in a room full of
We were not given much hope of him ever coming home. So,
when he was discharged at 2 and half months, I was ecstatic!
I rode next to my little Othello on the car trip home. I stared
at his precious face and I felt tears welling in my eyes.
Othello was already jaundiced when he was released. His eyes
were tinted yellow and his skin matched. His liver was already
feeling the effects of the TPN. This necessary evil that was
killing him was keeping him alive!
Day after day Darin and I followed the same routines for
Othello. We had mastered feeding Tubes, TPN preparation, and
central line dressing changes, among many other things. I
became versed in medical terminology that I would rather not
Othello was oblivious. He had only known this life. A life
hooked up to IV poles and being poked at by men and women
in white coats. He vomited daily since his little body could
not handle the 5 ml an hour of formula he was g-tube fed.
His bottom was always broken down from the constant diarrhoea.
But, he rarely cried.
Othello would smile and giggle. He loved to be held and sung
to. Othello even fell asleep with me nearly every night. I
would read him a bed time story and he would nuzzle up in
my arms and fall to sleep. I affectionately named him Mello
Yellow Othello, because of his laid back demeanor and yellow
At four months old, Othello was put on "the list".
His liver was already failing, his spleen enlarging, and he
was not gaining weight as well as the doctors would have liked.
So, we waited. Typically the wait is 6 months, we were told.
But, since Othello was so small, they wanted the donor to
be a newborn. To make it even more difficult to find a match
he needed 5 organs! The odds were stacked against him.
We rarely left the house, unless it was for a doctor visit
or hospital stay. I kept him isolated from people. I was scared
he would catch a bug and get more ill than he was already.
I did not want to add any pain or discomfort to his life.
Othello returned to the pediatric ICU when he was 8 months
old. He was vomiting blood, needing transfusions nearly every
other day, and not doing well at all. When Othello was admitted
to the ICU, he was placed at the top of the list. He was placed
as a status one on the UNOS list. The transplant coordinator
said it is usually a week or two once they get this high on
Othello had more waiting to do though. He waited and deteriorated.
His breathing became labored. His giggling subsided. His smiles
were few and far between. A month and a half after being admitted
to the PICU, it was time to fly to the transplant center,
6 hours away, to wait there.
Othello and I got on a plane and waited to land in Miami.
It is only an hour and a half flight in a prop plane, but
it was a long hour and a half.
Othello waited in the PMSCU at Jackson Memorial. We watched
him go from worse to even worse. I did not expect he could
get any less like himself. His belly ballooned even more.
His spleen and liver were so enlarged and hard that he looked
as if he had a Buddha belly.