We left our warm and cozy home promptly at 6 am. I needed to
hit up a Starbucks before this day was allowed to begin. It was dark and rainy;
a dreary day in all. I remained in good spirits. I was trying so hard to stay
calm and brave so that Ellie would not sense any of my fears.
Check-in began promptly at 7:15am. We met with the cardiac anesthesiologist,
surgeon and several others to discuss the procedure. We walked into the pre-op
room to prepare. I changed her into her little hospital gown as she looked
around the room taking everything in.
Her beautiful little belly was pure and untouched, just as it
was meant to be. I wanted to savor those last few moments of how her skin felt as
I rubbed her tummy and blew raspberries. The way it looked, it was a perfect imperfection.
It is who she is and a part of me died inside to change her.
I can’t imagine what her thoughts must have been: the bright
lights, the smell of rubbing alcohol and sanitizer and the cold sterile room
with unfamiliar people. Swimming in her huge one-size-fits-all hospital clothes
she explored the crinkly texture of the paper with her feet.
My heart beats faster and harder with every tick of the clock.
The procedure was all set to begin and I knew our precious time together was coming
to an end.
The nurse came in. It was time. I handed one of my four reasons
for existence into this stranger’s arms, kissed her and watched as they walked
away and out of my sight. I would never see her again the way I had left her.
She would be forever scarred from this. Even with the logical understanding
that this is best for her health…it didn’t make my heart break with any less
pain.
It was so somber in the waiting room, full of families anticipating
news about their children, each in the hands of well-educated strangers whom we
have all entrusted with our most precious.
I watched the monitor for how things were going with what
was so inconsequentially referred to as patient number #183471. I wanted to
shout, “That is MY child ELLIE WRIGHT! A miracle straight from God, gifted to
us to fill our hearts with more love than we can hold! A blessing to all who
meet her!”
And so I continued to wait…
Due to her heart defect she required oxygen. The nurse taped
it to my shoulder so I could continue to hold her. I carried her down the long
and windy hallways slowly as the large gurney overflowing with cords, monitors,
tanks and other attachments followed until we reached her new room for the next
few days.
We sat and rocked the remainder of the day.
Doctors and nurses were constantly coming in and out of the
room. Monitors were beeping and vitals were recorded. Everything seemed to be
going according to plan. Even our wonderful GI doctor came to visit Ellie at
9:30 at night to let us know he would be available if we needed anything. Now
all we were waiting for was time to pass.
The next day, Ellie was beginning to act more and more like
herself. She had her first tube feeding and tolerated it. She showed some interest
in her toys and even had her first sponge bath.
Two long and sleepless days later, it was finally time to
discuss the conclusion of our visit. The
surgeon on-call took out her stitches and the nurse began our discharge
paperwork.
About 20 minutes later, Ellie’s G-tube started bleeding. Our
GI doctor came in the room and when I asked if this was normal, he looked up at
me and shook his head. Panic was palpable from the nurses and doctors running
in and out of the room as Ellie’s heart rate began to climb. They needed to run more labs. The thought of
my child being poked again was unfathomable. She had already been through so much.
Fortunately, IV therapy was able to take blood from the IV she already had in
her. That was the first blood draw Ellie didn’t scream through. Four and a half
hours later the bleeding stopped thanks to the persistence of our medical team.
The labs were abnormal but nothing that required us to stay there, but definitely
something we will need to follow up with.
Finally, it was time to go home and begin our new way of
eating…
