The Surgery

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…