After finding out that Everly had CHARGE Syndrome I did what any person would do. I googled the crap out of “What is CHARGE Syndrome?” Essentially, it’s having specific medical anomalies. Each letter of CHARGE stands for something and you can be diagnosed either clinically or genetically. In Everly’s case it was genetic and she has letters C,H,A and E. She has a Coloboma in her left eye, she was born with Heart defects, Atresia choanae and Ear abnormalities and she also has the malacia, which would keep her on oxygen until she was 16 months.
The list of diagnosis were daunting and the statistic were scary with a only 70% surviving to five years old and the highest death rates are in the first year of life. I had no idea if she would survive. Burdened now by these statistic I’d keep them to myself. I didn’t want to worrying Aaron so instead I smiled trying to convince everyone including myself that everything was going to be OK but In the moments when I thought no one was looking my face said it all.
I wish i could say that this was the end of her diagnosis but I’d be dreaming.
At one month of age Evie had her first surgery. After discussing it with her doctors we decide it would be best if Evie had a procedure to have a G-Tube put in as she can’t swallow. This would allow us to give her food directly into the stomach rather than a tube that went through her mouth and down her throat. You would think that deciding whether or not to have a procedure done on your baby would be a hard decision but there was always one question that played through my mind like a broken record and still does today “What is her quality of life?” this question would be the driving force behind any decisions that we made.
The day before her procedure someone from palliative care came to speak to me. They asked me if I would fill out a Physician Orders for Life-Sustaining Treatment (POLST). Let me tell you something, shit does not get more real than when you’re discussing whether or not you want doctors to save your baby. Obviously, I want them to save our baby.
The day of the surgery I walked with Evie as far as they’d let me go and then I watched them take her away. Since Aaron had to work my mom came with me. We passed the time by going to the cafeteria and grabbing some coffee. The procedure didn’t take long just a couple of hours. They called me on my phone to let me know that she was back in the NICU. I rushed up to her. When I saw her I could see an immediate change. She was so bright eyed. I knew then that we had a made the right decision. For the first time in her life she could close her mouth completely; no longer was there a tube coming out of it.
It was such a relief to see how well she was doing and to be able to call Aaron and tell him that his baby girl came through with flying colors.
Like many days in the NICU this was a good day… little did we know we had 216 more to go.