Trach Baby: A Mother's Journey with her Child of Special Needs

Here is an excerpt from my book, "Trach Baby: A Mother’s Journey with her Child of Special Needs". I have been working on it for about 20 months....or not really working on it. I must admit that I really concentrated on putting this book together at first, and then I just got too busy. Great excuse, huh?!?! More like....I fizzled out. Okay, so I need to get it together and start focusing on getting this book finished and figuring out what to do with it next. Here is a sneak peek:

I had a funny feeling. It was the same feeling I’d had in my stomach all morning long. It was this nervous, “something just isn’t right” feeling. Fifteen minutes had gone by so we started thinking that things must have been fine. I reminded myself that this was a simple hernia surgery. Many newborns go through this same procedure. That is when I saw them. Two men in white coats, they were coming toward me carrying pamphlets and papers. That feeling in my stomach got heavier when I realized that one of them was Macy’s surgeon. This was the second time in 2 weeks, that I’ve had doctors come at me carrying pamphlets. I learned quickly this was not a good thing!

This can’t be happening. This is not happening. They are not coming for me. Those were the thoughts running through my head, but I was wrong. They were coming for me. They sat down and literally laid it on the table. I could not decipher the pictures. They sent a scope down to see why it had been so difficult to get the breathing tube down. That is when they saw that Macy had a narrowed trachea (airway). It was the size of a pinhole. The ENT, Dr. Miyamoto, stated that he thought about performing corrective surgery to make it larger today, but all the doctors in the room were against it. He said she was just too tiny, and had a heart defect that wasn’t repaired yet.

The next moment is one that I would like to say was a blur, but it wasn’t. I can remember every second of it. I can remember the feelings that were overwhelming my body. Dr. Miyamoto said, “We feel at this time that the best thing for Macy would be to perform a tracheotomy and put a trach in.”
“No, no, no.” I was not going to have that for my daughter. This was not happening. They directed us once again to the pictures they had taken. They pulled out information and diagrams. They must have thought this stuff would help, it just made matters worse.
I started sobbing. I told them that there must be another way. We were not letting her have a trach. I had experience with trachs. They were horrible. When I was in second grade, I became a buddy to a classmate who had one. I remembered all the things that came along with it, the noise, the suctioning, the constant coughing due to mucus, and the loss of ability to talk. Also, I associated it with someone who had severe defects and deformities. My baby didn’t, she was perfect, she was beautiful!

I cried and sobbed telling them that they needed to "fix" her, they had to do something else. I was in one of the best hospitals in the world! Do something! They kept insisting that this was the only way. They said she was stable at the moment, but they wanted us to sign the papers so they could put the trach in. I refused. I crossed my arms like a child and said they must do something else.

With tears in his eyes, knowing it was against my wishes, Jeremy signed those papers. I didn’t know what he was feeling, but my whole world, my life, my dream was gone. At that moment, I didn’t know if I could take anymore. I could feel my heart breaking; my body felt that it was shutting down. As those doctors walked away, I felt as if I wanted to chase them down, hit them, and hurt them. They had torn apart my life. I couldn’t look at Jeremy, nor did I want to. I was in my own world. I was done.