The decision....

This is not how it is supposed to be! I am not supposed to have to make this decision! Parents are not supposed to have to choose life or death, they are just not! I thought about how much I wanted her to live. That was not a possibility for me. My baby's fate had already been decided, now it was my duty as a mother to do the very best that I could to give Rabecca the best life possible. It seemed like an eternity of pondering and wondering about what to do. It was in reality only a short time there with the doctors. I tried to be strong and not cry, but that was nearly impossible to do. I looked up form the desk and asked Joey what did he think we should do. He was wonderful. He looked at me and said that he would go along with whatever decision that I made because he had complete faith that I would do what was right for our little girl. I tearfully looked at Dr. Clark and said in almost a whisper "just comfort care, I want her time here no matter how short be as peaceful and beautiful as possible. I don't want her to know what pain is. I only want her surrounded by love". That was in it's self the hardest words that I have ever had to say in my life. Was I doing the right thing? My heart said yes, but my mind began racing around all the what ifs. We left the hospital and went home to begin a plan.
"What did I just do Joey? I chose the fate of our child, and I chose to do nothing to save her!" What kind of mother am I? What if I made the wrong decision? What if we could fix her and I never even gave it a shot? Those questions ran through my mind constantly. I had to find out everything that I possibly could about T18 babies. I researched to the point that I was answering questions that some of the OB doctors had. You see this defect that she has happens to 1 in every 3 to 4 thousand pregnancies. Nearly all of them wind up terminating themselves by the time they are 24 or so weeks along. Very few are born alive. In the ones that are born alive less than 30% live for 1 week and less than 10% live to be a year old. Their 18th chromosome has a third part as to where you should only have a pair. It causes their bodies to go haywire. Everything begins to shut down and there is no cure for it. It is a constant waiting game. You never know what they are going tell you each time you go to the doctor. It is truly stressful. The more I learned the easier it was to accept my decision for comfort care for her. I began to think about myself. Would I want to be hooked up to tubes and machines to be kept alive? No I wouldn't. To me it was not going to be fair to her. She deserves the very best that I can give her while she is here. It would be selfish of me to put her through all of the pain and aggravation of having her be poked and prodded on just so I could maybe squeeze another hour in with her. She wouldn't be able to feel the touch of her mommie and daddy. I wouldn't be able to kiss her and hold her when I wanted. She would just be there in an incubator........ waiting. NO! I made a promise to her the day they told me she was sick. I promised to her that no matter what I would never let anyone or anything hurt her. Her life was to be filled with love and that was one promise that I intended to keep no matter what. I still to this day second guess myself on that decision. I still think "what if...", but I have to remember that she never knew loneliness, all she felt was the love of her family. I did the right thing.
I had no one to talk to about all of this. Sure there was my family and my extended church family that would stop and talk to me at the drop of a hat, but there was no one who completely understood. No one who had been through this kind of thing. Amazingly again Dr. Clark stepped in at just the right time. I was due in 10 weeks and no where to turn, when he called me and gave me the phone # of someone who would put me in touch with perinatal hospice. That is a God sent service! I called them and immediately met with their director Tammy Tate. She made time for me that very day. No more waiting for someone to talk to! I went into her office and immediately felt a connection with her. She handed me some tissue put her hand on my back and said "it's okay. I'm here to help." We sat in her office and I told her my story and I sobbed and sobbed. She very gently told me that she understood and gave me a packet of information and told me to look at it when I was ready sometime over the weekend and that she would see me again on Monday. I went home and opened the packet, there in front of me was everything that I could ever need to begin a plan for what was coming. I couldn't have asked for anything more. It was more than I ever expected. I began to feel better immediately.