Koby's story part II

a continuation of THIS post...

With in moments the mood in the room changed. Things got much quieter,and all the people were just gone and so was my baby. Really without much explanation, Koby had been whisked away to the nursery for the once over by the doctor. I was moved over to the postpartum side of the hall and,Chris returned.He said they had moved Koby into the private part of the nursery and he couldn't see him from the window anymore.It was then that I knew something wasn't right. I had seen babies born. I had hospital experience, and this wasn't part of any "normal" birth I had experienced.
As the minutes passed, Chris and I mulled over the thoughts of what is going on, it must be bad,No everything is fine, and back to what is going on,cyclic as if the thoughts were on merry-go-round. As the first hour post-birth was coming to a close, a knock at the door was a welcomed interruption to the inner chaos we were experiencing.However the look on the face that was behind that door, sent us reeling once again. You know the look I am talking about. For those of you that have kids, imagine that face that your kids have when they have to tell you something they know will disappoint you,yet there is NO way around telling you because if you find out later it will only be worse. You know that one,right? Well in this instance, I saw this Dr. as that child. I could see the deep seeded concern in the depth of his pupils. The disappointment he was carrying for us in his rigid posture and half-hearted smile. He introduced himself,and congratulated us. He said Koby is having trouble breathing,which isn't uncommon. Okay, we though,go on.He said that he heard a heart murmur and is ordering an Echo for the morning to see if we can determine whether the murmur is cause for concern or not.Okay,that doesn't sound good we thought,but it doesn't seem urgent either,continue. He said he will most likely be in the vent hood to help him breath for another 24 hours at least.Bummer we thought,but at least that was it,nothing sounded unmanageable,not ideal but not impossible. "Is that it?",Chris asked? Silence. WE turned to the Dr. His face grew more serious,and he sat down on the edge of my bed,and grabbed my leg.I am not sure if it was to comfort me or to brace himself. "I have decided to run some blood work.Koby has a few of the physical markers for Down syndrome,and I just want to run the test to see if that is what is going on. I am sorry to be the one to have to tell you this." And there it was...the most deafening words I had ever heard in my life! The Dr. quickly left,and Chris and I literally couldn' t move! I don't remember what we said to each other. I just remember feeling like I had lost my child. The child I had dreamed of since I was young. The child I had been planning for for 9 months. The child that Chris and I had playfully argued about, whether he would be the class clown, or the Class president. That child was gone. That child never existed, though in my mind and heart THAT is the child I had loved and longed for. I went from feeling so sad from that Loss, to feeling Angry. Angry at Myself. Angry at Chris. Angry at that Dr. Angry at the World. Because truth be told, there was NO one or Nothing to be mad at! Anger lingered over into Denial,which led to Confusion,and finally I found myself just full of worry. Worry for him, worried for me, and worried for what the future would hold.
Later that day as word got out of our arrival, people began to call, and come by. Usually company is welcome and expected after a baby is born, but his was different. When people would ask me about Koby, I felt like saying,"which Koby,the one I was pregnant with or the one with Down syndrome? The one I carried with me for 9 months, or the one I can't hold at all now? The one that was supposed to expand our family or the one I feel will tear us apart? Needless to say, this was an extremely difficult time in my life. I felt things I never thought I would feel. As real and as raw as the emotion is, I feel the need to be honest, in hopes that someone will understand the reality,and the journey both good and bad and how possible it all is. Looking back on that day,I laugh and cry. I laugh because it is truly funny to me that I was so upset, and worried.I cry because I missed out on one of the best times of my life.
The next day was filled with a different light for me. I woke up with a feeling of positivity and happiness. I went and saw Koby in the Nursery. I touched him and rubbed his hair, and fed him. He looked normal to me. He didn't look like he had Down syndrome. He looked like his Daddy. He seemed like any other baby I had ever seen. This wasn't so scary right? And the Dr was probably wrong.I thought, it's probably just the Dr being so careful not to get sued or something. Only being able to stand for short periods of time, I headed back to my room, and waited for the results from Koby's Echo. In the meantime, my Dad brought Chris and I lunch.We had a few other visitors, and his birth certificate came to be filled out.As the day passed, with every knock I secretly hoped that it both was and wasn't the Dr with the results about our new baby's heart. But knock after knock no one was donning a white coat and stethoscope.
Shortly after 4pm, there was a Knock.My heart sank.Call it mothers instinct,but I knew it was him. "Come in" we called to him. He slowly opened the door,and I greeted him with the best smile I could muster up. However, staring me back in the face was that look,that same look from just 24 hours earlier, only this time it was worse!
To be continued...


This is a picture we took of Koby while he was in the vent hood. You can't take them right in the level two because of the other babies, but we took it through the glass window.