Midlothian, Virginia
We did not know beforehand that Cole had DS. My AFP came back with suspicion but we opted not to do an amnio. Neither me nor my husband wanted to make any drastic decisions. Of course we wondered if the baby had it or not through the rest of my pregnancy. All ultrasounds came back "normal", but of course they're not 100% accurate.
On October 26, 1998, Cole decided that he wanted to meet all of us about three weeks early. He was born with about a pound and a half of fluid in him. He turned blue shortly after birth and was whisked away to NICU for further observation. The first words out of mouth were "Does he have Down Syndrome?" My OB/GYN said, "He is a beautiful baby." She never did look me in the eye. Somehow I knew. My husband fell in love with Cole immediately. I guess the shock of having him early and the nagging feeling that things were'nt quite right made me feel numb.
In NICU, my first good look at him broke my heart. He was swelling from all the fluid and the skin from his little arms were bulging over the ID band and the tape that held his IV in place. He had a feeding tube going down his nose and an O2 tent over his face. He was screaming his head off which the nurse said he had been doing for quite some time and she could not calm him down. I went over to the isolette and lifted the O2 tent from over his face and I whispered, "Shh, Coleman, mama is here." He immediately stopped crying and laid there peacefully holding my finger. I knew then that I needed to be with him as much as possible because he recognized my voice and it calmed him. He did well and was able to come home on Halloween. When I came in with Cole, our older son, Parker, came to sit next to me on the couch to get a good look at his new brother. Then he looked at me and said, "Mom, can I lick him?" Hey, I figured let the bonding process begin. He licked the whole top of that baby's head. You know, the two have been inseperable ever since! Thank goodness!
For me, the bonding process took longer. We found out when Cole was 3 days old that he had DS. We felt blessed that he did not have any heart or gastro problems. He was healthy. The news of his diagnosis rocked me. I grieved for the child I thought he would never be. I blamed myself. In the lowest point of my devastation, my husband asked me a question that really brought everything into perspective for me. He asked, "Do you feel more sorry for yourself or for Cole?" Of course, I was feeling sorry for myself. I knew then that through the fog of my grief that I had to be there for Cole and Parker 100%. It wasn't until Cole was five weeks old that I felt anything for him. I was just going through the motions of taking care of him. Then one day I was holding him in my arms as he was sleeping and I looked at him. He had awakened, and was looking at me with such maturity and as if to be saying, "Mom, everything will be okay." It was at that moment that I allowed myself to feel the love I had had for him all along but was afraid to experience. He has truly been a light in my life.
We cannot believe that he will be one so soon. What a year! Cole began Nutrivene-D at the age of 5 months. He is also on DHA, Efalex, good bacteria and Piracetam. The therapists wanted to come once every other week, but I felt that that was not enough, so I began my search on the internet and found the site www.NACD.org. Bob Doman, the founder, evaluated Cole for the first time in August and wrote up a program that I follow at home. Cole has done well and I truly feel involved in(and repsonsible for)his development. We go back for our first re-evaluation in December. My husband and I have both said that we wish we knew then what we know now. I know that the circumstances surrounding Cole's birth would not have been so devastating. What a gift he is to our family! I apologize for this being so long but it has been good therapy for me. It has brought back some unpleasant and some very beautiful memories of the past year. I look forward to "meeting" everyone on the listserv.
In NICU, my first good look at him broke my heart. He was swelling from all the fluid and the skin from his little arms were bulging over the ID band and the tape that held his IV in place. He had a feeding tube going down his nose and an O2 tent over his face. He was screaming his head off which the nurse said he had been doing for quite some time and she could not calm him down. I went over to the isolette and lifted the O2 tent from over his face and I whispered, "Shh, Coleman, mama is here." He immediately stopped crying and laid there peacefully holding my finger. I knew then that I needed to be with him as much as possible because he recognized my voice and it calmed him. He did well and was able to come home on Halloween. When I came in with Cole, our older son, Parker, came to sit next to me on the couch to get a good look at his new brother. Then he looked at me and said, "Mom, can I lick him?" Hey, I figured let the bonding process begin. He licked the whole top of that baby's head. You know, the two have been inseperable ever since! Thank goodness!
For me, the bonding process took longer. We found out when Cole was 3 days old that he had DS. We felt blessed that he did not have any heart or gastro problems. He was healthy. The news of his diagnosis rocked me. I grieved for the child I thought he would never be. I blamed myself. In the lowest point of my devastation, my husband asked me a question that really brought everything into perspective for me. He asked, "Do you feel more sorry for yourself or for Cole?" Of course, I was feeling sorry for myself. I knew then that through the fog of my grief that I had to be there for Cole and Parker 100%. It wasn't until Cole was five weeks old that I felt anything for him. I was just going through the motions of taking care of him. Then one day I was holding him in my arms as he was sleeping and I looked at him. He had awakened, and was looking at me with such maturity and as if to be saying, "Mom, everything will be okay." It was at that moment that I allowed myself to feel the love I had had for him all along but was afraid to experience. He has truly been a light in my life.
We cannot believe that he will be one so soon. What a year! Cole began Nutrivene-D at the age of 5 months. He is also on DHA, Efalex, good bacteria and Piracetam. The therapists wanted to come once every other week, but I felt that that was not enough, so I began my search on the internet and found the site www.NACD.org. Bob Doman, the founder, evaluated Cole for the first time in August and wrote up a program that I follow at home. Cole has done well and I truly feel involved in(and repsonsible for)his development. We go back for our first re-evaluation in December. My husband and I have both said that we wish we knew then what we know now. I know that the circumstances surrounding Cole's birth would not have been so devastating. What a gift he is to our family! I apologize for this being so long but it has been good therapy for me. It has brought back some unpleasant and some very beautiful memories of the past year. I look forward to "meeting" everyone on the listserv.
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