Tuttle, Oklahoma
Hello, my name is Becky. I am the very lucky person who is blessed with two angels that call me "Mom". I am the mother of Johnathan, 10 years old, and Joey, 13 months (mds). My Johnathan is into baseball. He is the second baseman for the Newcastle Racer's little league team. He wants to be a pitcher, also. My Joey is into EVERYTHING!! We have a difficult time keeping up with him, if you blink - he's getting into something else!!
When I was pregnant with Joey, I declined to take the test that they do to determine if it is possible for your baby to have Down Syndrome. I knew it would not matter. When Joey arrived, without much warning (only 3 hours of labor - only 15 minutes of major pain!!), he was beautiful - perfect in every way! That night, the pediatrician told us that she thought that we should have Joey tested because he has a couple of features that only slightly resemble Down Syndrome, but that she did not believe it really would turn out to be. I immediately started to cry. I could not believe my ears! Could she not see how perfect he was? What if he does have Down Syndrome? What do we do about it? Is that a bad thing? Does that mean that he is doomed to be unhappy? Why does this sound like bad news?
I pondered these thoughts for a couple of hours and concluded that he was still perfect. No one knows exactly what they are getting anyway - smart, athletic, musical, fat, skinny, short, tall - but we know that all babies are perfect. We usually learn more from them than we ever imagined possible. I talked it over with Joey - he didn't say much, he was asleep - and we decided to say "Okay, so he may have Down Syndrome. We are still alive and in love!" We went home the next night.
Before we got the results of the blood test back, we had a couple of problems: Joey didn't eat much. And when he did eat, he spit up. When he was 4 days old, I called his doctor - am I doing something wrong? She calmed me down, reminded me that we have a check up the next day with the hospital nurse. Maybe Joey was just a "spitter".
When we walked into the hospital the next day, we could see that Joey was Jaundice. Johnathan was Jaundice when he was a baby - he had to stay in the hospital until he was 6 days old, but it all turned out just fine. Joey did not look as yellow as Johnathan had. When the nurse looked at him, she was not overly concerned. We did have blood drawn to check his biliruben level. The rest of appointment went fine, his weight was Okay and so was everything else.
When I walked into my house twenty-five minutes later, the phone was ringing. The nurse said that Joey's biliruben was very high (almost 20) and we needed to come back to the hospital immediately. Twenty minutes later, we arrived and had more blood taken and were immediately put in a room. Joey was put under the Bili-lights. We got the second blood test back and his biliruben was 29 (dr. said over 30 could cause brain damage). He stayed under the lights all day and all night.
The lights only helped a little bit. They were not bringing the numbers down as well as they should. We had another test and x-rays. He had a blocked intestine and would need surgery immediately. I was so scared for him! He's to little for all of this stress! He had surgery when he was 6 days old. I was so afraid that he would not be okay. He was in the hospital for 11 more days. He had trouble getting off the ventilator-when they took it out, they wanted to put it back in right away. They let me hold him first. He started getting better immediately and they did not put the ventilator back in. While I had been by his side constantly, I could not hold him until then. Now he was getting better. We finally got to go home!!
Two days later, we got the call from his pediatrician - Joey has Down Syndrome. She did not tell us sooner because she felt we had enough to deal with. That did not seem like such a scary thing anymore! We had a few more tests, saw seven doctors, and we are very happy to say that we should not have any more problems - thank goodness!!
We found out that he has about 50% of his blood cells with an affected chromosome. What can we expect from this? We know that we will have love and happiness. We know that we will have hard times and heartaches. We know that because we are parents. We always hope for the best-especially for our children.
I pondered these thoughts for a couple of hours and concluded that he was still perfect. No one knows exactly what they are getting anyway - smart, athletic, musical, fat, skinny, short, tall - but we know that all babies are perfect. We usually learn more from them than we ever imagined possible. I talked it over with Joey - he didn't say much, he was asleep - and we decided to say "Okay, so he may have Down Syndrome. We are still alive and in love!" We went home the next night.
Before we got the results of the blood test back, we had a couple of problems: Joey didn't eat much. And when he did eat, he spit up. When he was 4 days old, I called his doctor - am I doing something wrong? She calmed me down, reminded me that we have a check up the next day with the hospital nurse. Maybe Joey was just a "spitter".
When we walked into the hospital the next day, we could see that Joey was Jaundice. Johnathan was Jaundice when he was a baby - he had to stay in the hospital until he was 6 days old, but it all turned out just fine. Joey did not look as yellow as Johnathan had. When the nurse looked at him, she was not overly concerned. We did have blood drawn to check his biliruben level. The rest of appointment went fine, his weight was Okay and so was everything else.
When I walked into my house twenty-five minutes later, the phone was ringing. The nurse said that Joey's biliruben was very high (almost 20) and we needed to come back to the hospital immediately. Twenty minutes later, we arrived and had more blood taken and were immediately put in a room. Joey was put under the Bili-lights. We got the second blood test back and his biliruben was 29 (dr. said over 30 could cause brain damage). He stayed under the lights all day and all night.
The lights only helped a little bit. They were not bringing the numbers down as well as they should. We had another test and x-rays. He had a blocked intestine and would need surgery immediately. I was so scared for him! He's to little for all of this stress! He had surgery when he was 6 days old. I was so afraid that he would not be okay. He was in the hospital for 11 more days. He had trouble getting off the ventilator-when they took it out, they wanted to put it back in right away. They let me hold him first. He started getting better immediately and they did not put the ventilator back in. While I had been by his side constantly, I could not hold him until then. Now he was getting better. We finally got to go home!!
Two days later, we got the call from his pediatrician - Joey has Down Syndrome. She did not tell us sooner because she felt we had enough to deal with. That did not seem like such a scary thing anymore! We had a few more tests, saw seven doctors, and we are very happy to say that we should not have any more problems - thank goodness!!
We found out that he has about 50% of his blood cells with an affected chromosome. What can we expect from this? We know that we will have love and happiness. We know that we will have hard times and heartaches. We know that because we are parents. We always hope for the best-especially for our children.
RSS Feed
