So, I decided that a blog might be the easiest way to share information about our family with other family, and anyone who might stumble across my random musings. The main subject will of course be our children, and mostly Justin for right now, since he has the most to tell.
Some people have asked about Justin and his diagnosis of Trisomy 21 (Down Syndrome) and I wanted to share with anyone who wanted to know how we discovered his condition.
Justin is our second child, in fact, our second son. We didn't find out the sex of this child- I got my way this time- so we didn't have any prenatal tests, ultrasounds, or anything. I didn't even know the number of heartbeats because I didn't want any clues! We delivered at a birth center, as we did our first son, and the experience was as great as the first time. My sister was able to be there with us and my mom made it to town just in time. We went home shortly after the birth and everything seemed okay. Later that day, my husband said that Justin looked a bit different to him, and I had the same thought. We couldn't figure out who he looked like. We started talking and both agreed that he looked like he had Down Syndrome. We didn't know any of the physical characteristics to look for like we do now, but something was off to us.
The next day at the pediatrician's office after he finished the exam we mentioned our concerns. He said that he could see what we were saying, but he hadn't really noticed it before. He gave us a referral to the Genetics Clinic and we made an appointment. I called the midwife and very tearfully told her what had happened and what we were thinking. She said that she had seen what we saw, but she wasn't certain, and she wanted to wait to see what we would say. She encouraged us to have the testing for our peace of mind. When we saw her later in the week, she said that she didn't see anymore what she had seen at his birth, but we already had the appointment. We decided we would rather have the doctor laugh at us than not know.
We went on the 10th day of Justin's life to the Genetics Clinic. We had to take Travis with us because we couldn't explain to anyone why we need someone to babysit him beginning at 6am. The Geneticist was not convinced either way and we had to do the chromosome analysis to be certain. He said that he wouldn't be surprised if he did or didn't have Down Syndrome. The most difficult part of the day was having all the blood drawn that was needed for the tests. They drew the very most they could given his weight, and they thought he might have to come back for more. Then began the waiting. They said it could take up to 2 weeks for the chromosome analysis, but some of the other tests could come back earlier.
In the meantime, Randy's aunt passed away and we attended her funeral. It was a good opportunity for the family to meet Justin and enjoy Travis. It was difficult having other people dote on him because some of his features were things that were markers for Down Syndrome. I was scared to take Justin out because I was sure that everyone could see what I was seeing and they would ask something that I wouldn't know how to answer. (Where did he get those small ears? What are those spots in his eyes?) I purposefully avoided anything on the Internet that mentioned DS and I didn't look for anything that would make me wonder. I knew all I could do was wait. We got a call at the funeral, but waited until after it was over to return the call. It had only been 4 days since the test, so we thought it had to be one of the other tests, not the chromosomes, but it was, and the test was positive. He had an extra chromosome 21, Down Syndrome.
We were devastated at the least. I jumped out of the car and got Justin out of his car seat and clung to him crying. Randy was still on the phone and couldn't concentrate on what the counselor was saying. He had to call her back the next day. We had to think about what to do. I wasn't sure I could drive home, and then when I got home my mother was there with Travis and we had to tell her. We were supposed to meet my dad at the airport on his way through and I couldn't do that. I couldn't think very straight. It all happened so quickly.
We had to tell our family and friends and we did it gradually over the next few days and weeks. The response was so much more than I ever hoped. Everyone has been amazing. We have a long road ahead of us, but I know we have lots of people on our team to help us through it. All I can say is that it has been a God thing in every sense:
We believe that God opened our eyes to see what we didn't even know we were seeing and prompted us to get the help that we needed; and he closed other people's eyes to protect us in the meantime.
Many babies with DS have heart conditions that cause problems at birth, and that could have been even more serious at the birth center, and Justin didn't have any serious issues at birth.
We were so glad that we discovered the DS and didn't have someone tell us that something was wrong with our baby.
Randy was concerned about getting the call with the results of the test at work, and God planned for us to be alone with Justin so that we could hear it together.
God has been watching over us and we have confidence that he will continue to watch over us. He is good all the time, and we trust his plan for our family in every way.
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