The test came back positive after three months of trying. Michael was hunting so I decided to text him with the news. I knew he would not answer the phone if there were any deer near his blind. He was so excited. Family happened to be in since it was close to Thanksgiving. We decided to go ahead and tell everyone. So we sat in the dining room while everyone was playing apples to apples and dropped the news. Everyone was excited for us. The first couple of months of Dr. visits went well. Everything seemed to be progressing as normal. At 20 weeks we saw a specialist to determine the sex and finally had our answer...it's a boy. We went back at 24 weeks to ensure everything was still progressing as it should be. We got the scare of a lifetime. The Dr. said the ventricles in Conner's brain were enlarged, and that his stomach was measuring smaller than normal. All of a sudden joy turned to panic when he advised we do an amniocentesis. I thought, I'm only 26, why do I need one of those? Anyways the test was done immediately and we began the long greuling wait for the results. After about 2 weeks all results were in and nothing came back as odd. The Dr. decided to send me for a fetal MRI. That was interesting. Everyone who has ever been pregnant knows that lying on your back for too long makes your legs and arms go numb. To top it all off Conner did not enjoy the noise and moved constantly so it took about an hour and a half to complete. When the results came in, the Dr. said that Conner was missing a very large part of his corpus callosum (the area of matter that connects the 2 halves of the brain). We continued to go and see this specialist about every 2-4 weeks to keep an eye on things.
Three weeks before my due date, during church, I started to have some really sharp pains. We decided to go home and time the contractions. I was not sure if they were acutal labor pains or not. Margarett said they were and it was time to go to the hospital. Of course I insisted on eating first. I had heard too many horror stories of women have 24 hours of labor and no food. After a Subway sandwich I was checked into the hospital at 2:30pm. I was checked by the Dr., my water was broken, and at 7:30pm Conner arrived. He was 18 inches long and weighed only 4lbs. 8oz. We knew something was wrong with him, but no Dr.s in Abilene were able to diagnose him properly. Two days later he was flown on a helicopter to Cook Children's Medical Center in Ft. Worth. That was very hard and scary for me.
We quickly packed our things at home and headed that way. Conner was taken care of very well there. They quickly had a neurologist and a genetecist see and test him. His genetic testing came back positive for Miller-Dieker Syndrome. This is a micro-deletion syndrome where the brain is smoother than it should be (lissencephaly), seizures are almost always evident, and developmental delay can be greatly impaired. Of course this was very hard for us to accept and understand. We were also given the news that we would have to be tested to ensure that subsequent children would not have a high risk for the same syndrome. Luckily we found out that it was a fluke and just happened by a very rare chance. Conner was also having trouble eating. He would choke and silently aspirate when he drank from a bottle. We finally opted to have a g-tube put in. That has been well worth it. He is now almost 12lbs. We stayed at Cook's for almost a month, and were very happy when we finally got to go home.
Since then, Conner has been doing very well. As I mentioned before, he has gone from 4lbs. 8oz. to almost 12lbs. We have not seen any seizure activity as of yet. Keep your fingers crossed and pray that we are one of the few that will avoid that part of the syndrome. With the help of our physical therapist, Conner has been doing very well on head control and rolling over. He has also been grasping things and sucking on them. We also have a swallow study scheduled for tomorrow to see how well he will do with thicker foods like rice cereal. I gave him some last night, and he did not choke at all. He quite enjoyed being able to taste something.
Having a handicapped child definately threw us for a loop regarding our plans, but he has been the biggest blessing that anyone could possibly receive. We love him very much.
Three weeks before my due date, during church, I started to have some really sharp pains. We decided to go home and time the contractions. I was not sure if they were acutal labor pains or not. Margarett said they were and it was time to go to the hospital. Of course I insisted on eating first. I had heard too many horror stories of women have 24 hours of labor and no food. After a Subway sandwich I was checked into the hospital at 2:30pm. I was checked by the Dr., my water was broken, and at 7:30pm Conner arrived. He was 18 inches long and weighed only 4lbs. 8oz. We knew something was wrong with him, but no Dr.s in Abilene were able to diagnose him properly. Two days later he was flown on a helicopter to Cook Children's Medical Center in Ft. Worth. That was very hard and scary for me.
We quickly packed our things at home and headed that way. Conner was taken care of very well there. They quickly had a neurologist and a genetecist see and test him. His genetic testing came back positive for Miller-Dieker Syndrome. This is a micro-deletion syndrome where the brain is smoother than it should be (lissencephaly), seizures are almost always evident, and developmental delay can be greatly impaired. Of course this was very hard for us to accept and understand. We were also given the news that we would have to be tested to ensure that subsequent children would not have a high risk for the same syndrome. Luckily we found out that it was a fluke and just happened by a very rare chance. Conner was also having trouble eating. He would choke and silently aspirate when he drank from a bottle. We finally opted to have a g-tube put in. That has been well worth it. He is now almost 12lbs. We stayed at Cook's for almost a month, and were very happy when we finally got to go home.
Since then, Conner has been doing very well. As I mentioned before, he has gone from 4lbs. 8oz. to almost 12lbs. We have not seen any seizure activity as of yet. Keep your fingers crossed and pray that we are one of the few that will avoid that part of the syndrome. With the help of our physical therapist, Conner has been doing very well on head control and rolling over. He has also been grasping things and sucking on them. We also have a swallow study scheduled for tomorrow to see how well he will do with thicker foods like rice cereal. I gave him some last night, and he did not choke at all. He quite enjoyed being able to taste something.
Having a handicapped child definately threw us for a loop regarding our plans, but he has been the biggest blessing that anyone could possibly receive. We love him very much.
