Now we know that little Chandler has a thanatophoric dysplasia. We still have a little hope that it is incorrect but also trying to be realistic and be prepared for the delivery. I am 28 weeks right now and I hope that I have another 12 weeks to go because it means that Chandler has 12 more weeks of life. I having horrible constant pain under my rib on the right side. It started few weeks ago and it was kindo come and go and now it is there all the time. The only time I do not feel the pain is when I am laying on my right side. So it is hard to be at work all day but I am trying as hard as I can. for my Chandler.
Tom and I built new house 3 years ago.
We sold our old house much faster than we planned, so for 8 months we were living with his father. Between moving from house to house I lost some jewelry my parents gave me as my Wedding gift 6 years ago. I was mad and upset on myself for it and lost any hope to see it again.
On July 3rd, I went to my favorite BJ's store to buy some grocery and to pay for next year membership. Lady at the service desk was very nice, while she was trying to find out how I can use my company's membership discount, she asked about me prior address of living. I confirmed that it's correct. To my surprise, she told me that she bought my house. I looked at her and realized that yes, I remember her. We started talking about the house, about old neighbors, local news. Then she told me that just few days ago she found this little jewelry box with earrings and the ring but she did not have my phone number. I could not believe it! "Green and white stones?", I asked. She confirmed!!
What an honest person! I came to her house next day and she gave me my jewelry plus it had a golden nickles I did not realize I was missing! I gave her a little gift certificate but she did not want to take , luckily she finally did. I told her how much this jewelry means to me, because it came from my parent from Russia. This Lady, her name is Branda, made me so happy that day! It also was a sign for me that everything is under God's control, and only God knows what is the best for Little Chandler, so I have to trust him!
Sunday, July 12, 2009
Wednesday, July 8, 2009
DNA Test Results
It took about 5-6 weeks for DNA test results to come back. During this time I had to have an ultrasound every 2 weeks. I had to switch from midwife to high risk pregnancy doctor. Our doctor was still very positive about the ultrasound, predicting achondroplasia, but genetic doctor still had a big concern. After about week 24 ultrasound, Chandler's limbs growth slowed down. During 2 weeks time period they grew up only by few days, so now we had a gap between body and limbs growth of 6-7 weeks, head was growing much faster, and was 4 weeks ahead. But doctor was still positive. I knew that something did not feel right, but Tom and I hoped that it is an achondroplasia, we are going to have a healthy little person. Baby's limbs are curved, but we knew that surgery can be done to fix it, so we were looking at his future very positively. My sister-in-law even decided to by a miniature horse so little Chandler could have a little horse.
I have looked at a lot of little people web sites, blogs, camp picture and I was already picturing us and little Chandler among these wonderful people. I have learned so much and I have opened my eyes on so many things I could never even think or guess about. How wonderful and special these people are. I will be honest, but I kindo was excited that our Chandler is going to be so special! Tom and I even took a wonderful trip to visit his family in Alabama. His sister went with us and three of us had a great time! Again I learned a lot from Tom's Aunt who owns a day care there about kids with special needs, that they can join regular day care and it made me even more excited.
But day when we had to find out our DNA test results finally came. Our genetic counselor and genetic doctor called me while I was at work. The first thing they said was if my husband is there. I knew exactly at this moment what results they are going to tell me.. It was a shock, end of the dreams, I could not stop crying. My boss was very nice and understanding, he even offered to take me home but I just wanted to be along, I called Tom, and he immediately left work to meet me at home.
I was trying to keep my emotions under control during my hour drive from work.. The only thing I wanted to do is to come home and close my eyes and be able to forget about it.. But how you can
I have looked at a lot of little people web sites, blogs, camp picture and I was already picturing us and little Chandler among these wonderful people. I have learned so much and I have opened my eyes on so many things I could never even think or guess about. How wonderful and special these people are. I will be honest, but I kindo was excited that our Chandler is going to be so special! Tom and I even took a wonderful trip to visit his family in Alabama. His sister went with us and three of us had a great time! Again I learned a lot from Tom's Aunt who owns a day care there about kids with special needs, that they can join regular day care and it made me even more excited.
But day when we had to find out our DNA test results finally came. Our genetic counselor and genetic doctor called me while I was at work. The first thing they said was if my husband is there. I knew exactly at this moment what results they are going to tell me.. It was a shock, end of the dreams, I could not stop crying. My boss was very nice and understanding, he even offered to take me home but I just wanted to be along, I called Tom, and he immediately left work to meet me at home.
I was trying to keep my emotions under control during my hour drive from work.. The only thing I wanted to do is to come home and close my eyes and be able to forget about it.. But how you can
Monday, July 6, 2009
19 weeks ultrasound..
My pregnancy went great, no morning sickness, no crazy cravings, every dr. appointment went as it was in the book, great 8 weeks ultrasound.
I did not even think about my 19 weeks ultrasound, I was just exited to see our baby again, how he/she is growing. My hubby and I decided do not find out if it is a boy or girl, because we did not really care, as it is our first child.
My husband was running a little bit late, so I was waiting for him so we could look at our baby together. We were laughing looking at our baby, my husband was saying that baby got his nose and baby was waving to him. Ultrasound technician was very nice, she finished everything and told us that she needs to see something else after she comes back. We were laughing that she just disappeared for 15 min or so. She came back with the doctor, he started talking with us about baby's development, that this is good, this is good too, but.. there is a possibility that baby is a dwarf because of the shortness of baby's limbs. So we have to have 2 level ultrasound done in Akron Children's hospital.
We left speechless, it was like a bad dream.. dwarf.. how this could happen?? we are normal size people, have no dwarfs in the family history. First thing we did, when we came home we started searching Internet.. What a discovery! I would never guess that it is possible. I cannot forget how one women said that when you are pregnant, you expect your baby to be born healthy.. and here we are .. It took for them 2 weeks before they could schedule our 2nd level ultrasound, they were the longest 2 weeks. That day we had to meet ultrasound doctor, genetic counselor, genetic doctor, case manager and ultrasound technician. It was clear that something was definitely wrong. Both doctors explained us what they see, and what they concerns are. At this point, baby's limbs measured at 15 weeks, had was normal size but abnormal shape, chest was in 5-10 percentile, small but still ok. So it was definitely a dwarf-baby. We were talk what at this point it is hard to say if this is an achondroplasia or Thanatophoric Displasia. One doctor was 99% sure that it is an achondroplasia, another one that it is a Thanatophoric Displasia. So we were offered to have a amniocentesis done, which we did.. Another month os waiting the testing results.
First good news we got is that all chromosomes are normal, we passed heart echo test with A+, not no DNA test results yet.. until a week ago
I did not even think about my 19 weeks ultrasound, I was just exited to see our baby again, how he/she is growing. My hubby and I decided do not find out if it is a boy or girl, because we did not really care, as it is our first child.
My husband was running a little bit late, so I was waiting for him so we could look at our baby together. We were laughing looking at our baby, my husband was saying that baby got his nose and baby was waving to him. Ultrasound technician was very nice, she finished everything and told us that she needs to see something else after she comes back. We were laughing that she just disappeared for 15 min or so. She came back with the doctor, he started talking with us about baby's development, that this is good, this is good too, but.. there is a possibility that baby is a dwarf because of the shortness of baby's limbs. So we have to have 2 level ultrasound done in Akron Children's hospital.
We left speechless, it was like a bad dream.. dwarf.. how this could happen?? we are normal size people, have no dwarfs in the family history. First thing we did, when we came home we started searching Internet.. What a discovery! I would never guess that it is possible. I cannot forget how one women said that when you are pregnant, you expect your baby to be born healthy.. and here we are .. It took for them 2 weeks before they could schedule our 2nd level ultrasound, they were the longest 2 weeks. That day we had to meet ultrasound doctor, genetic counselor, genetic doctor, case manager and ultrasound technician. It was clear that something was definitely wrong. Both doctors explained us what they see, and what they concerns are. At this point, baby's limbs measured at 15 weeks, had was normal size but abnormal shape, chest was in 5-10 percentile, small but still ok. So it was definitely a dwarf-baby. We were talk what at this point it is hard to say if this is an achondroplasia or Thanatophoric Displasia. One doctor was 99% sure that it is an achondroplasia, another one that it is a Thanatophoric Displasia. So we were offered to have a amniocentesis done, which we did.. Another month os waiting the testing results.
First good news we got is that all chromosomes are normal, we passed heart echo test with A+, not no DNA test results yet.. until a week ago
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