Thank you to everyone who is reading our blog and for the lovely comments. We are amazed at the outpouring of love, support, and prayers we have received for Clare. Clare has prayers coming from around the country from close family and friends to complete strangers! That is such a comfort to us during these rough days with so much out of our control. We know Clare is in God's hands.
God bless you all! Keep the prayers coming!
Tuesday, June 28, 2005
Saturday, June 25, 2005
Sedated Echo
Clare had her second sedated echocardiogram today, and the news was not good. Shawn and I both had a feeling of dread driving to the clinic today. Our fears were confirmed. Clare's supravalvar aortic stenosis has greatly worsened. To the point where our cardiologist does not feel it is safe to do any more sedated echos. Therefore, Clare is having her first catheterization in the next two weeks. The procedure will be primarily exploratory to obtain exact measurements and degrees of stenosis (for her future open heart surgery). While they are in there, they may try to balloon dilate her pulmonary branches as well.
I know we're still in a state of shock to some degree. We knew Clare would undergo this procedure, we just didn't think it would happen so soon. We have been warned that this is a risky procedure because of the Williams Syndrome and that she is so young (she is almost 3 months old). She is so little (weighs barely over 11 lbs), and seems so delicate to me. She still looks so healthy, though, and I thank God for that. Even though her little heart is not healthy, it gives me comfort that she looks healthy. Maybe that's stupid and I am lying to myself, but it makes me feel better, so I don't care! Right now, I know I am coping by being in organzation mode. Having something to do keeps me from going insane worrying about the outcome of the procedure. I have read everything on the Boston Children's Hospital website, researched hotels in the area, and we are making our arrangements for Jamie's care while we are gone.
There are many prayers out there right now for our Clare.
I know we're still in a state of shock to some degree. We knew Clare would undergo this procedure, we just didn't think it would happen so soon. We have been warned that this is a risky procedure because of the Williams Syndrome and that she is so young (she is almost 3 months old). She is so little (weighs barely over 11 lbs), and seems so delicate to me. She still looks so healthy, though, and I thank God for that. Even though her little heart is not healthy, it gives me comfort that she looks healthy. Maybe that's stupid and I am lying to myself, but it makes me feel better, so I don't care! Right now, I know I am coping by being in organzation mode. Having something to do keeps me from going insane worrying about the outcome of the procedure. I have read everything on the Boston Children's Hospital website, researched hotels in the area, and we are making our arrangements for Jamie's care while we are gone.
There are many prayers out there right now for our Clare.
Thursday, June 23, 2005
Daddy's first post
There is nothing extremely new going on with Clare right now, except she woke up every hour last night; so at 5:30am I got up to give Mom some rest. Anyway, I thought I would do my first post. I don't know who will be reading this and what I have to offer, but I thought I would share some of my initial thoughts regarding Clare and the Williams diagnosis. When we found out we were having a girl, I was so excited. I just thought of all the possibilities: sending her off to the prom, walking her down the aisle on her wedding day, and Father Daughter Dances (do they still do those?). I think that is one of the hardest things is realizing that my little girl may not have a normal life, she will not be able to do all the things that Jamie is going to get. That's tough! You want the best for your kids, and generally you can give them that. But once you have a special needs child all those things seem to disappear. I am nervous about what our life will be like from now on. Will we be strong enough to handle this situation. How will this affect Jamie's personality, what strain will this put on our marriage. So what do we do? Well , we pray, and we take one day at a time. And as Teresa expressed earlier we relish the little accomplishments. I have still not gotten my first daddy smile, but I know it is coming. She is just practicing the little ones on everyone else and she is working on a big one for daddy! I have often asked myself, Why us? I truly think the answer is that God needs special people in this world and he needs someone to take care of them! So that was my first post, hope it wasn't boring. This is really Teresa's thing (she does a much better job of it than I do) but I would like to help her out with it every now and then. Thanks!
Tuesday, June 21, 2005
Positive FISH Test
We learned today that Clare's FISH test came back positive. This means she definitely has Williams Syndrome. We already knew she did even without this confirmation, but I still have moments when I look at her and think that maybe it was a mistake. She looks so normal and healthy. Then we would get a call from one of her doctor's about something, and I would be brought back to reality that Clare is going to be (or is) a special needs child.
Shawn told someone at work the other day that he had a daughter with a disability. It was the first time he said it, and he said that was very hard for him. It's hard for us all. At church this past Sunday, we were chatting with a lady we were acquainted with, but didn't know very well. She was cooing over Clare, and said, "I can't see either of you in her. Who does she look like? She doesn't look like either of you!" We did not tell her why Clare did not look like us or Jamie. We are not ashamed of it, but I did not feel it was the time to go into a long monologue about Williams Syndrome with a relative stranger. I have a feeling there are going to be many instances in the future when someone says something about Clare, and we just smile and make no comment. Or should we make a comment? I don't know. Maybe it's still just so new to us.
Shawn told someone at work the other day that he had a daughter with a disability. It was the first time he said it, and he said that was very hard for him. It's hard for us all. At church this past Sunday, we were chatting with a lady we were acquainted with, but didn't know very well. She was cooing over Clare, and said, "I can't see either of you in her. Who does she look like? She doesn't look like either of you!" We did not tell her why Clare did not look like us or Jamie. We are not ashamed of it, but I did not feel it was the time to go into a long monologue about Williams Syndrome with a relative stranger. I have a feeling there are going to be many instances in the future when someone says something about Clare, and we just smile and make no comment. Or should we make a comment? I don't know. Maybe it's still just so new to us.
First Smile
After weeks of waiting, we finally saw Clare's smile! I think she was a little behind developmentally in giving us the smile, but once it came, it was well worth the wait! She actually smiled for Jamie first last week. (Big brothers who can be very silly have that effect on people!) But I received 2 smiles yesterday.
As soon as Clare smiles for the camera, we'll post a photo of her precious smile. It lights up her face. I've read that children with Williams are the sweetest, most loving children. We cannot wait to see that in Clare.
A smile may seem a tiny thing, but to us, it's a HUGE deal! Every little milestone Clare hits is a triumph!
As soon as Clare smiles for the camera, we'll post a photo of her precious smile. It lights up her face. I've read that children with Williams are the sweetest, most loving children. We cannot wait to see that in Clare.
A smile may seem a tiny thing, but to us, it's a HUGE deal! Every little milestone Clare hits is a triumph!
Sunday, June 19, 2005
Clare's Birth and Diagnosis
Clare Therese was born on March 31, 2005 at 8:52 pm. She was nine days post-due, so I was induced via Pitocin. Labor was hard and delivery was fast - 3 pushes and she was out! Clare weighed 6 lbs, 8 oz and measured 20 1/4". We were ecstatic to welcome Clare Therese to our family, which included big brother, Jamie, age 26 months.
Clare was a great baby from the start. She took to nursing immediately and was a good sleeper. After a very long pregnancy, we were so glad she was here! When she was a day old, though, our pediatrician heard a heart murmur. We were still in the hospital, so the pediatrician called in the pediatric cardiologist to take a look at Clare. Our cardiologist spent a long time examining Clare and listening to her heart. We knew something was wrong. The cardiologist explained that she thought Clare had a hole in her heart - a very common birth defect. She wanted to do an echocardiogram to check it out. Shawn and I were both extremely upset over this news - of course, we were! No one wants to hear their newborn baby may have a problem. We were blessed that my mom was with us at that time, so she was a great source of support for us. The echo was done that night in the hospital. However, the cardiologist found something more than a hole in the heart. Clare's pulmonary arteries were narrowed (pulmonary stenosis). After going over the long list of concerns for that, the cardiologist wanted to see us in two weeks to do another echo. And we were discharged from the hospital - sent home with lots of questions, anxiety, and uncertainty over Clare's future.
Those first two weeks were rough! We were constantly checking Clare to be sure she was okay. Since this was our second time at parenthood, we assumed that we would be less nervous, more mellow about everything. Wrong! When you're told your baby has a heart defect, every little cry makes you nervous. At the echo when Clare was two weeks old, the cardiologist found more narrowing in Clare's vessels. She wanted to do another echo in two weeks to keep an eye on this. At this time, we still thought we were just dealing with heart defects. When we saw our pediatrician for Clare's well-baby visit, he said they wanted us to see a geneticist to determine if Clare had some "condition." We agreed because anything that helped Clare was for the best.
Clare had her third echo at 4 weeks old, and that was when the cardiologist mentioned Williams Syndrome. Clare's echo showed that she had supravalvar aortic stenosis as well and narrowed aortic branches. The cardiologist explained that one symptom of Williams is the deletion of the elastin gene, which is used in constructing vessels and valves. Given that all of Clare's vessels and valves in her heart were too small, she thought Williams might be the key. We had never heard of Williams Syndrome. We probed the cardiologist for more answers and were told the myriad of other conditions that can be part of Williams Syndrome. Needless to say, we were stunned. We never considered the thought that there could be more wrong with her than her heart. We anxiously awaited our appointment with the geneticist. We saw him on May 16 and, at that time, Clare was clinically diagnosed with Williams Syndrome. Since that meeting, Clare has undergone a battery of tests and exams for various conditions caused by WS. In addition to the heart defects, she has congenital hypothyroidism and hypercalcemia. Her renal arteries are also being examined for possible renal stenosis due to her slightly elevated blood pressure. We have quickly learned that there can be many health issues associated with WS. She has a sedated echocardiogram every month to monitor her heart. We also have visits with the endocrinologist and pediatrician.
So now she has been diagnosed with WS (although we are still awaiting the results of the FISH test - the blood test that will confirm if the genes are missing). On a positive note, Clare herself is doing great. At 2 1/2 months old, she is a wonderful nurser, pretty good night sleeper, and our precious baby girl. Jamie loves having a baby sister and, although there are times he wants me to put her down, for the most part, he loves to hug and kiss Clare and is a very big helper - always ready to burp her or throw her dirty diaper away! We are blessed to have two such incredible children.
Clare was a great baby from the start. She took to nursing immediately and was a good sleeper. After a very long pregnancy, we were so glad she was here! When she was a day old, though, our pediatrician heard a heart murmur. We were still in the hospital, so the pediatrician called in the pediatric cardiologist to take a look at Clare. Our cardiologist spent a long time examining Clare and listening to her heart. We knew something was wrong. The cardiologist explained that she thought Clare had a hole in her heart - a very common birth defect. She wanted to do an echocardiogram to check it out. Shawn and I were both extremely upset over this news - of course, we were! No one wants to hear their newborn baby may have a problem. We were blessed that my mom was with us at that time, so she was a great source of support for us. The echo was done that night in the hospital. However, the cardiologist found something more than a hole in the heart. Clare's pulmonary arteries were narrowed (pulmonary stenosis). After going over the long list of concerns for that, the cardiologist wanted to see us in two weeks to do another echo. And we were discharged from the hospital - sent home with lots of questions, anxiety, and uncertainty over Clare's future.
Those first two weeks were rough! We were constantly checking Clare to be sure she was okay. Since this was our second time at parenthood, we assumed that we would be less nervous, more mellow about everything. Wrong! When you're told your baby has a heart defect, every little cry makes you nervous. At the echo when Clare was two weeks old, the cardiologist found more narrowing in Clare's vessels. She wanted to do another echo in two weeks to keep an eye on this. At this time, we still thought we were just dealing with heart defects. When we saw our pediatrician for Clare's well-baby visit, he said they wanted us to see a geneticist to determine if Clare had some "condition." We agreed because anything that helped Clare was for the best.
Clare had her third echo at 4 weeks old, and that was when the cardiologist mentioned Williams Syndrome. Clare's echo showed that she had supravalvar aortic stenosis as well and narrowed aortic branches. The cardiologist explained that one symptom of Williams is the deletion of the elastin gene, which is used in constructing vessels and valves. Given that all of Clare's vessels and valves in her heart were too small, she thought Williams might be the key. We had never heard of Williams Syndrome. We probed the cardiologist for more answers and were told the myriad of other conditions that can be part of Williams Syndrome. Needless to say, we were stunned. We never considered the thought that there could be more wrong with her than her heart. We anxiously awaited our appointment with the geneticist. We saw him on May 16 and, at that time, Clare was clinically diagnosed with Williams Syndrome. Since that meeting, Clare has undergone a battery of tests and exams for various conditions caused by WS. In addition to the heart defects, she has congenital hypothyroidism and hypercalcemia. Her renal arteries are also being examined for possible renal stenosis due to her slightly elevated blood pressure. We have quickly learned that there can be many health issues associated with WS. She has a sedated echocardiogram every month to monitor her heart. We also have visits with the endocrinologist and pediatrician.
So now she has been diagnosed with WS (although we are still awaiting the results of the FISH test - the blood test that will confirm if the genes are missing). On a positive note, Clare herself is doing great. At 2 1/2 months old, she is a wonderful nurser, pretty good night sleeper, and our precious baby girl. Jamie loves having a baby sister and, although there are times he wants me to put her down, for the most part, he loves to hug and kiss Clare and is a very big helper - always ready to burp her or throw her dirty diaper away! We are blessed to have two such incredible children.
Tuesday, June 14, 2005
Clare's Journey
Our daughter, Clare, was diagnosed with Williams Syndrome when she was 6 weeks old. This is a rare genetic condition that causes heart defects, developmental delays, and many other conditions. We were shocked and upset by the diagnosis and are overwhelmed with many emotions. I set up this journal to share Clare's story and our story - as therapy for me (the mom!) when the times get rough, to share Clare's accomplishments and triumphs with those we love, and, maybe in the future, to give hope to another set of parents whose child has been diagnosed with Williams Syndrome.
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