Thursday, March 29, 2012
Best of Intentions
I always have the best of intentions of posting here....sadly there are not enough hours in my day. Hopefully there will be a catch up post very soon. I have lots of thoughts swirling around in my head that would do better on paper. Soon......
Tuesday, February 7, 2012
CHD Awareness - Day 1
Today is the first day of Congenital Heart Defect Awareness Week! Look for lots of posts about CHD's this week and help us spread the word to raise awareness!!
7 FAQ’s
•
1.What is a congenital heart defect? CHD’s are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware she is pregnant. Defects range in severity from simple to problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
2.Who is at risk to have a child with a congenital heart defect? Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of CHD, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
3.How many people in the United States have a congenital heart defect? Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
4.Why do congenital heart defects occur? Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
5.How can I tell if my baby or child has a congenital heart defect? Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
6.How serious is the problem? CHD’s are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. (author's note....Can you believe this statistic?? Another fact is that 5 times the amount of money spent on CHD research is spent on childhood cancer research!!) Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.
7.Are things improving? Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.
One of the things that I feel VERY strongly about is raising awareness about CHD's. They are everywhere. It is amazing how many people I have met and when they find out about Gracie....they know someone who had a CHD or had a CHD themselves. Why do you not hear about CHD's the way that you hear about other childhood diseases??
Do your part to help raise awareness!!
7 FAQ’s
•
1.What is a congenital heart defect? CHD’s are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware she is pregnant. Defects range in severity from simple to problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
2.Who is at risk to have a child with a congenital heart defect? Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of CHD, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
3.How many people in the United States have a congenital heart defect? Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
4.Why do congenital heart defects occur? Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
5.How can I tell if my baby or child has a congenital heart defect? Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
6.How serious is the problem? CHD’s are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. (author's note....Can you believe this statistic?? Another fact is that 5 times the amount of money spent on CHD research is spent on childhood cancer research!!) Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.
7.Are things improving? Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.
One of the things that I feel VERY strongly about is raising awareness about CHD's. They are everywhere. It is amazing how many people I have met and when they find out about Gracie....they know someone who had a CHD or had a CHD themselves. Why do you not hear about CHD's the way that you hear about other childhood diseases??
Do your part to help raise awareness!!
Friday, January 27, 2012
Catching Up!!
Some of you are my FB friends and have seen things that have been posted. I figured it was time to actually get an update together on all things Cooper!
Bennett got his cast off 3 weeks ago. Yea! However, he is still on complete restriction. Ugh! He feels perfectly fine so this is proving to be quite the challenge with him. He came running in the living room this week and did a handstand and a cartwheel before I could stop him. I am guessing that means that his arm doesn’t bother him a bit anymore. He is becoming quite the 7-year old. He is starting to get a little attitude! He has had to move his color at school a couple of times so last night resulted in him having to write 25 sentences…and it didn’t really phase him. I am hoping once he gets clearance to go to recess and play soccer again that he will have an outlet for his energy. He literally can’t sit still and I think a lot of it is due to the fact that he just can’t release it right now. Craig took him back to the dermatologist last week. His wart isn’t getting any better and we discovered that he has sweaty palms. This is causing the wart to be slow in the removal process. We got a prescription for a compounded cream and it is already making a difference! And, they told us that we might have to eventually treat the sweaty palms…..
Maggie is still such a sweetheart. Her 4-month (AHHHH! How can she possibly be that old already??) was Wednesday. She weighed 13.4 pounds (45%tile). I can’t remember what her height was but she was in the 75%tile. She is my tallest kiddo!! She has consistently been tall. She had her first bite of cereal last night and didn’t know what to think. Most of it came back out of her mouth! She is laid back and such a smiley girl. She is so close to rolling over….that darn arm just gets in her way!
And then we have Grace….as some of you know, we have been battling sickness since the beginning of December. She has had fever off and on, the elevated heart rate, and low sat levels. No one could really pinpoint what was going on with her. Lungs sound clear, x-rays look fine, etc. Last week was a rough week with her being sick. She started running fever on Saturday night. We went to the doctor last Monday and got diagnosed with “the crud”. She still had fever on Tuesday and it finally broke on Wednesday morning. She seemed to be feeling better. This week brought more of the same. She woke up on Monday looking very blue. We made an appointment with Dr. Prestidge on Monday. Her sats were in the high 60’s when we got there. He gave her steroids and breathing treatments. He wanted to see her back so we went back to Dallas on Wednesday. Her sats were in the low 80’s. Dr. P said he wanted to contact the pulmonologist and bounce things off of him. In talking with him and Dr. Thomas (cardio) we think there is something going on with the transfer of gases in her lungs. Last night, she threw up 3 times and then started running 102 fever again. It is so sad to see her like that. So, we went back to the pediatrician today. (That is the 3rd time this week!!) Dr. P was out, but we talked to him on the phone. Dr. F didn’t really have any explanations to the fever – because she had no fever once they got to the office! Her sats were 80 and Craig said she was bouncing off the walls. The plan is to get into the pulmonologist early next week to see what is going on with her lungs. We are glad that we are finally getting some leads on what to check because it has been very frustrating not knowing what is going on with her.
Whew. That should catch everyone back up! We would appreciate any prayers and positive thoughts that we can find out exactly what is going on with our girl.
Bennett got his cast off 3 weeks ago. Yea! However, he is still on complete restriction. Ugh! He feels perfectly fine so this is proving to be quite the challenge with him. He came running in the living room this week and did a handstand and a cartwheel before I could stop him. I am guessing that means that his arm doesn’t bother him a bit anymore. He is becoming quite the 7-year old. He is starting to get a little attitude! He has had to move his color at school a couple of times so last night resulted in him having to write 25 sentences…and it didn’t really phase him. I am hoping once he gets clearance to go to recess and play soccer again that he will have an outlet for his energy. He literally can’t sit still and I think a lot of it is due to the fact that he just can’t release it right now. Craig took him back to the dermatologist last week. His wart isn’t getting any better and we discovered that he has sweaty palms. This is causing the wart to be slow in the removal process. We got a prescription for a compounded cream and it is already making a difference! And, they told us that we might have to eventually treat the sweaty palms…..
Maggie is still such a sweetheart. Her 4-month (AHHHH! How can she possibly be that old already??) was Wednesday. She weighed 13.4 pounds (45%tile). I can’t remember what her height was but she was in the 75%tile. She is my tallest kiddo!! She has consistently been tall. She had her first bite of cereal last night and didn’t know what to think. Most of it came back out of her mouth! She is laid back and such a smiley girl. She is so close to rolling over….that darn arm just gets in her way!
And then we have Grace….as some of you know, we have been battling sickness since the beginning of December. She has had fever off and on, the elevated heart rate, and low sat levels. No one could really pinpoint what was going on with her. Lungs sound clear, x-rays look fine, etc. Last week was a rough week with her being sick. She started running fever on Saturday night. We went to the doctor last Monday and got diagnosed with “the crud”. She still had fever on Tuesday and it finally broke on Wednesday morning. She seemed to be feeling better. This week brought more of the same. She woke up on Monday looking very blue. We made an appointment with Dr. Prestidge on Monday. Her sats were in the high 60’s when we got there. He gave her steroids and breathing treatments. He wanted to see her back so we went back to Dallas on Wednesday. Her sats were in the low 80’s. Dr. P said he wanted to contact the pulmonologist and bounce things off of him. In talking with him and Dr. Thomas (cardio) we think there is something going on with the transfer of gases in her lungs. Last night, she threw up 3 times and then started running 102 fever again. It is so sad to see her like that. So, we went back to the pediatrician today. (That is the 3rd time this week!!) Dr. P was out, but we talked to him on the phone. Dr. F didn’t really have any explanations to the fever – because she had no fever once they got to the office! Her sats were 80 and Craig said she was bouncing off the walls. The plan is to get into the pulmonologist early next week to see what is going on with her lungs. We are glad that we are finally getting some leads on what to check because it has been very frustrating not knowing what is going on with her.
Whew. That should catch everyone back up! We would appreciate any prayers and positive thoughts that we can find out exactly what is going on with our girl.
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