Wednesday, February 9, 2011

CHD Awareness Week - Day 3


7 BITS OF ADVICE FOR CHD PARENTS
1.  Ask for help.  This was a hard one for me and Craig.  It is hard to ask people to help you, but necessary.
2.  Accept help that is offered.  This was even harder for both of us.  People want to help and it is okay to take them up on the offer.
3.  Join a support group.  You have to do this when you are ready.  Some are ready before others. 
4.  Ask questions!  Ask lots and lots of questions.  Make sure that you understand what is happening with your child.
5.  Speak up!  You know your child best.  Sometimes you have to follow your gut and speak up. 
6.  Appreciate your doctors, nurses, etc.  They are taking good care of your kids.
7.  Appreciate each and every day with your little one.  Some parents are not as lucky and don't get to have their kids with them.  Even when Gracie is driving me nuts, I really try to remember this. 
More CHD fun tomorrow!!

Tuesday, February 8, 2011

CHD Awareness Week - Day 2


7 WAYS YOU CAN HELP!
1.  Donate blood!!  This is so important.  All of our kiddos receive blood during their surgeries.  If you want your donation to be directly credited to Gracie, contact me and I will give you our account info.  If not, come out to Medical City on February 12.  Our support group is having a blood drive from 10-4.
2.  Donate money to your favorite cause.  Amazing Little Hearts is finally a non-profit.  Contact me for info on how to donate.
3.  Support a group.  If you don't want to donate money, donate some of your time to a group.  Offer to help them.
4.  Become an organ donor!!  I am on....and everyone in my family knows it.
5.  Find a cause that is important to you.  For me, it is CHD Awareness.  Find your passion.
6.  Educate people about CHD. 
7.  Support a family.  Just be a shoulder to lean on with they need someone to be there for them.

Monday, February 7, 2011

CHD Awareness Week - 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!!

Tuesday, February 1, 2011

Snow Day!!

This crazy Texas weather!!  We were wearing short sleeves this weekend.  It was beautiful outside.  Today the temp has been in the low 20's.  There is snow and ice on the ground.  Since we don't really know how to handle it, everything is pretty much shut down!  The kids have been begging to go outside all morning.






And some videos for your entertainment.....







Bike Riders

So, the boy has been super scared to try riding a bike with no training wheels.  We are mean parents who were determined that our kid was going to know how to ride a bike.  Mommy, the more patient parent, worked with him this past weekend.

We present to you.....the bike rider!!


And, not to be outdone by the attention that her brother was getting.....  She insisted that I video her too.  She is funny because she doesn't weigh enough to really get the bike moving.  She gets stuck quite a bit which causes me to have to do a lot of pushing.