I Failed

I failed at posting every day obviously. I tried, but things came up within our family and when things come up I tend to blog less instead of more. Bad me.

I did want to leave you with one last blog. Scarlet's story. Scarlet's picture is up at the top on the right side of the blog. Does she look like a child with a congenital heart problem?

Heart problems are not always obvious. So here are the facts.

*This year 40,000 babies will be born with a congenital heart defect.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

We did not know until Eli was two weeks old that he had congenital heart defects. I wish that I would have known before hand. I have since learned that there are VERY important questions you can ask during your "20 week" ultrasound. Sadly these things are not always checked. I know they were not checked with Eli.

1. Do you see 4 chambers?

2. Do you look at the arteries or outflow tracks as part of your scan? *Note: Extremely important to focus on artery views. CHD often missed if only a standard “chamber view” is performed.

3. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

4. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

5. Are the heart and stomach in correct positions? Both organs should lay on the left side of the fetus.

I cannot stress the importance of these questions. If you are pregnant or know someone that is. Please take these questions with you and ask.

So as I mentioned in yesterday's post they are making great strides in the field of CHD's. However, we still have stories such as Cora's. Cora's story comes so close to home for me. If you know Eli's story from birth you know that he nearly died in my arms four seperate times within the first two weeks of life. These stories should NOT exist. But the sad fact is they do. No child should die like this when the answer is so clear. Better CHD screening prenatally and in EVERY newborn. PERIOD!

Welcome To Adulthood

As a parent of a child with CHD's, the biggest worry we face is "will my child make it adulthood". Fortunately there are people like Lauren who are a testiment that it can be done and, the fact is, they ARE making it to adulthood. I'm so thankful for the advancements they have and are making with CHD's.

Half A Heart

It's hard to imagine a baby being born with only half a heart. A baby who doesn't have all four chambers. However, these kids exist. These kids and their families have a special place in my heart. Although Eli has all four chambers, his left side is smaller than it should be. However, we are lucky because it does work. Some kids like Owen were not so fortunate. Someday Owen will need a new heart. Soon they will be heading off to surgery to "patch" parts of his heart to buy more time. This is one of the many faces of CHD.

Congential Heart Defects (CHD) Awareness Week

Although I am not good about posting on my blog every single day, or every week for that matter, this week I hope to be different. As a blogger and the mother of a child with congenital heart defects, I of course want to do my part to spread awareness this week. But what? I'm not creative. Lots of other blogs will give you the facts? So what can I do? Well, I think you need to see the faces of these children. When someone says congenital heart defects I think most picture a child who is on oxgyen 24/7 or somehow you think you can "just tell" by looking at them. That is so far from the truth. Yes when things get bad as it often does for lots of kiddos with heart issues you might see them not keeping up, or turning blue, but for the most part you won't be able to tell. I will warn you now there are pictures below that WILL disturb some. But they are a reality for us. The scars are a reminder to hold my son close and be thankful for every moment I have with him here on earth.

Can you tell he has congenital heart defects?


This is after his fourth surgery at 2 1/2 years old.




And this is after his fifth surgery at 3 1/2 years old.


The first blog I want to show you is When Life Hands You A Broken Heart
This week she is interviewing the parents of these children. If you think you will just "be able to tell", reading this may change your mind.

Happy Birthday Brice AND Eli?

Screech (insert scratchy record noise here)

Some who read this may know Eli's birthday is NOT today. At least the day he turns another year older doesn't happen on this date. His real birthday is in July. Then why the title of this post? If you're a heart mom you know the answer. Two years ago today Eli was in the hospital recovering after open heart surgery. Two years ago our world was turned upside down. They took Eli in to surgery and he very nearly did not make it out alive. I still cry. God's love and mercy amaze me. I am forever grateful God chose to leave Eli with us. It's hard to put into words.

So today we remember how very fortunate we are. Today we are thankful for not being at the hospital waiting to hear if Eli made it through the operation okay.

So Happy Birthday to both my husband and Eli.

Wordless Wednesday