CHD Picnic

Our whole family attended an "indoor picnic" on Sunday with other families who have been impacted by congenital heart defects. Here is a picture of me introducing Ethan to Sarah, an adult who was born with a CHD. She came to visit Ethan after his second surgery, and it was a special opportunity for me to be able to introduce them again. Sarah is showing Ethan that she has a scar on her chest, just like him. Sarah just had her pulmonary valve replaced about 6 months ago. She has had several open heart surgeries and they have all been done at Children's Mercy Hospital. They don't only perform open heart surgeries on children!

technology is advancing

When Ethan was diagnosed with a congenital heart defect, we were involuntarily thrown into a whole new world. It is a world that I wish we didn't have to live in, but for some reason, it was God's plan for our family. It is exciting to see things like this Growing a Heart clip and this Regeneration of Cells video. Our bodies are fearfully and wonderfully made by the Creator, and I am so glad that He gives humans wisdom and skill to learn new ways to save lives.

I am a member of a support group called CHD Families. It is for parents of children with heart defects. At our January meeting, we heard Dr. Hopkins of Children's Mercy Hospital speak about some groundbreaking research that is taking place right here at CMH in regards to heart valve replacements. It is pretty incredible!

Who does Levi look like?

We get this question all the time. Here are pictures of each of the kids at one year. Who do you think Levi looks like?

Levi

Ethan

Isaac

Abigail

Congenital Heart Futures Act

Just this past Tuesday, the Congenital Heart Futures Act was introduced in both the House and the Senate. In order for this piece of legislation to pass, it has to get majority support from both the House and Senate. This is groundbreaking news for all those living with a CHD and all those yet to be born with a CHD. If this passes, Ethan and so many others will be directly impacted!

Levi is ONE!

Happy Birthday, Levi! My baby is not a baby anymore...bittersweet. We celebrated with family and friends over the weekend and had lots of fun. Today, we celebrated some more by turning his carseat to forward facing, buying him his first cheeseburger and fries at McDonalds, opening gifts and having another piece of birthday cake. We feel very blessed.

such a big boy facing forward!

yum...cheeseburger!

more cake

red mustang for valentine's

This was our transportation for our Valentine's date last night! Brice surprised me by renting a red mustang! I have to say that it was more romantic than our minivan! The kids, especially Isaac and Ethan, thought it was so cool. They got to ride in it this morning and they were in heaven!

our sweet valentines's

best "echo" yet!

Ethan had his 6 month follow-up appointment with his cardiologist this morning. We are very grateful for the good news we received. The doctor walked in after reading Ethan's echocardiogram and said that this was Ethan's best echo yet (huge sigh!) When Ethan was born, he had 3 main areas of narrowing: his aortic artery, his aortic valve and his mitral valve. All 3 areas are growing and currently show only minor narrowing. He has good blood pressures, pulses and blood flow.

Ethan cooperated very well. He was actually a very serious little boy, sitting and lying completely still during his blood pressure check, EKG and echo. I tried to get him to relax and at least smile, but he didn't move much. It was funny to see him like that, but it definitely helped make everything go smoothly.

Dr. A did talk to me a little about Ethan's future as far as playing sports are concerned. Ethan's aortic valve is not normal and never will be. It may require surgery or another type of intervention in the future, but it may not. Only time will tell that. Either way, there is a good chance that this abnormal valve will limit Ethan as far as competitive sports are concerned, especially in the area of the intense conditioning required for these sports. Playing t-ball, basketball and soccer at the preschool/elementary level is fine, but he may not be able to pursue them into highschool because of the limitations of his heart.

As parents, we don't like to hear those kinds of things, but we do trust that God has a perfect plan for Ethan's life. It will be exciting to see what happens. His next appointment will be in nine months - the longest he has gone between appointments!

We have so much to be grateful for. I have mentioned Cora in previous posts and following her story the last few weeks has brought back a lot of memories of the scary times we experienced with Ethan. When he was 6 days old, we almost lost him. It could have been Ethan in that little casket at the front of the church. God spared his life and spared us so much grief and sorrow. I wish He would have spared Cora's life too.