The kids

The kids

Wednesday, June 2, 2010

Bicuspid Aortic Valve

I had no idea what a "Bicuspid Aortic Valve" was...until today. A few weeks ago at little E's 1 year check-up her Pediatrician told me that he thought he heard a heart murmur at her 9 month check up, and that he was hearing it again at the 1 year visit. We also found out that our little lady, while in the 75th percentile for her height, is only in the 7th for her weight (our pediatrician wants her to gain weight, I think she should consider herself freakishly lucky). Anyway, our Pediatrician scheduled us an appointment with a Pediatric Cardiologist at the Duke Children's Hospital for today. Our Pediatrician told us that what he was hearing could very well be nothing but that he would feel better if we went to a specialist. So, we went.

Our appointment was at 9am and I think G and I were both thinking we would be on our way home by no later than 10:30 (in fact I was daydreaming about eating breakfast at one of our fave restaurants that is across from the hospital). We were wrong. After an EKG and a thorough exam by our Canadian Pediatric Cardiologist (which had we been done then, we would have been done at 10:30), we found out we were on to more testing. The doctor said that in addition to murmur he was hearing a clicking sound that could indicate problems with the valves in E's aorta. Therefore, he wanted Em to have an echo cardiogram (ultrasound of the heart) asap.

In order for them to do this, they needed to sedate Em since she is on the feisty side (just letting the doctor listen to her heart is difficult). So they pretty much got Em baby drunk until she passed out. **No mom they did not give her actual alcohol, just something that had similar effects. They promised she wouldn't have a hangover afterwards. Anyway, she fought it for about 30 minutes until she finally passed out. The nurse said she couldn't believe how much energy she had...she compared her energy level to that of a 2 year old...lucky us! It's not everyday you get to see your 1 year old drunk. So, we took a video. Don't judge us. I just happened to have my camera and we thought, why not. Warning: you may feel drunk watching it b/c you will have to turn your head sideways to watch it. When will I learn that vertical videos don't upload well to the blog?

It literally took 2 hours to get her drunk, get her to pass out, do the ultrasound, and then get back up to see the doctor again. As it turns out the doctors initial hunch was correct, Emerson has a Bicuspid Aortic Valve.

"A bicuspid aortic valve (BAV) is a defect of the aortic valve that results in the formation of two leaflets or cusps instead of the normal three. Normally only the mitral valve (bicuspid valve) has two cusps (instead of three); situated between the left atrium and left ventricle. Valves ensure the unidirectional flow of blood from the atrium to the ventricles, or the ventricles to the major arteries and veins."

The way it was explained to us is that part of her aortic valve is fused together (resulting in 2 leaflets instead of 3), which is what is causing the murmur and the clicking noise the Cardiologist was hearing. The fusion of the valve can cause extra stress on the aorta (aortic stenosis). Right now the additional stress the BAV is causing is minimal and considered to be very trivial. However, it is something we will have to follow for the rest of her life.

Additionally, because it is a congenital heart defect, that means that baby #2 is at a higher risk for a similar defect. So, I have to go back soon for a fetal echo cardiogram so they can take a look at his heart. Exhausting.

Sorry for the long boring medical lingo. But, it's our life. We will gladly accept all the prayers we can get for our little children and their beautiful hearts. We love these babies so much it is overwhelming and we find a lot of comfort in knowing that the Lord loves them more than we ever could. After spending an entire day at the Duke Children's Hospital, the Lord has also burdened my heart for the MANY families with extremely sick kids that are there. I started crying multiple times while we were in the lobby waiting, not because of our situation, but because of all of the kids I saw that were fighting for their lives. I couldn't think about how precious those kids are to their families and to the Lord and how he never intended them to go through this. How sweet the day will be when we are all restored in perfect health and perfect relationship with our creator. I am claiming that and rejoicing in that for those kids and their families.

I have been claiming Jeremiah 29:11 all day for us and our kiddos, "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you a hope and future." And at the same time I am acknowledging and rejoicing in the TRUTH of John 16:33, " I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

Lord we love you so much. Thank you for blessing us with these precious kids. We know that you are good, even though we live in a world with pain and sickness, we rejoice in knowing that you have already overcome all of that. In you, and only you, we have peace.


dusty and tammy said...

Oh my goodness! Prayers coming your way!

Hannah Alexander said...

praying fro y'all! And I would have been disappointed without a little drunk baby video, quite frankly. Thankful this seems to be a more minor hiccup and thankful you have a sweet girl with you and a little BOY on the way- YAY. That is just so, so fun. Can't wait to meet him!

Brianna said...

Hello there. I actually found your blog through a alert I have set up with google. My daughter was actually born with the same thing your baby has. she had her first balloon procedure about 2 months ago and is doing great. If you ever need any support or have any questions please feel free to contact me. I know it can be so overwhelming.

I thank God everyday that we found out about it before it was too late.

Take care!!

Tradd & Colleen Rodenberg said...

Goodness gracious!! We are definitly praying for you all as I know this is such shocking and overwhelming news. Now being a mom, I have a new appreciation as well when I go to work in the PICU and see all the pain these families are dealing with. Praying for healing of little E's heart! Also so pumped you are having a boy! Wahoo!

Joan Brantley said...

Our prayers are with you, Emerson,and the new little man!God bless you.