Weird Day

So, yeah...today was weird. It was long, emotional, shocking, and also very humbling. Lets start at the beginning. Last month I took Carson in to his regular pediatrician for his 5 year old well child care check. Everything looked great, except for one small thing. His doctor detected a murmur as well as a name I can't remember which basically meant a clicking sound at the end of each beat. His doctor was a little concerned, he went on to tell me it was probably nothing but he would feel better if I got Carson into Primary Children's and had an echo cardiogram done on him. My doctor truly didn't seem overly concerned about it, he said heart murmurs in children are quite common....however it was the clicking sound that went along with it that made him want to have it double checked.

So, I made an appointment with a cardiologist at Primary's as soon as they had one available. 6 weeks goes by with me having that nagging little feeling in the back of my mind that something wasn't right. Not a fun feeling to have, especially when it is because of your child.

We headed down today, picked up Thiago at his office, went to lunch together and then on to Primary's. We got in and got the echo done...this lasts about 45 minutes. They then take us to an exam room, tell us they have all they need and the doctor will be in to go over the results. 45 minutes goes by, when finally another tech shows up. She says they actually need to run a few more. She hooks Carson up to more cameras and wires and then she leaves. Another half hour goes by, I am worrying...why would they come in for more tests unless the others showed something wrong. Finally a doctor comes in...he starts by listening to Carson's heart. Yeah, he definitely detects the same noises the pediatrician did. Duh! Yes, there were some abnormalities in his echo and he needs to go get his supervisor to listen in and explain. Great, he leaves...I am freaking. Trying to stay calm for Carson's sake but what the heck is going on. Another 20 minutes or so and both doctors come back.

Diagnosis.....Bicuspid Aortic Valve. What this means is this...the aortic valve is the part of your heart that pushes oxygen rich blood through and to the remaining organs of our bodies. Most of us have three ventricles or "leaflets" that make up our valve. Carson's heart only has two. This can cause three problems. The structure of an aortic valve with only 2 leaflets is completely different than one with three. The valve has to function differently in order to perform the way it is supposed to. The most common problem with this is the way the valve opens and closes. If it doesn't open correctly than you get what is called stenosis which is backed up blood in the heart. The heart can't open up and push the oxygenated blood throughout the rest of your body. This is obviously huge. Carson's opens perfectly. However it doesn't close quite right. It has a small gap when it closes rather than fitting snuggly. This can cause leakage, meaning some of the blood is pushed back into the valve. This really isn't that big of a deal.

What is a big deal is this. In some patients with Bicuspid Aortic Valve, the valve experiences an enlargement or dilation of the aorta. The wall of the valve is pushed out slowly over time. As Carson grows the dilation will grow. Slowly, but surely. This can result in an aorta aneurysm eventually causing the aorta to burst. That is obviously life threatening. Right now Carson's measure at 27 mm...where a normal valve would be around 10 or so. When it reaches 45-50 mm is when you start to worry. In most cases the valve will grow 1 mm a year. However in some cases it will be faster. Which means most likely this will not cause Carson any problems until he is older. We just don't know. For now he will go every 6 months to have another echo done...if it is growing slowly the way it is expected to do then all is well for now. Either way, he will have to go yearly for the rest of his life to have an echo done. If it grows to fast (throughout his teenage years and young adult) it could effect the way he exerts himself. Meaning no weight lifting, wrestling, football, running for long distances that kind of thing. We just will take it year by year and see if there are any limitations.

Now/when it reaches 45-50 mm, we start to be extra careful. He will start taking medicine to reduce the growth and if that doesn't work they go in and replace the valve. Yeah, heart surgery...this is where I started to cry. I felt like a bomb was being dropped on me. Sitting there with a cardiologist telling me my 5 year olds heart may some day need surgery. He was the nicest doctor. He went on to reassure us that this is worse case scenario. If it happens Carson will most likely be grown. As far as heart surgery goes this is the most routine surgeries of them all. It is something that they would never let get to the point of being dangerous, they would just go in and fix it. This surgery usually has zero complications and a full recovery and there is no reason to think Carson won't reach his full life expectancy.

So yeah, like I said a hundred emotions going through me. However, sitting there listening to all this and watching my happy, active, bubbly little boy who was oblivious to it all, truly filled me with relief and gratitude. Primary Children's is no place any parent wants to end up with their child. I sat there thinking of the other diagnosis and diseases and illnesses surrounding me in this hospital. I thought of children and their parents with problems far worse than mine. Does it scare me...yeah, I'm a mom and I was just told my child has a heart defect but it is managable, it is common and one of the easiest to correct. Their is by far, worse out there. In my heart I knew something wasn't quite right, mothers intuition I guess. However, I knew whatever it was we could handle it.

My heart goes out to those parents who are watching their children suffer with far worse. I don't know how they handle it. It hurts my heart. I love these babies of mine, all three of them. They are not only an extension of me, they are me. They are what consumes me. They are always on my mind and most importantly in my heart. I can't even stand the love between a mother and her child. It scares me, to feel something so consuming, so deep and indescribable. They are my life, and my biggest fear is something hurting them. I pray that never happens. I know without a shadow of a doubt I couldn't handle it, it would break me into a thousand pieces.

This is the longest post ever, but I never want to forget the emotions I have felt this day. Never in my life has my love for my child felt quite like this. Never has being a mom meant more to me than it did today. Motherhood is something else, its hard, it is tiring, it tests you over and over again. Not only do you worry about yourself for the rest of your life but you worry about these little ones and at times the heartache and the pain of it all feels like to much and I wonder how I can handle that kind of worry for the rest of my life. With each child you add on that feeling is just intensified. But then I looked into my 5 year olds eyes, we connected, he smiled at me and said "mama". And I knew in that moment, it is a love like no other....it is so deep and it truly can conquer all. And whatever heartache I face in this world because of them, whether it is an accident, or an illness, or a poor decision they make, or if they struggle with self esteem or with friends...or whatever it is. Whatever causes me to lay awake in my bed at night and worry and pray for them. It is all worth it, because I am theirs and they are mine. And there is no bond stronger than that, nothing that could tear them out of my grasp. So to you my three sweet babes...your momma loves you and thanks her father in heaven every day for her greatest gifts.