Dear Noah........your cardiology visit.......

First of all Noah I am SO PROUD OF YOU! You did so very well for the EKG AND echocardiogram of your heart today! YEAH!!!!!! Here is a photo of you having your EKG done.....and you laid so still and did not scream and cry and have a fit like the first time 4 years ago.


The doctor today did also hear the murmur.......but she also heard this click/sucking sound and said the fact that you was born with low muscle tone...made her concerned there could also be something wrong with your heart.

So they did an EKG...that was fine.

They did an echocardiogram......and that showed your AORTIC VALVE was not right. There are supposed to be THREE leaflets in the valve to allow blood to flow to the aorta and out to the body. You only have 2 ...she said it looked like 2 of them had fused into one so you were probably born that way.

This means blood is not getting pumped to your body like it should all the time....and sometimes it leaks blood backwards.......etc. She also said that usually someone born with this will have tissue in the aorta itself that will not be right....which means it could eventually NARROW or BULGE OUT.......and that could cause problems. I don't need to mention that the AORTA is the biggest blood carrying artery in the body.

Anyway....we don't know if these are new symptoms for you....or something you were born with, for sure. We don't know if it has progressed or is the same and considered stable for now. They sent home a heart monitor thing I can put over your chest to monitor your heart when you have one of your spells where you say your heart is "pounding" in his chest. We do that if that happens for the next month, recording the beats on a special gadget they loaned us for a month and we call in the recordings.

You go back in 6 months for another ultrasound of your heart. If it looks the same we will monitor your. You will have to be monitored forever however....this will just determine how often. If things are not the same, we will tackle things I guess if and when we have to.

This will have to be monitored....because sometimes it can worsen....and this means surgery to try to correct your valve OR valve REPLACEMENT......and if the aorta itself becomes narrowed or bulges outward...she made it sound like there may not be much they could do for that other than trying to send a balloon via angioplasty up in there to open it up. Not sure if they can do anything if it bulges out..especially where your would be located...that then is considered an aortic aneurysm as far as I know.....and sometimes they can operate and fix it...other times not and you just live with it. This is right up inside your heart....right past the aortic valve....so that is different than when it is an abdominal aortic aneurysm. (She said this would be one of the most serious type of surgeries on the heart....and if Noah did develop a bulge/aneurysm and it ruptured....he would bleed to death instantly and die). Hence the monitoring.

I have some research to do on my end and more questions.

I am not sure if this means OPEN HEART surgery could be possible one day or if they could do it all via like angioplasty..some valve replacement surgery no longer requires open heart. The LOCATION of this may require it though...again I am not sure. I will ask questions and do more research and find out. IF you ever have to have a MECHANICAL valve you would then have to take blood thinner medication the rest of your life. If a tissue one....you could avoid that. Time will tell...
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What bothered me was the doctor kept reaching out and touching my hand and asking me if I was OKAY.....like why? Is this really really horrific news? BAD long-term outcome? Noah has no restrictions now...he can be as physically active as he wants..etc.

If he were to worsen it would be noticeable by him being more fatigued by exercise....which already happens...........shortness of breath or chest pain.....and fainting...because blood would not be getting to his body like it should.

SO.......we are finally home. My throat is sore......I still need to do some work after I make Noah some cookies. I did not do but about 1-1/2 hours before we had to leave this morning. We ran into construction at least 5 times......we still got there in time though.

I am going to pray for you Noah....please pray for him too. I am going to pray God will heal your heart and make it like new again.....so it will work well and be fine forever! You also HAVE to keep your mouth and teeth very clean.....any bacteria or sore throat viruses that travel into your system could settle in your heart causing endocarditis....not a good thing. They do not recommend antibiotics prior to dental procedures anymore she said...or put someone like you on antibiotics long-term...because of the side effects from the antibiotics .....they are greater than the helpfulness of the antibiotics in preventing damage to your heart.

so anyway.......

I love you Noah....forever I will!

mommy
XOXOX