Friday, June 10, 2011


Three.  That is the number of heart defects they found today in Finn's heart, and the worst part is, the doctor we saw couldn't even see everything so there could be more. He also couldn't tell how bad the issues were, which is not uncommon on little wiggly babies, but needless to say, we left there and while I waited for Finn to get his bloodwork, I called my children's cardiologist and got an appointment for next week.  Sadly this cardio was more concerned with there being a genetic link since we have so many cardiac issues than with what was wrong with poor Finny.

So here is what I know.  Finn has a leaky aortic valve, although the cardio was pretty sure it was a minor leak.  We have no history of aortic valve issues, although Teagan has a malformed pulmonary valve.

He has some aortic stenosis which is a narrowing of the aorta above the valve. This is what I have.  I know what this means long term, if it is severe it requires open heart surgery, if it is mild and manageable like mine, it requires monitoring and limited sports and activities.

He has pulmonary stenosis of the arteries, this is a narrowing of the pulmonary arteries and does not include the valve.  Haven had this in one artery in Finn both are affected and he could not tell how badly they were affected.  A common correction for this is an angioplasty.  We do not know if the valve is impacted yet, that would be a surgical need.

We do not know if the aortic arch is impacted, and coarcation of the aorta is a concern of mine as it is dangerous and can be life threatening.  I am anxious to have an all clear on the arch next week and to find out if there are any other defects and how severe the ones he has are.

I am incredibly sad, and angry, that we are dealing with this in another child.  Haven has outgrown her issues which were Ventricular Septal Defect (VSD) and pulmonary stenosis, and I am thankful for that.  Teagan needs her valve rechecked and we are all hopeful that she will be cleared as OK. But Finn, I am not sure about, this is a bad group of issues and I fear he will need surgery at some point and that frightens me.  I have a great team of cardiologists that we have been with since Haven was born, and I trust them immensely, so I know they will do all they can to determine what is wrong and how to handle it. 

My poor guy, he is so sweet and didn't even whimper when they took his blood.  Even at 6 months old that kid is a trooper.

We also had the blood work done for a metabolic screening and we should get the results today.  We are curious about the blood sugar issue from yesterday, and all I can hope is that it was a fluke issue and he had a seizure because of a random low blood sugar moment.  We will see.

I let it roll as much as I can, I don't complain about the health issues with our kids, I just deal with them, but not knowing makes me crazy. I know it could be worse, so much worse, but I wish we didn't have to face the multiple cardio visits, the worry the first years as they grow and the constant watching and waiting to see if something happens.

No comments: