Our Heartspun Homeschool

Our Heartspun Homeschool

Thursday, March 6, 2014

Please pray for my Henry!

When Henry was 5 days old our wonderful pediatrician sent us to the pediatric cardiologist because he heard a heart murmur (VSD). Once there Henry had an Echo and an EKG.. they told us to treat him like a normal baby and bring him back at 3 months to see if it was closing. When we went back he had another Echo and an EKG, his murmur was still there but they also saw that his aortic valve was bicuspid instead of the normal tricuspid, meaning his valve only has two leaflets allowing blood to flow through instead of the normal three. It is called a Bicuspid Aortic Valve. It is a highly genetic defect and a lot of people are born with it. Most people do not know they have it or show problems from it until their 20's or 30's or even later in life. This is unfortunately not true for Henry. He already is having aortic stenosis. Which means the valve is narrowing and is making his heart have to work really hard to pump the blood through. He is being monitored every 2-3 weeks with Echo's and EKG's. The doctor checks his pressure gradient each time..the highest it has been is 73, about ten days ago it was 63. Normal should be in the 20's..50 or above he needs surgery ASAP..the doctor is hoping to see his gradient go down as he grows, which is why we are still waiting and re-checking. He goes back next week to be re-checked, if nothing has changed or his gradient is higher he will be going in for open heart surgery ASAP to either fix or replace his aortic valve. If it has gone down I have a feeling the doctor will do more waiting and seeing. If he has improvement now and doesn't need surgery right away the doctor said he will need the valve fixed before the age of 8..so surgery is a given. If he has surgery now, he should be good to go until about the age of 20..where he will most likely need another valve replacement. Please keep Henry in your prayers- we are hoping he doesn't need surgery yet, even though the doctor said his risks are the same now as if he was 2 yrs old. He is just so little (still too little at his massive 16 pounds..lol) and the doctors would like him bigger for their benefit. This is all super scary for us, I am in a constant state of anxiety making sure he isn't turning blue or sweating for no reason (both signs that his heart is not doing good).  Pray his heart would heal and pray for us. We go back next week to see how things are going. I will try to keep everyone posted on our next steps. His GERD is also still doing very badly. He is on Prevacid, which is the highest PPI medicine he could be on..every day is really hard with him but we are surviving. Thank you for your thoughts and prayers!

My Henry!! Such a sweet boy!


Angela said...

What a precious little guy :) I prayed for both you and Henry...and also for wisdom for the doctors.


Em said...

The fact that he is so big is a good sign for him. Heart babies are usually small. But it is also true that waiting as long as possible is a good idea. I hope things progress well with Henry. Please keep us updated.