My son was diagnosed with multiple congenital heart defects shortly after birth. They believe he has them due to the control of my blood sugars during pregnancy (they were all over the place). This was a hard pill for me to swallow as I took it as my fault. But luckily this also means that they think he will grow out of them since they are not genetic.

As some of you already know, my son had a traumatic start to his life. I went into Labor and Delivery due to decreased fetal movement and not even a half hour after the ultrasound, I was in the OR having a c-section.

My son came out purple with an APGAR score of a 1 and was rushed to the NICU. There he was found to have a significant murmur so they ordered an echocardiogram (echo).

During the echo is when they diagnosed him with multiple congenital heart defects. First, his murmur (which the doctors said they “could hear across the room”) was caused by two holes in his heart. Second, he was diagnosed with hypertrophic cardiomyopathy which is the thickening of his heart muscle, specifically his septum. And lastly, he was diagnosed with a left ventricular outflow tract obstruction.

All of these defects resulted in tachycardia (increased heart rate) which also means that his heart was being overworked and not having enough time to completely refill. & with all of his other birth complications (respiratory issues, infection, etc.) his poor body was tiring out so they intubated him, placed two central lines to his heart and essentially put him on life support.

It was hard & it was scary.

His first week of life was a rollercoaster. No one knew if he was going to survive or not. But Finley never gave up.

He was in the NICU for 3.5 weeks and was sent home on only 3 medications (iron, vitamins and a medication for his increased bilirubin levels). But nothing for his heart.

Cardiology had us follow up a month later as they assumed his heart would continue to improve like they had been seeing in the NICU (he had 5 echos in the NICU). But what they did not expect was him to get RSV.

They believe this virus may have put a stop on his improvements and again made his heart overwork. So, when we went back in for his echo he again had tachycardia (heart rate in the 160’s), his obstruction was worse and the thickening was unchanged.

This was a complete shock as he was doing so well and we had talked to cardiology multiple times after he was diagnosed with RSV. They didn’t believe the virus would affect his heart and it was.

Sadly this also meant another admission into the hospital to start him on a beta blocker and to make sure he didn’t “bottom out” (beta blockers decrease pulse, blood pressure and can decrease blood sugars). Luckily his body reacted as expected and he was discharged after only 24 hours.

But now what does this mean?

It means that Finley gets a medication every 8 hours to help keep his heart rate lowered so that his heart is not overworked and that it has time to refill like it should. This also means increased monitoring with cardiology and more echos to come in the future.

This also means more worrying for Dad and Mom. All visitors must have a flu shot. & lots of prayers that his next echo will show improvement from the medication.

Cardiology is still optimistic that he will grow out of his congenital heart defects and that he will not be on beta blockers long term. But only time will tell.

Finley’s job now is to continue fighting like he has done the last two months of his life. & let us all hope and pray the medication helps.

#congenitalheartdefects #chd #chdawareness #heartwarrior