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4/4/2016 Latest post:
Milo has been diagnosed with congenital heart defects called an ASD and VSD. We knew about the VSD before he was born- they found the hole in his heart during an echo ultrasound. All babies have an ASD when they are born, but usually that hole will close as the baby breaths on his own and lungs pressurize. Milos holes did not close on their own.
The main issue with a VSD is the baby is not able to gain weight, that is what they watched the most. Babies with VSD get tired easily from the constant recycling of oxygenated blood from the lungs, through the hole, back into the lungs- the oxygenated blood never makes it to the body. They burn extra calories with all the excess heart pumping.
The baby can't gain weight because his heart is working overtime and the baby has to choose- breath or eat. Obviously he will choose breath every time and then take a nap!
He has been visiting a pediatric cardiologist weekly for weight checks. He lost weight in the first few weeks, as all babies do. Then he kept losing. His treatment consisted of a blood pressure med (to help his blood go out to the body instead of traveling through the hole and back to the lungs.) a diuretic to help get the excess fluid out of his lungs, and a high calorie formula, like a thick malt of milk.
This combo helped him gain weight for the next 2-3 weeks! We were thrilled it seemed to be working.
Ideally we wanted to wait for surgery, which was inevitable, until he was 6 months old and weighed at least 10 pounds. Sometimes these holes do close on their own, so we wanted to play the waiting game and see if we could get him bigger and stronger.
Unfortunately, out of no where, Milos heart decided it was just way to much work to keep up. His heart began failing and there's no turning back now.