By Corey’s Mom, Jaime
My son, Corey, was born at 35 weeks and diagnosed with congenital
heart defects and DiGeorge syndrome, a primary immune deficiency syndrome. As
an infant, he tired easily when feeding, but between breast milk and added-nutrition,
he was able to gain weight and was slightly chunky until the age of four. After
that, it became a battle to get Corey to eat and gain weight. Corey never had much
of an appetite and getting him to eat is always a challenge. When he was around
10, his growth came to a halt. He did not gain a pound for three years! He was always
below the normal growth curve but was able to stay on his own curve for several
years. The last few years, however, he fell off that curve and was considered
malnourished.
Keeping Corey strong is crucial for he needs many surgeries.
By the age of four, Corey has had three heart surgeries and one brain surgery.
He has a donor heart valve and it needs to be replaced approximately every 10
years. Corey is now 14 years old. Last year, we found out Corey also needs back
surgery and the orthopedic surgeon said he could not perform it in Corey’s
current state. Corey’s cardiologist referred us to a dietitian. Together, we
spent approximately nine months trying to enhance his calorie intake. The
nutritionist dietitian eventually suggested a feeding tube as we were not able
to get him to gain weight with oral nutrition. On January 5, 2018, Corey had a
NG tube inserted into his stomach by the nutrition support nurse. Corey
has done FANTASTIC ever since. In six months, he’s gained 7 pounds! That
is HUGE! I’m hoping with his continued weight gain, Corey will be strong enough
to tackle his next set of surgeries.
Corey and I know he will have the NG tube for as long as he needs
it; until he can eat enough calories each day to gain weight and grow strong. I
am guessing that will be quite a long time as he only eats two small meals a
day. His burns so many calories that it requires around 1,400 plus
calories for him to gain weight slowly. Corey is an amazing fighter and NG tube
feeding is keeping him nourished, allowing him to grow and face his physical
challenges.
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