Archive for October, 2013

Survivor and 19 years old!

October 30th, 2013 by Hunter

I was born 4 months premature and had NEC ( as well as a hole in my heart that they fixed, leaving me with a scar on my left shoulder blade). Of course when I was finally old enough to begin asking questions about the scar on my stomach, and a few scars near it, my mom explained it to me. I have been researching more into the topic, long term effects of NEC etc. But as I’ve grown up, I love my scars and am proud to wear them. Without them, I wouldn’t be alive today.

I am 19 years old now and will be going to Art school next year 🙂

Baby Penelope’s Survival Story

October 30th, 2013 by Aimee Alexander

Penelope’s start was a normal one. She arrived after a 39 week pregnancy and normal vaginal delivery. She was diagnosed with NEC at 10 hours old. They said it was due to an E. coli infection, but we still don’t know how it made it to her gut in such a short time frame. She never fed before diagnosis. Her symptoms were grunting and high glucose level (over 300, which is 3 times normal). The doctor suspected NEC, ordered an abdominal X-ray, and saw signs that most of her large intestine had pneumitosis (gas in the bowel walls) that is indicative of NEC. We were extremely fortunate the neonatologist recognized the signs so early.
Luckily, her bowels did not rupture, and she had surgery to remove the dead bowel tissue. The tissue was confined to half of her large intestine. She had a colostomy for about 6 weeks. Then, the surgeon went back in and rejoined the healthy parts. She has about 20% of her large intestine left. Her small intestine was not affected as far as we can tell.
Penelope was in the NICU for over 2 months, and those were the longest 2 months I’ve ever known. First, we worried her intestines would perforate. She was already in septic shock, so we didn’t know if she would make it. Then she made it through the surgeries. Next, our focus was on seeing if she can tolerate feedings being off the IV nutrition and being fed via an NG tube. She did. The next 5 months, we were on a mission to do all we could to help her get of the NG tube. She was gaining weight from the nutrition via NG tube, but she refused the bottle. Each bout of vomiting scared me into thinking there were more complications going on. When she got a GI bug, she had diarrhea and we had to be sure she wouldn’t get dehydrated. She was constantly taking Imodium and Nexium. By the time she was 7 months old, we weaned her off the NG tube, but she never would eat the volume of formula that the doctors said she should. We were lucky, once Penelope started solids and the liquid volume was less, she gained weight like a champ.
She is now 20 months old and is a survivor. She dances, tells me “no,” loves Elmo, and eats most anything you put before her. Only lactose and a handful of foods don’t agree with her. It has taken me this long to write her story. I owe the brave parents who shared their experiences with NEC to let us know we were not alone. The young adults who wrote their stories of having NEC gave us hope. We want Penelope’s story to give others hope. She’s your typical toddler who knows where her belly button is as well as her belly scar. She’s ticklish there, and we thank God every night that we get to tickle her.