Pre-Term Babies with NEC

Alda - posted on 03/01/2010

Stephanie, I'm in floods of tears reading you post. My twins were born at 28 weeks and at 3 weeks the one got very ill. She stopped breathing 15 times in one night! I was too scared to have lunch in case she was dead when I got back to NICU. We got a phone call (we live over an hour's drive from the hospital) saying that they're rushing her into surgery right away. By the time we got there she had just come out of theatre. She had a perforated NEC and had to have 25% of her small intestine removed. She had a stoma that was reversed after 3 months. She also had a huge PDA that contributed to the NEC. She had a PDA ligation 3 weeks after that. Today she is a fit and healthy 18 month old and I struggle to keep up with her.

My husband died in bed next to me so I know the pain from that. I haven't lost a child but came damn close, and I can just imagine it must be so much worse. If you need a shoulder to cry on feel free to send me a message.

Stephanie - posted on 02/24/2010

I'm writing in hopes to maybe find a single mother like myself that lost their very first child due to NEC .... I don't know how to find you but if your out there...please contact me...My sons one year birthday is coming up and I could really use a friend to talk with...I walked my pregnancy, alone...I spent 26 days with my son alone...and I've been dealing with this pain alone...the only comfort I have is from friends and my mother and I feel in my heart they truly don't understand...I just want to find you...I know you have to be out there somewhere. My email is SThompson0527@yahoo.com...facebook is Stephanie Hart Thompson. Please contact me, your not alone.

Elizabeth - posted on 01/17/2009

Thank you so much.  We have found out about the runny foods, he does well with anything not having a thickness.  He does need to eat a certin amount of solid foods though to keep his stools to a minimum (10-12 stools per day is min.).  We found that organic rice cereal has a thicker consistance then regular infant rice cereal, so that helps as well.  Thank you for the tip about the scarring when he gets older, I'm sure that might be an issue.  The thought didn't even cross my mind.  He also has to sit up after his bottles and any formula besides neocate gives him trouble.  We just count our blessings he is otherwise healthy and so very happy and with us here at home, not hooked up to a machine of any kind. 

Fleur - posted on 01/17/2009

hi im fleur,i had all my babies early ,my third euan was 7 weeks early and developed nec it was the worst time of my life,he went from 4lb 2ozs down to 3lb in a few days,pin holes everywhere,not being able to touch him and not knowing if he was going to make it,no food for over a week just tpn then onto nutriprem,he didnt need any operations and touch wood wont have,he wouldnt eat solids unless they were really runny anything thick he would gag,the bottle feeding i would have to sit him upright so it didnt all come back out when he layed down.when euan started school he developed an intolerance to cows milk and red food colouring,the only other problem he has is the pain when he catches a tummy bug becase of the scarring,but i would try really runny foods to start with