Any NEC mommas?

caitdana

I have heard the term and gotten an explanation but I guess I have only gotten the breif highlights and tonight was the crappy in depth scary talk. Sophia had trouble digesting the extra calorie fortifier  and that was the first time we heard about it. She is doing well (still on lock down) but today was day 4 of 5 on spell count down. Yesterday Ella "coded" while I was BF Sophia. At first they said she just choked on her own vomit and today they are concerned it may be NEC after they have done a battery of tests. At first they thought it was just some poo in her bowels but now they are worried. My sweet baby cannot catch a break. It makes it so hard for me to get excited about Sophia home because my heart hurts for Ella.  So, of course I did the wrong thing and googled more just so I can know what to ask and understand better. Any momma's that have any positive thoughts?

Denesdia

I can't lie to you about NEC, and it's hard to be positive about it once you've been through a bad case of it.  With that being said, the NICU assessments every 2-3 hours will catch the indicators that will send NEC alarms ringing.  Our DD tanked after her PDA ligation.  All of her vitals were floundering, her white blood cells were out of whack, and the labs showed infection throughout her system.  She was  born at 25 weeks, and this was at one month old.  The nurses caught green bile in her aspirate through her feeding tube, and the regular check on her belly circumference showed distention.  She went right to xray and it was found that 2/3 of her large intestine was dead.  She went right to surgery, where the last little nub of intestine was pulled for an ostomy.  She had the ostomy until she got to @ 4 1/2 lbs., and then they reversed it before she came home (96 days total).  The NICU staff were preparing us for her to pass away because the NEC case was so severe.  I have read somewhere that a really high percentage of babies with NEC only need antibiotics for less severe cases.  Today, DD is 2 y.o. and has no lasting effects from her NEC.  She is teeny tiny, but I give that to genetics and being so early.  You and your LO's are in the best place to catch NEC and to do something about it if you have to.  Don't read up on it online, it will only freak you out.  I used a comprehensive guide to preemies in a book form that was normal and rational, but informative.  Let me know if you have any other questions.  GL!

Natalie_may

H had a perforation due to nec that was caught due to a stomach x-Ray. He has an ostomy and was on antibiotics for a while but he is now doing very well. The ostomy will be reversed before he comes home. It's very tough to see the ostomy and clean out the bag but I am so thankful that it is a temporary situation. He also desats and bradies much less than his brother, partially due to his belly not being able to get too full. I hope everything goes well for Ella and that she joins her sister at home soon!

OscarQ

I'm sorry that Ella is having such trouble.  Right before Kevin's PDA surgery they thought he might have NEC.  I did the same thing you did - googled it and scared the hell out of myself.  Unfortunately I already had an inkling of what NEC was so my face dropped when it was first mentioned to us.  Poor DH had no clue but could tell by my reaction that NEC was not something I wanted to hear.

That being said, it didn't turn out to be NEC so I hope the same thing is true for Ella.  Fingers crossed that it turns out okay. 

njdcgirl

NEC is so scary, because they don't know what causes it, and it CAN progress very quickly.  Like the pp'er mentioned, they are always on the lookout for it, and will act immediately (xrays, lab work, stop feeding) if they suspect.  Andrew had a NEC scare just prior to discharge, and it bought him an extra three weeks in the NICU.  While they never officially diagnosed him with it, they treated him like he had it (v. strong antibiotics for 7 days, no oral feeds (only TPN) for 7 days, freqent xrays - like every 3 hours in the beginning).  We are very fortunate that it never progressed. 

I know that even with official diagnosis, there is a WIDE range of the severity of it - from just treating with anitbiotics to all the scary things I'm sure you read about online.  I hope Ella's case is mild and that she's back on the mend soon.  I'll be thinking of you all ((HUGS))

twobytwo2010

NEC is not a thing good and it is hard to find good things about it. Don't google ask the NICU for a book about it. One of my girls had it and ended up having part of her large intestine removed.(She also had TTTS and was the donor twin which makes it worse since she was born weaker) She was in the NICU for 9 weeks. Then went back into childrens for a couple of days due to not gaining weight from the NEC. Some kids do just fine on some meds and have no lasting effects. We have had a few lasting effects that we are hoping that as she gets older they will go away. PM me if you want more info. Good Luck hopefully it is a little scare and she will do great.