Possible NEC???

[Jen1802]

Does anyone out there have any experience with a preemie with NEC? The doctors were slightly concerned Juno possibly had an infection of some kind yesterday but her results came back ok. Then this am they said she had a really mucuous type poo which they were slightly concerned about and kept mentioning NEC. They've retested her bloods which seem fine but are waiting bacteria culture test results which probably won't be back till tomorrow. They started her on an iv antibiotic this pm just in case. I'm so scared she might actually have this as all the information I could find on the internet was really quite morbid and I'm just terrified now....just when everything is going well something has to happen

 

[25weeker]

I have no personal experience of NEC although they were concerned Holly had it a couple of times but didn't. If caught early enough it's usually treated with 10 days of antibiotics and no feeds. The first nicu unit I was in was a surgical one therefore there was quite a few babies who had stoma's due to NEC. From the couple of people I was friendly with one had his reversed at 35 weeks and the other at 6 weeks corrected. Both are thriving now.

I hope your lo gets better soon xxx

 

[Jen1802]

Thank you! Its good to know if its caught early it can be treated with just the antibiotics...everything I was reading online was going on about 25% morbidity rate and it resulting in preforations in the bowel...I rang the hospital there to see how she's been since I left this afternoon and she's been behaving herself! A few loose bowel movements but no mucous thank god! I hope its down to a simple infection which will go away and nothing as serious as nec! xo

 

[mummy to be86]

hi jen1802
my little boy thomas had nec he didnt have antibiotics but needed to be transferred to st marys to have 10cm of the bowel removed he now has a stomia and when he is older it will be reversed when he has put enough weight on, thomas developed nec as he had some ibuprofen for his pda which did close it but once he had the surgery it reopened so we was back to square one it is still open but not causing him any problems. I hope this helps as I did read up on nec and it the worse thing you can do as I didnt see many successful stories.

 

[Jen1802]

Thanks mummytobe I think I'll be avoiding the google search engine at all costs in future! It does nothing but make me worry ten times worse! I'm so glad your wee man is doing well though. xo

 

[toothfairyx]

We had one suspected nec scare, which turned out to be a false alarm when the results came back. I was terrified too after reading stuff on google about it, probably more so than any other complication as it all sounded so grim but then you read positive stuff here of people who have been through it, and you will get better insight from them.

 

[aidasmom]

I lost my daughter (32 weeks gestation) back in August from NEC.
It can be a very nasty condition that sneaks up really fast & some times there is nothing left to do. Unfortunately for my little girl, she got too sick too fast for surgery or a chance at recovery.
I hope you're little one will be OK

 

[Jen1802]

I lost my daughter (32 weeks gestation) back in August from NEC.
It can be a very nasty condition that sneaks up really fast & some times there is nothing left to do. Unfortunately for my little girl, she got too sick too fast for surgery or a chance at recovery.
I hope you're little one will be OK

OMG aidasmom I'm so sorry you lost your little girl! I can't even imagine what you've been through since August. Juno seems to be doing a lot better since starting the antibiotics. Her desats and apnea periods have vastly decreased and she's stable enough to hold again. Thank you for sharing your story, its a stark reminder that our preemies are so fragile and things beyond ours and the medical team's control can happen. I'm so sorry again for your loss. xo

 

[_Vicky_]

MY son had NEC (he is on the left in my sig pic) he wasnt preemie (born 5lb12 @37+3) but it can be linked with restricted growth in multiple pregnancies. He wasnt passing anything at all at birth and had scans. They put him on a TPN line for 48 hours then reintroduced milk - it didnt work. They then rested him on TPN again for ten days which did the trick he came home three weeks later. he didnt need any further help and has had no lasting effects at all. PLEASE dont google all I could find was awful awful statistics but Fynn is a NEC survivor so take heart my love.

You post has brought back all the emotions of NICU and I really really do send all my love and strength xxxxx

 

[vermeil]

aidasmom we`ve spoken on other forums - i`m so sorry for your loss. There are no words *hugs*

My son had nec also, his stomach swelled up like a balloon (to the point that little veins burst so he had bruises) and he had severe jaundice so he was almost green - he looked so pitiful (we would call him our little shrek heh - sounds awful but sometimes you just have to make light of the situation). It took 4 attempts spread out over weeks for him to accept milk. He had multiple runs of antibiotics and thankfully it eventually cleared up on its own, no surgery. It really was scary but it`s (unfortunately) common in preemies so the medical staff know how to treat it.

Keep us informed!

 

[Jen1802]

Well thank goodness it wasn't nec. It was an infection but they couldn't tell me what had caused it or even where exactly it was! Just reminded me that sometimes medical professionals can't find all the answers we're looking for. Juno has just completely turned around since getting antibiotics...hardly any desats, heart leads off and just the oxygen monitor left on and best of all after over 7 weeks in an incubator she was moved into an open cot this afternoon weighing a respectable 3lbs 15oz! xoxo

 

[25weeker]

Great news it wasn't NEC.

When the girls were born the consultant said to me it would be extremely rare for an extreme prem baby not to get an infection. When they suspect infection they usually start antibiotics before doing anything and I was told this is why more often than not they never find out what the actual infection was.

 

[Jen1802]

Thanks 25weeker I didn't realise that could be the reason why they didn't know what it was. It makes sense now actually because they started antibiotics before they had even got the results back to make sure there was an infection. I do remember the nurse saying that they would start them as a preemie can go downhill in a matter of hours and there was no point in waiting on the results. xo