Eve has NEC & group B strep

[okciv]

Anyone else have a baby with these?

I am devastated

She's been in a cot, off oxygen, off all meds and starting to bottle feed & now this......

 

[25weeker]

Holly never had NEC but they suspected she had it a few times. Sometimes it was just a cpap belly and once she actually had sepsis.

Try not to google as it does nothing but scare you! I know a few babies who's was caught early enough and treated with antibiotics. As Bristol is a surgical unit I was in the Ronald McDonald house with a couple of parents who had 25 weekers that had stoma's put in due to NEC. One baby had his reversed around 36 weeks gestation and the other had his done around 2 months actual. Both babies are thriving and chunky wee monkeys. One actually has his first birthday on Saturday.

I hope Eve starts getting better soon.

Xx

 

[Bec L]

No experience but Hope she is better soon x

 

[okciv]

Anyone else got any experience?

 

[25weeker]

what are the doctors saying?

I hope there are others who can reassure you

Xx

 

[_Vicky_]

Hi ya - Fynn had NEC - he wasnt premie at 37+4 but as he is a twin it was linked to IUGR.

Ok the most important bit as you can see by my signature he is now a 25lb ten month old so no matter how shaky his life started out he is now thriving.

I will go into as much detail as you wish either on this thread or by pm (and please feel free to pm me as I couldnt find anything about NEC when fynn had it and was lost and lonely)

Basically he was diagnosed at one day old due to coffee coloured aspirates and no dirty nappies. They rested his stomach and put him on anit biotics for 24 hours but no luck so then they had to do the procedure for longer - he was on TPN and anti biotics for two weeks and then they reintriduced milk back very very slowly. He was born on 21st jan and came home on february 9th

I hope that helps xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx be stong xxxxxxxxxxx

 

[lil-star]

My baby had nec and the poor fella suffered, the treatment I'm sure as you know is off feeds & antibiotics. After 10 days they started him back off on feeds and started again.... It's hard seeing them going back so much but makes you feel so much better when you can say this time last week...

 

[okciv]

Well........

Eve has late onset NEC.

I was bottle feeding her at 10pm Monday night & she was a bit tired (as she would be learning to bottle feed) that was it.

Got a phone call from the NNU at around 11am on Tuesday to say Eve had an infection & I should go in - went in right away & she had a rash where her nappy had been & her tummy was swolen, she was really pale and crying alot (someting I'd never seen her do)
A completely different baby to the one I'd seen 13 hours before that!! Her heart rate was also high (she still has a PDA) & she was brachycardic & needing low flow oxygen (after about 5 days off it)
They sent x-rays to the sick kids hospital in Edinburgh and the surgeons confirmed today that it's NEC - they are happy for her to be treated with antibiotics (she's been on them since Tue am & will be for 10/14 days)
She is NBM for at least 10 days & on TPM. So her last food was the early hours of Tuesday morning.

I googled NEC and it scared the hell out of me.

To top it off she also has confirmed GBS - also late onset

She is almost 6 weeks old & I thought we were passed all this - I thought she would be coming home next week

I really cannot lose two of my babies and I am devastated. I've cried non stop since getting that phone call on Tuesday and really cannot cope with this.

 

[25weeker]

Google is def your worst enemy please try and stay away from it.

I would take it as a good sign that sick kids have said go with the antibiotics as they must think there is a high chance that will be successful. I know it's really hard to be positive. At 35 weeks Holly got her first set of jabs but in the same weekend she came off caffeine,went to 2 hourly feeds and had a cold. She had really bad bradys and required neopuff. They put her back on cpap and I was soo scared I was going to lose her. Thankfully after a day on cpap she was much better.

I know it will take eve longer than a day to recover from her infection but she is such a wee fighter she will get there after some antibiotics.

I am thinking of you both. Keep me updated on her progress.

Xx

 

[lil-star]

Did she take a bad reaction to coming off the caffine 25 weeker?

 

[25weeker]

They put her back on the caffeine for a few more weeks after that but not really sure if it was that or because so much happened her over one weekend.

 

[okciv]

One of Eve's lungs collapsed this morning........... one thing after another now

Eve got her last caffine on Monday also?

 

[TwoBumps]

One of Eve's lungs collapsed this morning........... one thing after another now

Oh hun, so sorry you are going through so much at the moment. I don't have any experience with NEC, but one of my twins did have a collapsed lung and it was thought to be a spontaneous pneumathorax (sp?) even though it happened shortly after he was ventilated. He recovered from it within a few days, so I am crossing everything that Eve will be the same.

I really hope that Eve recovers from all these complications soon so that you can get her home x x

 

[_Vicky_]

so sorry to hear about Evies set back - thinking of you and sending lots of positive thoughts xxxxxxx

 

[25weeker]

Sorry to hear eve has had a setback.

I hope she turns a corner and gets better quickly xx

 

[okciv]

she was going to be ventilated but picked up well so they left her on oxygen. It's off already & her lung looks back to normal on the xray - they think she breathed in some stomach acid
i really hope this is the worst over with now!!

 

[25weeker]

That's brilliant news.

Fingers crossed she will be back to her amazing self soon

Xx