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Premature birth

Connect with others and find premature birth support.

Anyone with experience of Trevor Mann Baby Unit in Brighton? PinkyNail is here, it could go either way and I'm scared

384 replies

BadNails · 18/01/2012 17:30

Are they good here? Do the nurses advocate for you? Or am I going to have to fight for her every step of the way? I'm slowly running out of fight.

They think she has NEC. She was doing so well, I can't believe it.

I'm on my phone, just waiting with DP. I need some hope. She was baptised today so I know I'm not in a good place.

OP posts:
PeanutButterCupCake · 07/02/2012 09:54

Shes beautiful badnails so tiny Smile
Born at 25 weeks Shock she has done soooo well and fought so hard.

Hope things continue to improve and your all home very soon Thanks

Lollyheart · 07/02/2012 09:59

Another lurker.
What a beautiful strong little girl you have Smile

MABS · 08/02/2012 18:14

how is she doing today? much love hunny x

BadNails · 09/02/2012 13:53

Just a brief update because I am so very tired. I've been at home since last night as I had DD1's parents evening (she is a star, naturally Grin) but last night Gen was seen by the consultant as she has spent the last two days moaning and groaning with colicky symptoms and was getting the worse. The final straw was an aspirate of 25mls - two and a half times her usual feed.

The consultant said to DP 'She is a hard case'. No solutions, no diagnosis. Thank you that is very helpful Angry

So I'll put it out to the floor - colicky symptoms, lack of bowel movements (needs a glycerin chip), greenish yellow stools, large aspirates a couple of times a day, skips a feed once each night at the moment. Should I be putting this down to simple prematurity, that favoured catch all? Can e coli damage the gut? Should I really just count my blessings??

MABS that is a coincidence - happy belated birthday to your DD :)

Bewitched I am sure you are neither an old fart nor an old hag Grin and besides I likes someone who likes a Wine but alas tea will have to go on hold as I want to see how Gen does over the next few days. However, as they are now increasing her feeds at snails pace we are going to be here for another month plus :( DP returns to work next week, so I'll need to have some adult/non medical company no doubt!!

MrsDistinctly thank you :) I don't 'know' anyone on MN. I lurked for years, occasionally posted, went through a couple of name changes and didn't really get involved properly, so to speak, until the week my waters decided I didn't need them anymore!

But thank you everyone. I particularly like the hand photo too (totally staged of course Grin) She weighs over 5lbs now!! Can't believe it!

Also, I have requested that this thread be moved into that less oft tread thread called Premature Birth. It belongs there really. I spent a lot of time reading message boards and not posting when Gen was small and before I had her. Maybe someone could gain some hope from our story and I don't want it to go 'poof'!

OP posts:
MABS · 09/02/2012 14:18

hi darling - so good to hear from you, all i can say that ds was totally like that in scbu and dd was totally different. Two of my very good friends are very senior consultants at TMBU, if you want to pm me i can you their names if you need advice/reassurance. Will defo sort that cuppa out when you need some adults company after dh back at work. take care you xx

BadNails · 09/02/2012 14:22

MABS, thank you. That would be appreciated (plus wouldn't want to think I was bitching about a friend of yours!!)

Hopefully in a couple of weeks, I'll be in a better place for a Brew

OP posts:
MABS · 09/02/2012 17:13

you can bitch away about a friend of mine honestly! Sure i have ;-) sEND ME A pm whever you can face it

BewitchedBotheredandBewildered · 09/02/2012 19:21

Thank you Badnails, you are very kind. I did feel a proper tit the next day! I did have a good excuse tho'.
Super news that Gen is 5lbs, even with skipping a feed every night.
Sorry to hear about the more worrying symptoms. It's a shame that medics can sometimes seem insensitive as to the effect of their words, I'm sure they don't mean to be.
I'm here for whatever, whenever. x

ChameleonCircuit · 10/02/2012 08:57

Has Gen been having breast milk? I only ask because when my nephew was bf, if my sister had a beer, he got colicky and mucusy (sp?). He was eventually diagnosed as coeliac. I am no expert, it's just that you threw it open so I thought I'd add that to the list of choices for diagnosis. Of course, if you're already GF then feel free to scoff and laugh at me.

Gentle cuddles sent for you and Gen.

johnworf · 11/02/2012 22:10

Hi. I'm a mum of ex 24 weeker. Is your LO taking anything for reflux? It really does sound as though that's what she has.

clabsyqueen · 12/02/2012 23:24

Hi badnails, only just seen this thread and from a quick scan through I can see you are having a bloody tough time but come so far too. My 28 weeker was almost out of the door after 9 weeks when no pooh+ dodgy x-ray+bloated tum = suspected NEC and she was swiftly sent back to intensive care and nil by mouth for 10 days. Pure hell after 9 tough weeks. Took another 10 days to get her back on full feeds. Had contrast study (no damage seen) Has glycerin chips. Strained to pass green watery stools. Reflux was terrible. In short - a tough case with no easy answers. All the younger doctors would sweat over every symptom but one very experienced consultant was so curt and dismissive about my little lady that I used to get upset. She was adamant that she had seen it a thousand times before and it would all come good in the end. She would almost roll her eyes when the registrars asked for another test. She would tell you YES!!! YES!!! YES!! this all down to prematurity and the solution for your little one is simply time. I really resented her approach at the time but having seen so many stories end the same way I thought I would share with you. I really hope it helps. This is not to underestimate the anguish that all these things can bring. I was still begging for a glycerin chip and higher doses of reflux meds as we were being discharged!

clabsyqueen · 12/02/2012 23:26

Hoping that all goes well got your not so little lady! 5lbs is a VERY respectable weight! Well done!

BewitchedBotheredandBewildered · 16/02/2012 14:04

Thinking of you all. Hope Gen's feeling better. x

dressmeplease · 25/02/2012 20:08

Hi badnails I just want to let you know you are still in our thoughts xxxxx

SaggyOldClothCatPuss · 25/02/2012 22:18

How are you and Genevieve getting on Badnails?

BadNails · 26/02/2012 16:06

What a difference a couple of weeks can make. Sorry for the delay and sorry if this is short but I'm one handed on my phone... whilst I breastfeed my baby daughter... in my bed Grin

Last week, after 120 days in hospital, we came home. Gen turned her feeding around in days and before we knew it, she was exclusively bf and then, there was simply nothing else to be done!

The only low point was her hearing test, where she failed both parts but it's our understanding that owing to her gestation she'd have been referred anyway. I don't feel worried. She's alive.

I don't plan to continue updating this thread. Our journey has been charted on here since my waters broke in early October and now, I shall return to my lurker status :) but not before I have thanked everyone who has willed Gen on and supported us. So, thank you. I'm sorry I didn't get to buy people that cuppa, especially Northernmonkey who truly touched my heart at one of the lowest points in my life.

And do you know, they never did get to the bottom of what Gen's problem was! Prematurity, I guess...

Thanks
OP posts:
ZhenThereWereTwo · 26/02/2012 18:17

Fantastic news, so pleased for you all, enjoy your time at home bonding as a family. All the best x

BewitchedBotheredandBewildered · 26/02/2012 19:06

Oh sweetheart that is so wonderful to hear. Thank you so much for bringing us up to date. I'm a little bit teary, in a good way.
Really fabulous news. Maybe we'll have that drink one day. xxx

SaggyOldClothCatPuss · 26/02/2012 20:18

What a lovely ending to such a long journey. I'm so pleased that you are home and happy. Good luck for the future and see you around. Xx

clabsyqueen · 26/02/2012 20:26

How great! :-)

dressmeplease · 28/02/2012 22:19

all I can say is wooooo hoooooo. So so pleased for you all. Good luck for the future xxxx

Carrotcakeisace · 01/03/2012 22:15

Brilliant news, I have been wondering how you were getting on so pleased you are both home and go Gen x

bibbityisaporker · 02/03/2012 22:14

Lovely! Big hugs all round and a little squidge for pinky.

bishboschone · 09/03/2012 12:30

I just wanted to say my ds failed his hearing test in scbu , he was born at 33 weeks . He later saw an audiologist and his hearing is fine Smile

Allthewhitehorsesarestillinbed · 13/03/2012 11:17

Just sneaking back under my nc... Gen's repeat hearing test was good. Slight loss in left in the middle ear believed to be caused her cold :)

We're doing really well and I'm still on cloud nine some three weeks later...

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