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

(385 Posts)
BadNails Wed 18-Jan-12 17:30:06

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.

NatashaBee Fri 10-Aug-12 00:18:57

So glad everything is going well... Great update!

themadfiddler Fri 10-Aug-12 00:16:17

how lovely smile i am very happy for you badnails

Thankyou for updating, Badnails. When I joined MN you were just detailing all of this, so I am really glad to hear that things are now on the positive side.

Both Gen & you have been amazing! x

BadNails Tue 07-Aug-12 21:33:53

Hello, yes, still here but have reverted back to lurker mode the last few months. I do still pop onto the Prem thread from time to time so was pleasantly surprised to see this one at the top smile

I am more than happy to update! I actually think it's important for those in NICU to see/read what happens next - I know I needed to believe there could be a life outside of the incubator, there were so many days where I thought we would just stay there forever like in stasis.

Gen is just over nine months actual age now, roughly six months corrected. She is still on the wee side at a little over 13lbs but she is (proud mother emoticon) doing bloody amazing grin

Milestones are being met, food is loved and she is just a very happy, chilled out baby. Of course we have appointments with physio and audiology coming up and I long for the day when she is just 'ours' but it's a small price to pay considering the alternatives.

I still have fleeting moments of darkness, it's very similar to the worry that all parents have about their children but this is different to how I feel about my eldest in that it's tinged with real fear, the knowledge that comes with seeing your child in hospital. I cannot go near the memory box. I can only just about look at the photos.

It's nearly ten months since my obs consultant offered me a termination. When I look at Gen (and I am now, she's right next to me) I can't believe we lived through that. I can't believe how lucky I am smile

Thank you for the well wishing x

themadfiddler Mon 06-Aug-12 11:22:19

just read this thread all the way through. how amazing that she is home, what a wonderfully strong child. and you are incredible too! i wish you all happiness smile would also love to know how she is doing

I know that the very hard journey Badnails had to make was recorded here and she has said that this thread is 'put to bed' but I was wondering if she's still on MN, and how they all are now?

BewitchedBotheredandBewildered Wed 28-Mar-12 18:33:52

More good news, long may it continue. x

beatofthedrum Wed 14-Mar-12 19:57:36

Wow, so amazing for you both. Very happy to hear such good news.

PoppadumPreach Tue 13-Mar-12 17:37:28

I've been lurking. so so pleased to hear your news.

all the luck in the world to you and Gen! xx

Allthewhitehorsesarestillinbed Tue 13-Mar-12 11:17:50

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 smile

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

bishboschone Fri 09-Mar-12 12:30:31

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

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

Carrotcakeisace Thu 01-Mar-12 22:15:33

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

dressmeplease Tue 28-Feb-12 22:19:36

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

clabsyqueen Sun 26-Feb-12 20:26:45

How great! :-)

SaggyOldClothCatPuss Sun 26-Feb-12 20:18:51

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

BewitchedBotheredandBewildered Sun 26-Feb-12 19:06:21

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

ZhenThereWereTwo Sun 26-Feb-12 18:17:41

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

BadNails Sun 26-Feb-12 16:06:21

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 smile 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

SaggyOldClothCatPuss Sat 25-Feb-12 22:18:23

How are you and Genevieve getting on Badnails?

dressmeplease Sat 25-Feb-12 20:08:16

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

BewitchedBotheredandBewildered Thu 16-Feb-12 14:04:48

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

clabsyqueen Sun 12-Feb-12 23:26:56

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

clabsyqueen Sun 12-Feb-12 23:24:40

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!

johnworf Sat 11-Feb-12 22:10:41

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.

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