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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.

BadNails Wed 18-Jan-12 21:30:09

Thank you everyone. And I really mean that. MN good vibes are really helping me tonight. I have an update of sorts. Boils down to carrying on watching and waiting, but the night shift consultant has a theory that it could be a reaction to anti reflux meds (gaviscon/ranitidine). The scan of her gut shows areas which have 'clogged up', the highly medical term 'cement' was used! The meds sometimes react with stomach acids and solidify. Who knew?

The positive news is there'll be no surgery for the moment. They're reasonably happy her gut still looks intact and bar the cement and some dilation, fairly healthy. It doesn't explain why she's on a vent, her bp is low and she's awaiting her third transfusion of the day.... Sepsis is what they thought 26 or so hours ago and they're moving towards that again.

I'm almost at a loss now for what to do. My dairy free diet just slipped up with the bloody awful sandwich I just consumed angry

Before I start banging on about expressing again, I'll stop here. My poor girl. She's made of stronger stuff than I am [proud emoticon]

AtYourCervix Wed 18-Jan-12 21:32:41

she gets her strength from you.

MrsJoeDuffy Wed 18-Jan-12 21:35:18

Also lighting a candle for little Pinky

northernmonkey Wed 18-Jan-12 21:42:27

She sounds like a fighter.
I'll be thinking of you both tonight and will check back in the morning. Remember, if there is anything you need, anything at all, let us know. I will be passing that way at least 4 times tomorrow smile
Hope you manage to get some rest tonight and sending positive thoughts to pinky x

Sevenfold Wed 18-Jan-12 21:45:00

thinking of you all.
my dd was in the trevor man and it was a brilliant place. will send a link to the MNetter who really knows the place.

WillbeanChariot Wed 18-Jan-12 21:47:52

Fingers crossed the night brings better news. It's great that they think her gut is intact. If it is infection, I hope the antibios kick in. I remember being told, they can get very sick very quickly with infections, but they can bounce back very quickly too. I hope that is the case for you.

Rant away about sandwiches and expressing. whatever helps!

CervixWithASmile Wed 18-Jan-12 21:50:50

Thinking of you, you both sound like fighters.

jingleyells Wed 18-Jan-12 21:52:34

Hi, I was a senior staff nurse there for 10yrs. It's a really great unit, with well trained and conscientious staff.

Lots of cases of NEC can be treated without surgery. I'll keep my fingers crossed, but she honestly couldn't be in better hands.

SaggyOldClothCatPuss Wed 18-Jan-12 21:54:18

Oh Bad, I was hoping for an update, I was there for your birth thread. I'm so sorry Pinky isn't well. I've just googled NEC, and the main part that stuck out for me is, "Most infants who develop NEC recover fully and do not have further feeding problems".
I don do prayers, but I'm sending you positive vibes and a virtual {{hug}}.

JsOtherHalf Wed 18-Jan-12 21:55:00

Thinking of you x

struwelpeter Wed 18-Jan-12 21:55:03

We were in TM a few years ago. They were marvellous - caring, concerned, calm supportive. Good luck and keep strong both of you.

WhoahThereCrazyHorse Wed 18-Jan-12 21:57:26

Sending positive thoughts xx

pollilop Wed 18-Jan-12 21:59:22

DH and I brought our DD home from TMBU this time last year so have relatively recent experience. We found all the staff there to be fantastic - I'm sure they'll be doing their very best for your little one. I know it's scary, my thoughts are with you. x

KD0706 Wed 18-Jan-12 22:00:14

badnails I just wanted to post to say I'm thinking of you and remembering you and pinky in my prayers.

I was on your thread back when your waters broke. You are doing so well and being so strong. I know it's hard, but honestly you're doing great.
Well done for the expressing. There is a point to it. Your milk is the best thing for her and you are being a fab mum by doing it for her.

I hope tonight/tomorrow morning brings better news for you.

TeamEdward Wed 18-Jan-12 22:03:06

Message withdrawn at poster's request.

ToothbrushThief Wed 18-Jan-12 22:09:05

I don't normally say this on Mn but I have prayed for your baby and you. i hope you are given the strength to bear this time and your baby comes home soon.

awhistlingwoman Wed 18-Jan-12 22:10:20

badnails Just wanted to say that I'm thinking of you and your little Pinky. I'm so sorry about the suspected NEC, it's great that they think her gut is intact though.

My little girl developed sepsis in the NICU and she made a full recovery. She was baptised in hospital too. It's just such a scary, tough time and my heart goes out to you and your daughter.

I remember being told the same thing as willbean that they can get ill quickly but that they can also make a fast recovery.

And expressing . . . oh groan. I found it so difficult to just. keep. going. after the first couple of months.

Hang on in there and sending you and Pinky all the very, very best.

WillbeanChariot Wed 18-Jan-12 22:18:46

I'm off to bed but still thinking of you all, and will be thinking of you when I wake up. Will check in tomorrow, hoping for better news.

Come on Pinky.

Tiggygirl Wed 18-Jan-12 22:31:25

Thinking of your precious Pinky and sending love to you all .xxxx

DeeCrepitude Wed 18-Jan-12 22:53:05

Praying for a good outcome tomorrow. Hope you get some sleep.

GeekLove Wed 18-Jan-12 23:36:53

Fingers crossed. Can't do much other than offer my prayers.

mancbird Thu 19-Jan-12 00:40:08

Pinky sounds like a little fighter. I'll light a candle for Pinky and your family xxx

Gauchita Thu 19-Jan-12 00:41:53

Badnails, I followed your previous thread. Thoughts and prayers going your way. PinkyNails is a fighter.

SpannerPants Thu 19-Jan-12 02:09:46

Thinking of you both and hoping for the best x

MABS Thu 19-Jan-12 07:09:15

thanks for pointing this out Sevenfold . Badnails - TMBU Is an incredible place. My two children would not be here without it, nor would my goddaughter. I do a lot of support work and fundraising for TMBU so know quite a lot, ask me whatever you want or pm if easier. 2 of the lead consultants are good friends of mine as is a very senior nurse. The staff are wonderful, very approachable and are happy explain things over and over again.

Let me know how today goes, i am sometimes up there but as it happens no plans for next couple weeks. Please let me know if there is anything you need, would be happy to pop up. love and parayers xxx

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