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Premature birth

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Original poster

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:
QED · 20/01/2012 14:22

Am thinking of you and Pinky x

cheekychubster · 20/01/2012 14:23

Hiya Badnails.

I have followed your posts from when your waters broke i was mishy mashy thenGrin

Its so good to hear Gen is still battling on and fighting back but you must be exhausted.

Ds grew gram ve rods (anaerobes) from cultures, as you can probably tell i have just copied that off of his notes as i was the same as you at the time and couldnt digest the overload of info! Apparently its quite unusual but i like to think that Ds is uniqueWink(Thats if its the same Grams as Ds)

Anyway, you know the outcome for us was very good after a terrible start so try and stay strong.

Ds was pumped full of a range of anti Bs, i think the main one was cefotaxime for 14 days but he also had bacterial meningitis so cant work out which drug was treating what! There are so many listed on his discharge papers.

Its amazing what our little ones deal with so dont forget to remember that you also need a bit of TLC when you get a spare 1 minute to yourself.

Hoping you have a very uneventful weekend.

bibbitybobbityhat · 20/01/2012 14:23

We are all absolutely willing her to get better. Well done BadNails, you are doing a magnificent job just holding it together for your baby girl. Don't forget that local Mumsnetters would, I'm sure, be happy to offer any practical help.

OhTootles · 20/01/2012 14:32

Thinking of you all, I've been in that hell, for a different reason, but still with a very poorly newborn. Thankfully it's all just a bad memory for us and I'm praying that it will be just that for you one day soon. xxx

No experience of that hospital but lots and lots of experience of scbu, childrens wards and picu and all have been fantastic. I couldn't fault one member of staff although it can be extremely frustrating as a parent and everything seems to take an age they gave dd the best care possible.

Keep expressing too, my encouragement to keep going came from knowing bm was the most gentle thing for her gut and the best thing for her immune system, but you already know that and by the sounds of it, 12 weeks in, are doing fantastically well xx

northernmonkey · 21/01/2012 07:30

Hope you and Gen are good today, badnails.

RockStockAndTwoOpenBottles · 21/01/2012 08:23

And how is Miss Pinky this morning? Hope she's improving and the antibs are doing their job swiftly. x

Original poster
BadNails · 21/01/2012 08:37

Morning northern, morning RockStock. I was going to update last night, but didn't leave the nursery until about half ten.

Our little lady has E coli sepsis and was started on new antibiotics yesterday evening. I'm not sure how quickly we'll see a change, it's dependant on a few factors. Her crp reached over 270, I'm pretty sure it should be around 4.

The shower here is useless. I'm pointing this out as a measure of my mental state i.e. I must be feeling better as I have now regained my ability to complain about unimportant things. I can't shake the tired feeling and that is in spite of getting some sleep. DP has praised the bed we have so it's not all bad :)

Our girl has got through another night :)

OP posts:
Original poster
BadNails · 21/01/2012 08:43

Thanks for your post cheekychubster, I've just reread it. Gen was on cef, although I'm not sure if they've continued with it. They were clearly concerned she may have had meningitis, but managed (with a lot of skill I should add!) to avoid using the word! Presumably to protect us as it is a bit loaded.

OP posts:
WillbeanChariot · 21/01/2012 08:57

Good morning. Glad to hear Pinky has come through the night, here's hoping for good progress with the new antibios.
Your post takes me back. I remember checking DS's CRP every day, and living in the hospital for days. Make sure you get out and get a bit of air when you can, just for a break. Hope you all have a better day family Nails.

Original poster
BadNails · 21/01/2012 09:04

Thanks WillBean. Isn't strange to get hung up on numbers? That's all I'm looking at now. I was just starting to not look at her monitors and to focus on her, to learn when things were changing based on her colour, her breathing.

:( Now I'm slowly understanding the ventilator and her blood gases.

OP posts:
youarekidding · 21/01/2012 09:20

Good morning badnails.

I hope now is the time to post this as you know what your dealing with. Do you remember when you PROMed early and I said about my cousins DD born at 23+5. She then contracted e coli at a few weeks old and needed to be ventilated. Her CRP was was up in the 4/500's. They also suspected menigitis.

Gen has fought a hard battle and it's unfair she has to fight a little more, and harder. But she's proved what a fighter she is and you've proved what a strong Mummy you are.

Keeping you all in my thoughts and prayers.

SaggyOldClothCatPuss · 21/01/2012 09:35

I'm so pleased Genevieve is fighting. Remember. She could have meningitis, but she hasn't! That's good. And just think, today is a new day. One day closer to getting her home. X

MABS · 21/01/2012 09:44

I am have sat in TMBU twice , both mine were very sick and prem. it is very hard not to look at the numbers i agree. Ds had all the infections you have mentioned, including the dreaded M word, a PDA, numerous surgeries as a tiny baby but he is now 11 years old! You really are in the best unit arounf and the Royal Alexandra is marvellous too. Stay strong, you are doing so well :) and I agree, the shower IS crap! I used one on maternity level i think .

queenrollo · 21/01/2012 09:49

I've only just caught this thread my lovely. I have been thinking of you and little Gen often though.
I'm sorry that things are tough for you right now, but Gen is obviously a fighter! And I think you are dealing with this admirably.

I haven't been there so cannot offer words of advice.

I'm going to light a candle for you and Gen in a little while and will sit and meditate some positive energy over to you
x

northernmonkey · 21/01/2012 09:50

Shes still fighting hard and that is fantastic. I'm sorry I don't have anything constructive to say as I dont really have any experience of prem, but I'm here just to offer support and tell you I am thinking of you all xx

fergoose · 21/01/2012 10:13

Still thinking of you here too :)

lucjam · 21/01/2012 10:55

Glad to hear shes still fighting on, bless her. Genuine offer I am very local and have just had a new bathroom installed with an awesome shower, if you want to come here for a proper shower and a nice cuppa you'd be more than welcome. I can pop over pick you up and drop you back no problem.

Bossybritches22 · 21/01/2012 11:05

Badnails so sorry to hear you are in this awful position with Pinky, she is obviously a fighter.

FWIW my niece had open heart surgery at GOS at barely a week old for a cardiac problem (not the same as Pinky I know) and was all tubed & wired up. It broke our hearts to see this wee scrap in such a mechanical/technical environment. It is hard not to look at the numbers and read all sorts of hidden messages into what the staff say.

My DN was a fighter like your Pinky & pulled through and is now a feisty 12 year old. I'm sending her the positive vibes and fighting spirit that DN had.

{{{Pinky}}}}

Carrotcakeisace · 21/01/2012 11:25

Thinking of you all, it's good you have a proper diagnosis and Gen is getting the targeted Antibs now. She has proven to be an amazing fighter already, everyday counts and she is one step closer to being home with you x

Pandemoniaa · 21/01/2012 12:24

I'm local and the TMBU is wonderful. Your little girl will get excellent treatment there. I'm sending the most positive healing thoughts across the Downs to you. x

CoffeeCamel · 21/01/2012 12:33

What a strong little daughter you have. Wishing continuing strength to her, and to you.

WillbeanChariot · 21/01/2012 17:00

Hope you have had a better day badnails. Oh blood gases, I remember those... DS had so many he stopped even waking up with the heel prick. He was ventilated for six weeks and I used to worry so much when the pressures went up. Gen will get her strength back and be off it soon I am sure.

GeekLove · 21/01/2012 17:07

Don't worry about updating us. You have far more important stuff right now. You and Pinky are in our thoughts.

Tiredtrout · 21/01/2012 17:54

Hey badnails, I've been following your threads. It's so good gen made it through another night, and it's brilliant that they know what it is now. I hope she keeps improving and you get to take her home soon

ZhenThereWereTwo · 21/01/2012 21:02

Glad to hear she is still fighting, I hope the new anti-biotics are doing their job and that she carries on improving.