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

[BadNails]

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.

Thinking of you - don't give up hope. x

It is amazing that you are still expressing. And it is the best thing you can do because as Pinky recovers from this horrible illness she will need your milk to be gentle on her insides.

I know of a few babies who have been through surgery for NEC and come out the other side. One of DS's NICU buddies had a stoma that was reversed before she went home. DS had surgery for his PDA. It was utterly bloody terrifying but he coped very well. These babies are fantastically resilient.

Oh Badnails, am thinking of and praying for you and Pinky.

Sending a prayer for you and your baby.

Medical professionals never like to come across as very optimistic in these circumstances, but babies have a strength all of their own and it's amazing what they can achieve.

Positive vibes for Pinky xxx

Also sending prayers and good vibes.
Hope you get some better news soon xx

I'm thinking of you both. Sending prayers xxx

Have been around since your first thread. Thinking of you and sending you, dh and pinky all the strength in the world xxx

I'm sorry things aren't going better; will be thinking of and hoping for you and PinkyNail.

Sends hugs and prayers.

Sending Prayers for You, your Dh and little Pinky, hoping shes on the mend soon all my love.

I havent posted on your threads before but I've been following your story. Thinking of you and Pinky. Sending you big un-MN hugs.

Prayers to you and Pinky.x

Im from Brighton. My babies havent been at the TM but at the Royal Alexander.

However, Ive heard great things about the baby unit at Trevor man. Im in Lewes now, so I had a choice of having my 8 month old in Haywards Heath or Brighton. We chose Haywards heath so long as I was 37 weeks plus when he arrived. If it was before we'd have gone to Brighton because they are brilliant for prem babies, the equiptment etc. My midwife agreed to this.

I hope your baby gets home soon.

Prayers to you and pinkynails. x

Oh BadNails I didn't think they could get NEC at 12 weeks, so sorry. Hope they don't need to do surgery but if they do, remember the risks / stats for surgery outcomes are based on the infants who usually get NEC, i.e. the real littlies who get it at 3 days after their first feeds etc. Your DD has been fighting, drinking milk, breathing, getting stronger for 12 weeks - she is strong compared to the others who go through this.

Thinking of you.

Prayers for you, DH and little pinkynails. I hope you're all home soon xxx

Sending you every single positive thought I can muster, my DD is asleep in her bed upstairs, we didn't think she would survive her first week but she is here with us x

Badnails, I'm lighting a candle and saying a little prayer for Pinky, your teeny tiny precious girl.

Hold on.

xxx

Thinking of you all and will say a prayer for Pinky tonight.

Thinking of you all and fingers ever so tightly crossed xx

Hope makes a good recovery, you have both been through so much already x

Sorry should have been hope she makes a good recovery.

BadNails - lots of love to you, thinking of you all and have everything crossed. xx

I have lit a candle for your beautiful,strong baby girl.

And the pumping,i know it must feel fruitless,but it isnt,Expressing your milk is the best thing you could possibly do for her right now.

Hold on pinky.x

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

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]