Hand holding from anyone with similar experiences would mean the world to me....

[GotMyLittleLamb]

Hello,

So on the 8th Feb I had an emergency c-section as I had pre-eclampsia which rapidly descended into HELLP syndrome. My pregnancy was at 26 + 6 weeks, this was my first pregnancy.

My little girl is currently in high dependency in the neo natal unit, she is doing pretty well, has come off the ventilator and is on C-Pat, she weighed 750g (1lb 10oz) when she was born and is just so unbelievably tiny!!

I'm posting for so many reasons and if anyone could offer advice/suggestions or a friendly 'sort yourself out' then I would just hugely appreciate it.

Firstly, I feel dreadful, just shocked, scared, like I have somehow failed her by being unable to carry her to term and although I appreciate this is probably normal, I just don't know how I'm supposed to feel. I go to the hospital and I'm not sure what Im meant to 'do' and I just end up feeling awkward and out of place and then I'm worried if im not there I look like I don't care, which I obviously do. I just feel like I'm gong through everything on autopilot and it's just not sunk in.

Secondly, expressing - I m doing my very bestest to express every 3 - 4 hours, through the night and everything and I'm still only getting 10-15 ml on average. It feels like nothing, when will milk 'come in' any tips?? It's so hard with the machines.

There are I'm sure a million more things buti can't think of anything that seems important!!

Thank you

Jenny

[GotMyLittleLamb]

Hello,

Sorry I've not posted in ages, time is really flying by!! She is now 6 weeks old and would be at 33 weeks gestation.

It really is a roller coaster in the NNU, since I last posted, everything has changed again, and this time for the better :) her infection has completely cleared and she is tolerating 16ml feeds with her tummy and gut working perfectly (lots of poo now :o). She is off the CPap and has gone on to optiflow, she is managing perfectly on that and there is talk of weaning her into air.

She has no long line or canulars anymore and it's lovely to be able to see her hands and feet.

I had a fabulous mothers day, somehow Sophia managed to sneak out of the NNU and treat me to a kindle and a spa day, make two lovely cards and eggs benedict for breakfast in bed. [spoilt mum emoticon].

I am still frustrated with expressing, she is currently on 7ml of EBM and 9ml of formula per feed as I am just not making enough, they asked me to try breast feeding which I found to be an awkward, distressing experience as she is just so small and didn't seem interested at all. I am seriously thinking of giving up as she is fine on formula.

Hope everyone is OK.

[GotMyLittleLamb]

Managed to upload a couple of pictures if anyone is interested :)

[BadNails]

Hi LittleLamb, so fantastic to read your last post. I remember when Gen lost all of her cannulas, I hadn't realised how much I hated them until they were gone. And lots of poo, on optiflow... wow! Sophia is amazing :)

Don't worry about the breastfeeding. Even at 34-36 weeks, many of the mums, including myself were concerned that their babies just weren't interested. The difference I experienced with Gen some four or five weeks later was phenomenal. That extra strength and weight really did change everything. If you are determined to bf, just keep going, you will get there. But I understand the oddness (is that even a word??) and the sadness of trying to feed a baby that weighs less than 4lbs.

And have you tried fenugreek? And am not normally a subscriber to supplements or herbal medicine but I'm taking it at the moment to see if it helps with Gen's weight gain and it does appear to have increased my milk production. I know it's not supposed to work for everyone but hey, you never know!

Sophia's just gorgeous btw :)

[GotMyLittleLamb]

Hiya, she is just beautiful isn't she :)

Well, since your post. Is all gone wrong again. She has another infection, they are talking about NEC :( she s really poorly, back on CPap, back to nil by mouth, back on antibiotics with canulars in.

All this talk of roller coasters doesnt really make sense til your on a down.

With the breastfeeding, I have stopped expressing. I tried breastfeeding and felt awkward and uncomfortable which wasn't helped by the breastfeeding nurse. I tried some tablets suggested by the neonatal nurses which made no difference to my supply and Sophia was having 5ml EBM with 12ml of formula, I felt that it was not worth all the stress and sleepless nights so made the decision to stop. I feel loads better for stopping, although I will now never forgive myself if she has NEC, but I simply wasn't making enough for her to exclusively have breast milk.

This week is a bad week, but we will get through it (this has become my mantra)

[GotMyLittleLamb]

Yes, the nurses have said similar to me, I do feel so much better about it all and have energy again!! Yay!!

It looks like we are off to Alder Hay tomorrow for some bowel investigations and potential surgery (depending what they find) I am beginning to think this journey will never end, the consultant said to me that " he sees a baby like this maybe once every one or two years where he has no idea what's wrong with them "

She is 9 weeks old and is finally 3lb!! She has spent so much time nil by mouth, to a wonder she is growing at all!!

[BadNails]

So much of what you have written sounds uncannily similar to what was said about Gen! By the end of our hospital stay, I concluded that none of the doctors really knew anything about anything as I didn't need to study for seven years to say that the problem was her prematurity

In spite of being far from home, we loved it at Brighton (surgical unit) as we felt incredibly assured by the professionalism of the surgeons. They weren't going to cut her open unless they absolutely had to. And they waited to see if she would sort herself out. We weren't hurried and nor were they. I've no doubt that you'll find the same at AH.

Good for you for stopping expressing, it's not healthy to force something on your body. I saw far too many mothers tying themselves up in knots over milk production. NEC can appear in breastfed (and term!) babies too, unfortunately it doesn't always discriminate.

I wish you lots of luck for your transfer. Onwards and upwards Sophia!

[Poppet45]

Lamb I'm so sorry I've been offline for a while, can you believe Willow is doing something as mundane as teething? Sophia will get there too. And between that and potty training her big brother Mumsnet had to give! I've just looked at your pictures and am just spellbound by Sophia - she is so beautiful - her eyes are so deep and gentle looking. Amazing wee girl. Sob.
Am sorry to hear she's had another go on the sodding rollercoaster while i've been away, I hope they work out what's wrong at Alder Hay, and I hope it doesn't involve surgery.
As for the expressing, it's simple. If it wasn't working for both of you, it wasn't working. Don't harbour any regrets, you shouldn't have any. You've done amazingly well given the feeding issues poor S has had to cope with. Onwards and upwards girl.
Wishing you all the best

[efeslight]

hello littlelamb,

i hope you are in a happier place now and have some answers/solutions to her difficulties, i loved your photos, especially the top one with the big eyes and the little hat... made me cry.

i have been busy since my last post, my daughter was born at 37 weeks, 4lb 11oz/2100grams, so a monster baby compared to her older brother, quite healthy and at home, just quite small for her age, the same problem as first pregnancy but to a lesser extent.

wishing you the very best of luck x

[GotMyLittleLamb]

Hello everyone,

Well, we didn't make it to Liverpool last week, we gave her one more try on milk and she was tolerating until yesterday, we made it up to 11ml and then yesterday her tummy swelled and she was in obvious discomfort. She's back to nil by mouth and we are now scheduled to go on Monday/Tuesday depending on transport and beds.

They also sat me down and explained there is no chance she will be home by her due date (10th May) as I had mentioned it a few times. I think I was clinging to this even though I knew it was getting more and more unlikely. I am devastated, I had this date in my head when everything was going to be over and it's not happening. I feel like I am being robbed of the chance to be a mother, I am spending my maternity leave in the hospital and am going to end up back at work as soon as she's out, or so it feels. It has made me really emotional and I have spent a couple of days in floods of tears. I have met some lovely mums at hospital and have talking to them has helped, but now I'm off to Liverpool so back to feeling alone.

poppet I can't believe Willow is teething!! It must be exhausting but amazing to be at that stage. She is utterly beautiful, I am utterly besotted with her when I see her, I also adore watching DH with her. Your so right about her eyes.

Congratulations efes and thank you for looking at my photos, no answers yet but we will get there, soon, I hope.

BadNails thank you, that's exactly how I feel, the things they are saying just don't make any sense to me. Everything they are testing DOES work, we know she can tolerate milk, we know she can process it and we know she can poo, she's just struggling to do it all at once, it something that I'm sure will come but she just needs to get bigger. I can't believe for a second that they are going to find a 'proper' problem. The surgeon said the same thing, he said "he's ot gang to find anything but they have to check".

Also, thank you, I'm glad I'm not getting a flaming for giving up expressing, it was just too much.

[GotMyLittleLamb]

So, I am now sat in Alder Hay, they have let me stay in the Ronald McDonald house so I am close to her. We came to Liverpool on Monday and today she had the necessary investigations. Sophia is tolerating things brilliantly, she is pretty oblivious I think. I am lonely, bored and fed up. I just want this whole sodding experience to be over .

The initial results show there is no blockage but she has also had a biopsy which will take 48 hours at least to come back.

Anyone around?? Kind words would be lovely right now, DH is feeling dreadful that he can't be here, his work are being particularly unsupportive although they have been great the last few times we were told we were being transferred so I guess it had to happen sometime.

I'm so tired, I hate sleeping without DH and it's exhausting being passed around (we didn't come straight to Alder Hay, had 2 days in Liverpool Woman's hospital).

[KD0706]

Oh lamb I'm so sorry to read you're in such a bad place - emotionally I mean, not criticising alder hay!
My typing may be dodgy as I'm juggling toddler and baby.

I don't know if it will make you feel better, but Sophia won't know what's happening and will forget it all so quickly. When dd1 was in nnu I was so upset at all the things she had to go through but now at age two she is completely unaffected by it all.

I know what you mean about thinking you'll spend all your maternity leave in hospital but honestly you will look back on this and it will seem to have passed in such a whirl. You will have lots of quality time with your beautiful baby and you will really enjoy her because I'd what you have both been through.

You're doing so well and being so string for Sophia.

Sorry I'm being dragged off by toddler but big hugs you are doing really well and it won't be forever.

[GotMyLittleLamb]

Hi KD I do know she won't remember, to be honest she is pretty oblivious now. It's just me that's struggling.

Another tough day today. They still have no idea what's wrong with her, one of the tests was clear, she is having another test tomorrow and we are waiting on the results of another. It's exhausting and we are still no closer. I almost wish they found something so it could be fixed and we can go home.

DH came to see me last night, he brought a picnic of my favourite foods and flowers and he printed me one of our wedding pics to put in the room, he is such a lovely man. Alder Hay is obviously the best place for her, it's just so unfamiliar and scary and lonely.

I was doing quite well with putting on a brave face but I seem to have lost all ability now. I just want to sit down an cry but when I do, I don't feel any better, just more exhausted. I think I may have reached my limit,

I'm just rambling now, I don't know what else to do bugs write it down.

[BadNails]

Hi Lamb, forgot to write that I pm'd you yesterday. I'm sorry that it's hard at the moment. Remember that you've got through tough times before, and you will again.

How lovely is your DH?? I hope it helped a bit.

You're doing great, you really are x

[Poppet45]

Oh Lamb, I hear you on the running out of a 'brave face' to put on - towards the end of Willow's stay I could literally feel me and DH flagging, it's so utterly relentless and exhausting and just so out of your comfort zone - for hours, and days, and weeks and months. And because others haven't been through it they don't have a clue about the cost it exacts. I felt just like that when Willow was readmitted in December to the the children's ward for an acute zinc deficiency - which like your situation wasn't helped by the fact that noone had a fecking clue what was up, despite a rash that had all the skin on her face and her bum peeling off leaving her looking like a burns victim. That was a very dark, lonely and unrelenting time. PM me if you like and I'd be happy to have a chat if you're there for much longer. My sister used to ring me up of an evening in the hospital and it helped. In the meantime I'll wish for them to quickly find something they can fix, simply and easily so you can get your wee girl home where she belongs and start living your life as a family, and moan about normal things like explosive poos and teething and sleep deprivation. Hugs to you all.

[KD0706]

I completely get what you mean about almost wishing they'd find something so it could be dealt with.

I know it's a different scenario but I was kind of like that when I was pregnant with DD2. I was really keen to carry to term, but from 26 weeks I kept getting intermittent contractions and funny discharge and I half wished I would just go into labour so that I knew what was happening rather than playing the waiting game, being on the roller coaster of thinking everything was fine then having another scare.

I'm pleased your DH is being so fab and also that you are getting such fabulous support from badnails and poppet.

[KD0706]

Also, don't worry if you can't keep your brave face on. Perhaps having a bit of a cry and releasing the tension will help you.
I doubt anybody expects you to be so strong except yourself.

[GotMyLittleLamb]

Hello again, am on my phone so can't see everyone's messages to reply individually. Thank you so much for replying though.

Today's test showed nothing again, the conclusion appears to be, she is premature. Can believe we have come all this way for that. But the consultant has decided to keep her here for the weekend and then review on Monday. He has restarted her feeds and wants to send her back on increased feeds with no problems. I guess the idea being if she continues not tolerating, she will end up back here so they may as well make sure she is right.

I had a good ol' cry last night, and this morning, and then had a bit of a row with DH, he has a hobby which he goes to each Friday from 5-8. He is coming up after that and I got in a right strop saying he should miss it. He does next to nothing else and was so lovely on Weds, I know I am being utterly unreasonable. he is spending the weekend with me and Sophia so I think I'll feel better once he is here.

Not sure if I already posted this but I have defo decided to take a little time off sick after my mat leave. Its totally out of character for me but even if I end up going back as planned just the knowledge that i could take more time off with Sophia is making the idea of missing my mat leave much more bearable, that sounds particularly weird doesn't it....

Still not really spoken to anyone around the hospital. Maybe I am giving off some kind of unsociable air...I have had loads d texts from mums at our original hospital asking after Sophia and me, so that's nice and they have some idea what I am going through.

[KD0706]

I think there are just different dynamics depending what other mums are in. When I was in hospital with dd1 I didn't really chat or click much with the other mums. But with dd2 there was a different bunch who I just somehow got in better with and really bonded with some of them.

Of course you and DH are having some cross words. It would be strange if you didn't. I do understand you wishing he wouldn't do his hobby. You are devoting 24/7 to Sophia with no time out for hobbies etc. So even if you don't consciously resent DH having time out, there probably is an element of that.

I hope Sophia tolerates her feeds well and you all have a good weekend.

[BadNails]

I agree with KD - hospital 1, great bunch, made some genuine friends. Hospital 2, didn't click with anyone at all. Hospital 3, I convinced myself we weren't going to be there for long so didn't make the effort. I also felt pretty despondent by that point. We were the parents whose baby was going to die for the first few days too, so that didn't help.

I don't mean to be flippant, but you're probably not wrong about giving off an 'air'. Don't let it worry you. As you say, you're getting support from the mum's at your original hospital and that's grand.

As for the row... I can't tell you how many spats me and DP had and they weren't pretty. From conversations I've had with fellow NICU mums, it's the same all round.

I understand the need to take more time off. I decided to take off an extra three months. It's crippled us financially, but I wanted a 'normal' maternity leave, one which didn't involve me sitting next to an incubator.

I will keep everything crossed that Sophia tolerates her feeds. Take care x

[GotMyLittleLamb]

Hello, god it's been ages since I wrote, time seems to all be merging into one day. Since I last wrote everything has changed!! We have been moved back to our local hospital. Sophia is on full feeds, taking them all by bottle :) there is now talk of her coming home. Absolutely terrified!!

Nothing actually happened at Alder Hay, they changed her milk so she is lactose free and we have been doing daily rectal washouts (when I say we, I mean me the nurses at my local hospital won't do it). Something has made a difference and she is a much improved child :)

I think you were right about different hospitals/different dynamics and I guess I wont panic about it.

So now I am up at 4am panicking that she is coming home, they have said in the next 2 weeks...she is likely to come home on oxygen but apparently they don't sent you home with a stats monitor or a nurse or anything!! I have never been alone with her or known her not to beep. I am utterly scared and very worried!!

[slalomsuki]

Little lamb, sorry to hear all thus and yet pleased that you are able to get through it.

11 years ago today I started on a similar journey to the one you have been going through when my DS1 was born. It was relentless and the shipping between hospitals each with different policies and care regimes only added to the stress.
In our area they have a SCBU nurse who visits you daily when you are eventually discharged. They won't do it before you are ready and will let you have your daughter overnight for a couple of nights in the hospital before they are confident you can cope. Don't worry I know the idea and the reality is daunting. I clearly remember bringing him home and then panicking as to not knowing how to change a nappy.

For me I took the decision to enjoy him and while it was a struggle at the time it didn't put me off having any more. Indeed I went through it all again 18 months later with DC2 but I was wise to the SCBU targets by then and played the system more.

He is 11 today and all this seems like a distant dream. He is tall, strapping lad who gives me all the back chat that I don't want and sometimes I long for the tiny baby phase.

[GotMyLittleLamb]

Well I'm glad its not just me, there is a chance she will be weaned off oxygen but they have said we should prepare ourselves for her coming home on it. Today we are sorting the house so it is ready when they said she is...I can't believe I am writing that, I am so excited!