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

(124 Posts)

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

clabsyqueen Mon 27-Feb-12 22:11:13

I know what you mean about it seeming wrong to keep putting milk in them when they shouldn't even be here yet but it's so important that their little tummies get working so they can get off the long line ( not sure if your little one has one) and start growing independently. It's all about moving them closer to home. I did have lots of battles about the rate at which they increased her feeds. They told me that Mums in particular seem to want to make sure that things go very slowly in this department. We just don't want to upset/challenge their tummies too much because it can be so upsetting when they have setbacks. It's a protective thing but the docs have done this so many times they just follow the drill. If you have a concern that they are increasing feeds too quickly you can say so. I found it helped my caseif I could describe the negative impact I thought it was having on her (fast breathing or heartbeats for example). In our last week in hospital they were really keen to move her onto 3 hourly feeds then 4 hourly feeds. I flatly refused to allow 4 hourly feeds and only allowed 3 hourly feeds when I was present so that I could monitor how well she coped. Even now she feeds every 2 hours or so. I really feel that is what she liked/needed. After a while I got used to asking them to explain why I shouldn't be worried about x y or z. Reassure me!!! I would say to them. They usually could as they have done it all thousands of times.

clabsyqueen Mon 27-Feb-12 22:12:48

I know what you mean about it seeming wrong to keep putting milk in them when they shouldn't even be here yet but it's so important that their little tummies get working so they can get off the long line ( not sure if your little one has one) and start growing independently. It's all about moving them closer to home. I did have lots of battles about the rate at which they increased her feeds. They told me that Mums in particular seem to want to make sure that things go very slowly in this department. We just don't want to upset/challenge their tummies too much because it can be so upsetting when they have setbacks. It's a protective thing but the docs have done this so many times they just follow the drill. If you have a concern that they are increasing feeds too quickly you can say so. I found it helped my caseif I could describe the negative impact I thought it was having on her (fast breathing or heartbeats for example). In our last week in hospital they were really keen to move her onto 3 hourly feeds then 4 hourly feeds. I flatly refused to allow 4 hourly feeds and only allowed 3 hourly feeds when I was present so that I could monitor how well she coped. Even now she feeds every 2 hours or so. I really feel that is what she liked/needed. After a while I got used to asking them to explain why I shouldn't be worried about x y or z. Reassure me!!! I would say to them. They usually could as they have done it all thousands of times.

clabsyqueen Mon 27-Feb-12 22:18:22

Oopps. Sorry about double post. One last thing -I got a bit of advice from a departing mum and that was to get to know the nurse in charge of the nursery. This person will often be on the one who decides how to implement the docs decisions like when and how to increase feeds. You can often negotiate with them for a little reprieve if you want your little one to stay on the same volume for a while. But in the end more milk is closer to home so be brave - these little ones can cope with more than you think. Best of luck with getting some sleep.

beckyboo232 Tue 28-Feb-12 08:27:56

Great news about the poos! smile I remember about the feeding too but as the others have said its important to get their systems up and running so they can begin to grow independently and run their own systems. But having said that question, question, question if you think the doctors are wrong. One neo nurse gave me the best piece of advice that no one knew my baby better than I did so I had to trust my instincts and fight. One day with the feeding he just turned a corner started keeping milk down every 2 hours through the tube and that was the big turning point after that he gained strength in his case they could operate etc. glad the expressing is improving after the first 4 weeks I found it much easier once we were in a routine.

JoEW Tue 28-Feb-12 10:02:39

Hello GotMyLittleLamb, i hope you are doing well and getting to grips with everything. About this time last year I developed pre-eclampsia and five days later had an emergency c-section, I was luckily at 32 weeks. My LO spent 5.5 weeks in neonatal before coming home weighing 5lbs. I have so much sympathy for what you are going through at the moment but it sounds as though DD is doing really well.

I felt EXACTLY the same about the guilt and people would say, "he came along early" and I would think: "no, I forced him too". It's a completely natural way to feel and respond to the trauma that you have just dealt with. I found spending as much time as I could with DS really helped. I am sorry, I haven't had time to read through this whole thread so apologies if I repeat but I did lots of kangaroo care, which was lovely and really helped me bond.

Re expressing, I got myself a Medela pump, which was as good as the hopital ones. basically, the more you pump the more you will get. it's an utter ball ache and I hated every last minute of it! Pumping at least once a night is pretty essential to keep the supply going. Don't kill yourself over it just do your best.

The neonatal ward is really daunting at first but you will get used to it. Talk to the nurses, ask questions but remember that this is YOUR baby and you are entitled to be there as much as you want. It's a very strange feeling but everyone goes through it, wondering if you are 'allowed' to look after and be with your baby.

If you can try to strike up a conversation with other mums, in the expressing room is good. I met four wonderful women during our stay and am still in touch with them all, it was such support as people who have full term babies really can't understand much of the challenges you face.

Please DM me if you want any advice. I wil try to help.

A year on and we have a chubby, noisy, funny and very very wonderful little boy. You will get there.

Poppet45 Tue 28-Feb-12 14:22:14

Yey for poo!!!! grin Well that's a posting first for me on mumsnet. The med that can help up your milk volume is domperidone, which is sold over the counter as motilium. Its an anti sickness drug normally, and as DD is on it right now for her upchucking, its safe for babies! Sending you and DD all the best!

KD0706 Tue 28-Feb-12 21:29:16

Hi GotMyLittleLamb
How are things going?

I've got my DD2 on nnu at the moment, she was born at 32 weeks and is now one week old. DD1 was also prem, born at 31 weeks. She is now 22 months and doing really well, you wouldn't know she was early. She is a bit on the small side, but is 25th percentile for her actual age, and I'm short and petite so she just takes after me.

Please try not to feel awkward when you spend time at the hospital. the nurses won't mind having you there at all. All mums are different, depending on their character and circumstances. Some sit by the cot/incubator for hours either reading or I've seen some knit. Others pop in to do feeds and cares and leave immediately.
With DD1 I was just sitting by her bedside all day because I was scared she would wake and I wouldn't be there. Now with DD2 I can't be there so much but I do make sure I spend time with her and I am probably at the hospital about 4-5 hours a day. The nurses don't mind and quite frankly if they did its tough.

Hope that ramble makes some sense. And I hope your DD is doing well.

Poppet45 Fri 02-Mar-12 21:45:38

Hiya lamb how's things?

Things are good, after all my panicking, she is now keeping down 2.5ml every 2 hours smile feels like huge progress, they want her to get to 12ml every 2 hours before they will consider taking the long line out. She's getting there smile

I'm coping a little better, managed to get a very painful infected hair follicle which has meant I have really struggled to get to hospital so haven't really had to face what I should be doing when I'm there. It has also meant that my expressing is really struggling, my body is focused on making me better so I'm still struggling, on 3 courses of antibiotics too so I am discarding the little milk I am procducing.

She would have been 30 weeks this week, it feels like a milestone.

smile

CelticPromise Sat 03-Mar-12 17:43:02

GotMyLamb congrats on the 30 week milestone. And great news that she is keeping down the milk.

It might be worth you calling one of the breastfeeding helplines about the antibiotics. There are many many antibiotics that are safe to take while BFing although not all doctors know this. Even if they are concerned about the effect on your daughter while she is so tiny perhaps you could freeze the milk for later on? I know how depressing it is to chuck out the milk you have worked so hard for.

There is some info here

I hope you are feeling better soon, and your daughter keeps up the good work!

She weighs more than a kilogram!!!!!!! Eeeeeep!!! I am so pleased, it feels super!! She is now 2lb 4oz or 1,020g grin

Mandy21 Mon 05-Mar-12 22:53:15

Yeahh!! Over a kilo and over 30 weeks. Double celebration. It sounds bizarre to anyone who hasn't had an early prem, but that 30week milestone is a BIG one! Really pleased for you. Please keep us updated :-)

Urgh, had a rubbish couple of days, she has suspected meningitis and they are also testing for cystic fibrosis, so some rather scary words there. They have tried to do a lumbar puncture but she wouldnt tolerate it (kept desating and wimpering) but they are treating her as though she has menigitis. She has gone back to nil by mouth and seems poorly, wheras previously she had only been ill according to tests and numbers she now looks pale and ill. Shes also gone back onto biphasic rather than CPap as she was in a bad way.

It's really hard, it's all been bad news this week, I know they prepare you for this but it's truly crap to hear such scary words being banded around about your little girl. DH is massively struggling, he is now on antidepressants and is seeing a counsellor, I am glad he is getting help but am hugely suprised I seem to be handling this better than him.

Am doing better with the staying in the unit stuff, have spent at least a few hours there every day and have spoken to lots of the nurses and other mums, have started to talk about stuff unrelated to our DC which makes the days pass quicker.

Expressing is still a nightmare but turns out I have had worse infections than originally thought so am hoping once my body has sorted itself out it might get better at making the milk.

Thanks for all the lovely support, it's so good to be able to come and get it all out on here thanks

efeslight Wed 07-Mar-12 20:48:45

hello lamb,

what a difficult time for you all, i hope she gets better soon, our little boy also had fluid taken from his spine to check for infection, luckily it came back negative, but sometimes its just one thing after another, thinking of you, try to keep positive for yourself and your husband, and keep posting, xx

Poppet45 Thu 08-Mar-12 13:50:16

Oh hunny I wish I could pop the kettle on and offer you some medicinal cake, what a tough week. Willow had a lumbar puncture too, hideous, but it wasnt totally successful, came back as a bloody tap <shudders>, however they put her on broad spectrum abs and she recovered from whatever it was before they had another go. Its so disheartening when they take backwards steps - willow did this such a lot with the cpap. These delicate wee babies of ours get sick so quickly but equally when they turn a corner the speed with which they recover is astounding. Sending you and DD our best. I hope those test results come back okay too what a lot weighing on your shoulders, esp with poor DP feeling overwhelmed, do you have much support locally?

crazymum53 Fri 09-Mar-12 09:40:29

Hello there. Having a child on NICU really is like being on a giant rollercoaster and I hope that things start going back up again for you soon.
Am afraid that the doctors do tend to give the worst-case scenario first and found that sometimes you need to ask for the best-case scenario! best wishes and brew

cowboylover Fri 09-Mar-12 18:27:22

Thinking of you Lamb.

My DD was not premie but was in neonatal and it's so scary.

Keep talking and I am part of a great group on Facebook called Special Care Babies. Family Support Group. And found the support really helpful as well as you have here.

KD0706 Sun 11-Mar-12 14:26:46

Hi lamb
Just wanted to say I'm thinking of you and hope your DD is on the up now. I agree nnu is such a roller coaster. I hope you have had better news since your last post.

Poppet45 Mon 12-Mar-12 17:55:30

Thinking of you here too Lamb, hope things are looking brighter.

Thank you for all your kind thoughts. Things are looking up a bit now after a not so great week.

They managed to do the lumbar puncture and we are waiting on the results, also waiting for results from about 4 other tests. Since I last posted they have changed her antibiotics again and have taken her long line out to give her a break and a chance for antibiotics to work. And it looks like it has been successful, her CRP markers have reduced and clinically she looks a lot better, they have restarted her feeds, she's on 3ml 2hourly and is back on CPap.

I really though everyone talking about roller coasters wouldn't apply to me and my little girl would just be great all along and be ready for home in no time, but it's so true, NNU is exactly like a roller coaster.

DH and I are doing well, this has brought us so much closer but it is so hard.

Allthewhitehorsesarestillinbed Tue 13-Mar-12 09:26:36

Hello GotMyLittleLamb

I've been lurking on your thread, but haven't posted as it was all a little close to home. Like yourself, I posted on MN a lot to keep sane and feel less alone. I namechanged (formally BadNails) partly to move on!

My daughter was born at 25+4 weighing 686g (1lb 8), following pprom at 22+6, so initial circumstances completely different to yourself, but following that a lot of what you have experienced sounds very familiar.

You've been given so much good advice here so I'll try to not repeat. What I can say is that throughout our 120 days stomach/gut/intestinal problems plagued us. Even our discharge notes have ?NEC written all over them. Our girl, slowly but surely and at a pace dictated by no one but herself grin overcame, overcame, overcame. I hope to not diminish the battle she fought, but it was hard. I started planning her funeral twice.

I kept a journal, took so many photos, even during the tough times and it's only now I'm starting to realise what a horrible, incredible journey it was. Roller coaster doesn't quite cut it, does it?? But you will get through. Sounds like all of you are doing brilliantly.

Before I ramble too much, I'll just say this. About six weeks ago Gen was on about 1ml every two hours and I was in a pit of despair. Today she is fully breastfed, no top ups or formula. She weighs 7lbs, four weeks corrected, so still tiny but she gained 10ozs last week. We were told she needed time and I can't tell you how much I wanted to punch every person who said that but unfortunately it's true.

We've been home three weeks. It's wonderful and it'll be you and your girl before you know it. Keep strong.

Great news about her crp smile I'll keep you all in my thoughts and prayers x

Hello allthwhitehorses thank you so much for sharing your story, how incredible that you finally have her home. I can't explain how difficult it is at the moment, I was saying only yesterday to DH that I can cope with the little bits, getting to hospital, doing her cares, making tea etc. But the second I stop, and think about the 'big picture' I fall to pieces. A roller coaster doesn't cut it but I don't know what will.

They are pretty certain it's not NEC, that's why they are testing for cystic fibrosis but they just seem to not know. I am hoping it's just that her gut is underdeveloped, she was tolerating 7.5ml a week ago, but then all this infection stuff started.

MN has really been my saviour through this.

Allthewhitehorsesarestillinbed Tue 13-Mar-12 10:35:54

Don't think about the big picture! Just know that it will pass, have that in the back of your mind and start each day anew. That's what got me through. If I'd known it would've taken four months, I couldn't have done it with my sanity intact!

Underdeveloped gut is what they eventually settled on with Gen, about, oh, four days before she came home wink It's hard when the doctors don't seem to know, I completely understand. You will be amazed by the small victories, just look at your journal in a week or two. She will surpass that original 7.5mls faster than you thought possible.

Poppet45 Tue 13-Mar-12 14:06:43

So good to hear from you Lamb, and what an amazing litle girl you have Littlewhitehorses, wow!
I think LWH's horrible, incredible rollarcoaster is a brilliant description. Because there are incredible bits, eventually, but it really can be so horrid too. Just get to the end of a day, take a deep breath and do it again, and we're here for cake and hand holding.

Allthewhitehorsesarestillinbed Wed 21-Mar-12 12:33:20

Hi LittleLamb, hope you are all okay. Still keeping you in my thoughts x

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