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

God that was an awful post, thank you to anyone to makes it to the end.

Hello littlelamb,

well done for making it onto mumsnet, i wasn't using it when i was in this same situation, and i think it would have helped alot. My little boy was born around the same time/same weight, so i remember how difficult it was. 'tips' for you to consider...

talk to the staff, ask them to repeat their explanations of whats going on, procedures etc, so you can take it all in slowly. write notes if you need to, take photos to look at at home. ask how you can help, have you changed a nappy? do you get chance to 'kangaroo'/hold your baby against your skin?
this was extrememly important for us

talk to the other mums, how are they feeling? what have they been through? i think this would have helped me alot (my little boy was born in germany and my german was not good, so i found this quite hard)

are you the kind of person who can read to make sense of things? i bought 'the premature baby book' and 'your premature baby and child' and both these books were useful, they also addressed potential guilt/feelings of being helpless, i think you're probably still in shock to a certain extent...i struggled with these kinds of feelings for months, even though i knew i hadn't done anything wrong...

have you talked to your partner and explained how you are feeling? or a good friend/nurse? mum? or just keep posting on here if it feels easier...

remember your baby is in the right place, with all the right support and sound s like she is doing well.

The expressing was a nightmare for me, exactly the same, trying as hard as i could, not sleeping, and spending many hours expressing for 10/15 mls. i kept it up as long as i could, tried some medication(cant remember what at the moment) and fenugreek but nothing seemed to help much, some drs told me the breast tissue just hadn't had time to develop all the milk ducts etc necessary.

please look after yourself, sleep, and eat as well as you can, i think your feelings are entirely normal, to be expected after such experiences... hope some of this helps...xxx

Hi efeslight

To answer some of your questions, I have held her and changed her nappies, although that makes me feel a little weird as I don't want to knock any wires or anything.

I have tried talking to other mums in the neo natal unit but they are not exactly 'chatty', well one is but I hardly see her. I think they are struggling and dealing with it quite differently. This is part of the reason I posted, I don't actually have any friends with babies, least of all anyone who has been through this sort thing.

I am absolutely the sort of person who can read to make sense of things although I have found all the baby books I have read to date a bit 'fluffy' and not really on my wavelength, thank you for the suggestions, I will definitely be checking them out.

I have talked to my DH, he is struggling too and is having problems at work as well. He is incredibly supportive and wonderful but doesn't know what to do or help, he feels the same as me that we are just running on autopilot in shock.

Thank you, it is so ok to know I'm not alone with the expressing, its really bringing me down.

If you don't mind me asking, how is your DS? how long was he in hospital for?

Thank you again, posting on here really helps, even just because writing it down makes it a bit more 'real' iykwim, I can't believe I have a daughter!!

Expressing is a nightmare when you've had a baby at full term and all your hormones are working at full speed....please don't beat yourself up if you can't manage it with a premature baby. Do what you can, but remember, it's also important that you are rested and well to take care of your child. I have multiple friends who had babies as early and earlier than yours and they all have healthy happy thriving children now. Modern medicine is amazing.

And being in shock after you have a baby is pretty normal at whatever stage you have that child. You are a normal anxious mother.....doing exactly what you should do....worrying and caring for your child.

Hi SofiaAmes thank you for your reply, that's really reassuring, the nurses are being really positive but it's so difficult to see her with all the wires and beeping and think that one day ill be able to take her home!!

The expressing is a nightmare isn't it? I always imagined I would be producing pints of milk or something, I guess I was really unprepared!!

Thank you, good to read im not mad, just a mum :) x

Heres a hand to hold and a shoulder to cry on my lovely. I'm typing this one handed with DD snoozing on my shoulder. Shes now 6 months old but was 27 + 3 when I had her by emcs after going into spontaneous labour for reasons unknown in august. It is such a tough time, the numbness, shock and guilt you describe can be overwhelming, but bizarrely you'll adapt to the unit and eventually it'll feel like a home from home. I remember feeling like a spare part too and being terrified to change her nappy because she was just covered in wires and so small compared to her 9lb 6oz big brother. Right now chat as much as you can to the nurses if the other mums are too shell shocked, it makes sense too because as you have a littlie like we did, (Willow was 1lb 15oz at her smallest) you'll see lots of other mums and babies pass through but the nurses are in for the long haul! We were in for 9 weeks in all. Also take lots of pics now even if she looks so tiny and medicalised and try to get a sense of the scale. One day when shes sleeping peacefully on your shoulder, breathing unaided and contentedly breaking wind like a burly scrumhalf you wont be able to get your head around just how small she was.
As for expressing, Willow is now fully BF so although its a slog it can be done. Here are my tips drink loads of lemon barley water (really!) because the barley boosts prolactin, try to express more than 3-4 hours, think ideally 2-3 hourly during the day and (sorry) at least twice overnight as its the nighttime ones that boost your supply most, you can also mimic clusterfeeding and express little and often during an evening when youre watching tv which also really helps. And finally have you tried hand expressing again? I got to the stage where even the biggest machines were getting almost nothing out but by hand expressing i went from taking 30 mins to get 0.1mls of colostrum to making 1.2 litres a day by the time DD was coming home (far far more than she needed in the end and it went to a milk bank) I'd express on one side for a minute or two, at a time, until it ran out then I'd swap to the other side, and repeat, then swap back again. Dont forget to massage your boobs before you express too as that certainly helps. Ask the wards bfing counsellor for advice. You have lots and lots of time to get your supply up and running before she'll be ready to feed so stay positive! Its a matter of keeping calm, aiming for small improvements each day and just plugging away.
And finally kangaroo care is your friend, it does wonders for baby, for your own mood and if you decide to keep aiming for BFing also for your milk supply. Wishing you all, all the luck in the world, we're rooting for you.

Hello again,

my little boy was born at 1lb 11oz, and was in hospital for about 3 months, up until about his due date, he went home at about 5 lbs, and is now 2 1/2 years, weighing about 11 kilos, cant remember in pounds. Doing really well, still a little behind in physical development, but speech, intelligence all good.

we had many follow up appts once he was out of hospital, and we went to physio appts for about 18 months, due to a brain hemorrhage which had affected the area of his brain that controls gross physical movement. as soon as he could crawl 'properly' on hands and knees, we were discharged from physio.

keep doing what you're doing, changing nappies/holding your daughter etc will get easier and you will feel more involved, i started to keep a diary of events daily/weekly, which later i added photos to, mostly because i have a terrible memory and found it hard to keep track of things and i knew i would forget the details later on... I'm really pleased i did this, looking back at it now is still upsetting, but shows how far we have come.

keep posting x

Yes, the hand expressing is a good suggestion. Also, try warming the cup with warm water before putting it over your breast. And try warm compresses on your breasts before/during expressing. Make sure you drink plenty of water while expressing and find something interesting to do (watch tv, read, etc.) while expressing so you are not focusing on how painful and boring it is. The milk will flow better when you are not anxious. It will also flow much better over time....they say it takes 4-6 weeks before you are flowing fully and nicely, I think.

Hello Poppet45 thank you for the hand and shoulder. How lovely to hear about your DD, it seems so unfeasable that she will ever be 'normal sized' or will fit into 0-3month clothes. We have been taking loads of photos though.

Right, have sent DH for lemon barley water and will do my very bestest to up the number of times I express, I have been doing it at least twice overnight. My DH has set alarms all over the place for various medication and expressing and helps me out in the night. I have never tried hand expressing, I was under the impression it must only take place with big scary machines, any good websites I could look at for instructions??

SofiaAmes thanks for the tips, I will try all of those, this is really what I needed, thank you both!!

She is already feeding, only 1ml every 2hrs but it's motivation to persevere :)

Efeslight thank you for sharing your story, I started a diary soon after she was born, I blog a lot and I think my immediate reaction to most things is to write them down to make sense of them.

I had a second cuddle today, she is just so tiny. I am so exhausted though, had a fight with DH, I think I'm underestimating how much this must have affected him, Im so wrapped up with my feelings and thoughts and pain. I think I seem so 'fine' on the face of it that when I break down it comes as a huge surprise to him. I also can't believe how time is disappearing, we don't seem to have any time at all. There is so much I want to do and I think I'm pushing myself to far.

Hello from your AN thread, glad you're getting some support from people who understand what you're going through far better than I do.

But with my peer supporter hat on....
Oats are your friend for milk production - flapjack and porridge :)

Hand expressing is easy but I didn't have the patience for doing it too much - much easier to turn the machine on and turn the volume up a bit on the TV basically you cup/support your breast with one hand and use the other to stroke firmly down towards the nipple, moving your way around the breast so all the milk ducts are emptied - leaving some full can cause blocked ducts and they aren't fun! Hot flannels can help, looking at pics of your DD or having her tiny clothes can also help to stimulate your let down. You can probably get more info from either the NCT, la leche league or breastfeeding network - some or all of whom may have BF counsellors in your area - its a lot easier to talk about/demonstrate than to type

And regardless of how early your DD was born, you have had major surgery, because you were ill and are still recovering so need to look after yourself. Not just drink plenty and eat well for milk production, but rest, and talk and share what you're going through with anyone and everyone if thats how you work things through. Obviously getting her nursery ready makes you feel you're doing something for her, but you still have a few weeks before she's home by the sound of it, despite doing so well so young :) so don't push yourself

Hello yorky ok, porridge I can do. I have an appointment on Monday with breast feeding nurses, I will ask about hand expressing. I'm happy to have a go at anything. Would you recommend joining the local NCT? I don't really know much about them other than the nearly new sales, yet another thing I thought I had time to find out about.

I think need people to tell me to stop and look after myself, thanks :) DH keeps trying. I am terrible for pushing myself though :( part if it is going to the hospital everyday, its an hour round trip if theres no traffic, which isn't bad but by the time we have spent a few hours there and then done errands most of the day seems to disappear, I'm going to be forced to chill next week when DH is back at work as I won't be driving and I can't walk far without pain.

I gave birth to my son at 34 weeks in 2006. Although he wasn't as early as your daughter he had some trouble breathing, feeding and various other problems. Reading your post really took me back to what it felt like when he was in hospital. He was born in a large inner city hospital and it seemed like many of the babies in there were there due to substance abuse problems. Social services had a very large presence. I discharged myself from hospital the day I gave birth as things were manic due to understaffing and had to leave my poor little ds behind which was horrible. He was kept in intensive and then special care for a further 3 weeks. I expressed every few hours, by hand at first and then the hospital lent me a super duper breast pump which got things going. For me, it was just the frequency of the expressing which increased my milk. You could also ask a midwife to prescribe you some domperidone which I was offered, but didn't need.

I also suffered the guilt that I had let him down, failed him and was a terrible mother.

He is now 5 and a half and absolutely fine. We sat down on Friday and looked through all his baby albums and I showed him the pictures of him covered in wires and tubes. He looked at them and said 'It's really odd Mummy, I won't ever remember anything about this will I?'. It brought it home to me that as far as he is concerned nothing out of the ordinary happened at all. It helped me forgive myself.

Hope that helps. Just wanted to say I have been where you are and it won't last forever.

Awww Sterny that made my cry, in my defence I am still bloody emotional!! I am so worried that she will only ever feel confortable in hospital or with loads of beeps or will hate me for abandoning her in hospital while I get my own bed. All ridiculous I realise, I need to get my head round the idea that she won't have any clue this happened.

There is nothing wrong with being emotional. It took me ages to get my head around what happened. My DH still can't really talk about it. I used to joke that poor old DS didn't know what hit him when he was discharged into the hands of a couple of imcompetents after having 24 intensive nursing care in hospital. It was fine though and you will be able to cope when the day comes. In a way, when you get to the stage where you have to do stuff for them yourself, it is much easier than standing on the sidelines while someone else does it.

If you google bliss premature baby charity, they have a great messageboard. I used it a lot when DS was small. Lots of good support there too.

I should have been more clear...when I said hand expressing, I actually meant a handheld expresser like this (note: american link, but you can find them everywhere) as you can control how hard and fast you are pumping which is essential in the beginning before you get "callouses." I never had any luck actually just using my hands!

We have a family friend who is a well-known pediatric doctor who specializes in premature babies and she said that it was almost universal that the parents of her patients felt guilty that they had caused the premature birth and that they were always extremely over cautious once the babies came home and she usually advised counseling to help with the guilt (we're into counseling here in america :) )

Hi again Lamb, how are you all today? I remember how the days fly - its just crazy, on the plus side you'll be the only one home with a 'newborn' who cant believe how much time they now have!
Were here for all kinds of support not just BFing advice as i certainly dont want to add to the pressure you're putting yourself under, but when i was talking about hand epressing i meant totally by hand - its v low tech but totally portable and silent! Get more advice from a professional but basically speaking you use your thumb and first finger (the one you point with) to form a c around your areola and squeeze them together to bring out the milk, vary how close or far from the nipple you are and just swap from one boob to the other. The battle is as much mental as physical, i started with almost nothing but every time i squeezed and got nothing i treated it as putting an order for more milk for the day after, and v slowly but surely it did work. And finally get some good vitamins in you as preemies are voracious for them!
As for the relationship front - thats bloody tough too. Try to be as kind to each other as you can, but as me and DH were pushed almost to breaking I know thats much easier said than done. Sending positive thoughts to you both and to DD.

Hi Poppet we are doing OK, saw DD yesterday and they had given her an hour completely off the CPap so she was breathing by herself. That feels like incredibly fast progress, trying not to get too excited as I know it's likely there will be a few steps backwards before she comes home.

I had a really honest conversation with DH about how I'm feeling, he was fantastic, I had got really upset because he kept making light of the physical side of the whole thing, for example travelling in the car was really painful, especially speedbumps and sharp braking but when I mentioned it he made flippant comments about how I was using it as an excuse to slag off his driving. Or when I asked him to do something he laughed it off saying I was using surgery as an excuse, I think he was trying to laugh about it so that I didn't get upset (doesn't make a lot of sense to me) he was really apologietic and talked about how upsetting it was for him, finally felt like we are being honest with each other. I also talked to him about the guilt, I hadnt even considered how helpless he feels. At least I can express and do something for her but I guess he can do nothing, Im glad we talked, we seem to understand each other slightly better. Plus he has added pressure that he is going back to work this week, im going to struggle to get to hospital and he is feeling terrible but there's not much we can do. Am calling in favours from everyone so I can get there, I'm sure we will sort it.

I will have a go at the hand expressing, without sounding daft, what do you collect the milk in? Is it a case of holding a bottle underneath and aiming well?

Sofia I have tried counselling before, i didnt really get along with it but I had a really bad time during pregnancy and am going for CBT soon which was set up before this all happened so hopefully that will provide some coping strategies.

Sterny yeah, I think that's one of my fears. Although if I can do her cares while she is covered I'm wires and this tiny then I'm sure I will be able to change her without the wires. I was saying to DH, it's going to be really weird being 'allowed' to pick her up or touch her without getting permission or her being handed to me in a particular way. I wonder if I will ever get used to that once she comes home.

Hi GotMyLittleLamb
Reading your posts has taken me back in time. DD1 was born, very quickly, at 30 weeks and had a huge brain haemorrhage along with all the other issues. Looking back it is hard to really remember how we got through it! She was in NICU and I discharged myself after 2 days.

Things that I wanted to add, whilst seconding so much of what others have already said:
DP went back to work 4 days after DD arrived - he took paternity leave once she came home. When he was at work, I basically moved in to the hospital! I had to leave sometimes - like shift changeover when they were discussing other babies in the same nursery - but otherwise I kind of took up residence and was never made to feel anything other than welcome! If you are able to get to the hospital then you should be able to stay there as long as you like. I used to express there - sometimes whilst holding DD once she was big enough for that. I would come and go from the NICU throughout the day, often I would just take a break, go to the cafe, walk around the grounds but I probably spent hours either just watching my baby or else reading a book whilst sitting next to her.

DP would go to visit her, quite briefly, each evening when he came home from work. This gave him a part of her cares and also took away some my guilt at kleaving her each day. It also meant I did not feel I had to be there in the evening as each day was just draining.

That said, when DD2 arrived early I discharged myself on the same day but had to leave her in NICU where I generally only managed to visit for 2/3 cares each day.

Looking back, I think it is important that you do what is right for you. Both times I was prescribed Domperidone but only managed to express/BF my girls until their due dates. I have, occasionally, felt guilty about this but really, it is the colostrum that REALLY makes a difference.

DD1 is now a healthy, normal 5.5 yo and DD2 is a whirlwind at 3.1yo. Other than issues with their vision they have no lasting health issues from being born early and have no memories of the time they spent in the hospital. We do, however, have a lovely time visiting NICU every Christmas Eve (which happens to be DD2's birthday) and sharing their progress with all the other NICU graduates and nurses - who seem to remember each one!

Yes - join the NCT as it will give you some RL support if you do not have firneds with babies. NCT people are generally happy to spend LOTS of time talking over baby-stuff which other RL friends may not be.

Yes - keep talking things over with DP/DH. Bringing your DD will be exciting but nerve-wracking. I remember when I was told we could bring DD home - she was unconscious from an MRI scan and still wired up to her machines (which were not coming home). I called DP at work: "They say we can bring her home tomorrow - do we want to?"

You will get through this trying time but must take care of yourself too.

Good Luck

Gotmylamb I echo what was said about taking care of yourself. You've been through a traumatic experience and will be in the best position to be there for your DD if you are well. Other than that the best thing is just for you to be there for her everyday. She's in the best place considering when she was born, and I'm so happy for you that she's doing as well as she is.
We were in a similar place last Feb. My waters started leaking then burst when I was 24-25 weeks along. I was in hospital over this time and fully expected to be doing what you are doing now. I went into labour around 26 weeks but unbeknownst to us I had contracted listeriosis. This was only detected after our DD's birth. The bacteria drastically cut her chances of survival, and sadly, she didn't make it. I've since had another beautiful DD but I'll always miss the DD that didn't make it, and wonder how she would have been.
My thoughts are with you and DD and hoping that before you know it you will all be home together.

Hi Dysgu thank you for sharing your story, I am not sure how I feel about being there all the time iykwim, the staff are absolutely lovely but I feel awkward, it's more my issue than anything else. The guilt I feel is more about the whole situation, I feel incredibly guilty that I was unable to carry her to term, and that I can't bring her home and probably that the whole thing makes me feel awkward.
Thanks, I will look for my local NCT and will join, my RL friends are being very supportive but they don't really understand and I think constant baby talk will start to grate on them, or I will be very conscious that I am quite boring.
I can understand you asking "do we want to?" it must be bizzarre having them home, I am excited but already terrified and I have so far to go before then.

Hi Consort I'm sorry to hear about your DD, thank you for your happy thoughts, they are much appreciated.

Hi Jenny - how are you all today? Hows DD doing on the CPAP?
Are you still pretty uneasy about spending all day at the unit? I remember i was massively so at the start too. DD went breech during labour then her heart rate fell to 40bpm so she was an em section and they didnt rush to discharge me just so i could visit her easily but in those early days i too found spending time with her v hard even when my ward was just down the corridor. I think i found the very sight of her shocking and upsetting to start with - which made me feel guilty and then i felt even more so as i was the one responsible for her looking that way - or so i believed. But those feelings pass, your daughter will grow and grow and become more alert there'll be less tubes and you get used to it all. I agree with what another poster said about treating spending most of your time at the unit as if it were your job - but work up to it slowly, its a marathon so go at your own pace.
As for the epressing i used those sterile bottles you can get from the unit and aimed straight into there - my flows never been so massive that i overwhelmed one of those and yet DD is doing fine on it. Shes 6 months tomorrow and was 10lbs 2 oz at her last weigh in on Friday. I still remember the terror of taking her home at a weeny 4lb 2oz and wishing i could steal a nicu nurse too.

Hi

Congratulations on the arrival of your baby girl. I just saw your post in active conversations and came on to post a few breastfeeding links in case they are of any help. Best Beginnings are developing a DVD about breastfeeding a premature baby. Kellymom has loads of info on pumping, including when a baby's not able to breastfeed. There's also an excellent video here about how to increase your output by combining hand and pump expression, and also breast massage., specifically for mums in your position There's a video here showing hand expression, but don't be put off by the squirts of milk -little drips or dribbles are perfectly normal and all good . Another thing you could consider when you see the breastfeeding person is to ask whether it might help for you to be prescribed Domperidone. It's a drug that can be used to increase milk supply.

If you need more specific help with breastfeeding or expressing then the breast and bottle feeding topic here is good, or you can ring the National Breastfeeding Helpline on 0300 100 0212.

I hope you start to feel less sore soon and that your little one goes from strength to strength.

Evening poppet we are all doing well, DD has been promoted to the next room, one closer to the door :) still in high dependency but out of the room with one to one nursing and into one with the same number of nurses but more babies, seems like a very positive step.

Yes, still feeling uneasy, as I can't drive I don't really have a choice when I go though, so I am going to be there pretty much all day tomorrow for the first time. Scared but it's happening so I better deal with it! I completely identify with some of your thoughts and feelings, especially regarding how upsetting my poor baby looks covered in tubes and wires and how guilty that makes me feel. I just feel like, as a woman I am supposed to carry her for 40 weeks, or at least until she's ready to come out. It was all me that was poorly, there was nothing wrong with her, she was perfectly happy in there....

Hi pesto thanks so much, these are really useful!

Yey for the move, always such a positive step, bit by bit your DD will sneak her way out of the unit and home to your arms - and if shes like my DD there she'll stay for a good 4 months, hence my one handed typing. Good luck for tomorrow we're all rooting for you!

Hi lamb, wow - your posts have made me realise how many ladies go through the tough icu ride before they get their babies home. My little lady was born at 28 weeks weighing 660g due to a rubbish placenta. Guilt by the buckets if I think about it at all but I try not to. I really believe that it will only come home to roost for me if I ever carry a big fat healthy baby.
We spent 12 weeks 3 days in neonatal and I honestly thought it would ever end. My daughter is now 8 months actual (5 corrected) and weighs 5.5kg. Doing very well. No different from any other 5 month old except that she is tiny on the charts.