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

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

efeslight Fri 17-Feb-12 17:00:54

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!!

SofiaAmes Sat 18-Feb-12 00:11:13

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 smile x

Poppet45 Sat 18-Feb-12 12:34:40

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.

efeslight Sat 18-Feb-12 14:34:48

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

SofiaAmes Sat 18-Feb-12 16:20:54

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 smile

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.

Yorky Sat 18-Feb-12 20:42:16

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 smile

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 blush 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 smile 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 smile DH keeps trying. I am terrible for pushing myself though sad 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.

Sterny Sat 18-Feb-12 21:03:22

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.

Sterny Sat 18-Feb-12 21:22:36

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.

SofiaAmes Sun 19-Feb-12 00:49:39

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 smile )

Poppet45 Sun 19-Feb-12 10:26:16

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.

Dysgu Sun 19-Feb-12 12:51:43

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

Consort Sun 19-Feb-12 13:41:19

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.

Poppet45 Mon 20-Feb-12 19:44:27

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.

PestoPenguin Mon 20-Feb-12 20:12:50

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 smile. 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 smile 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!

Poppet45 Mon 20-Feb-12 21:27:34

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!

clabsyqueen Mon 20-Feb-12 22:26:23

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.

clabsyqueen Mon 20-Feb-12 22:32:08

What are you supposed to do in neonatal? Nothing!!! Just be there to start feeling comfortable with your little lady. I didn't hold my LO for 3 days and what helped was a nurse who forced me to do it. After that I tried gone more assertive and it was the best thing I did. Hold your baby as much as you can. I have to admit it was stressful sometimes - rubbish chairs/stroppy nurses/screaming huge babies but this nurse made me really believe it was the best thingcould do for her. No one else will hold her the way that you can/do.

clabsyqueen Mon 20-Feb-12 22:39:06

Sorry for typos. Using a handheld. Your baby will never remember the time in neonatal so don't worry about that. I would also say try to be patient about the bond between you. I saw my daughter as a 'job' for a while. She was just so tiny - only 4lbs on discharge. It was only when she was slightly more robust that I felt I could really cuddle and play with her. Well, I could go on FOREVER about this topic. Sorry! Stay strong and most all be patient ( not my forte) it sounds like she is doing well but there are always ups and downs in neonatal ( we were sent back to intensive care after 9 weeks!! Arghhh) take care

Hi clabsy thanks for sharing, I too am surprised how many people seem to go through this. Since I had her, the number of people with comments like "oh yeah, my first was born at 27 weeks" has truly surprised me. I really think the media and other people need to stop perpetrating the myth that you will have a perfect 40 week pregnancy and a easy, normal birth where you will bring your child home after around 6 hours. I really feel like that was what I was led to believe, I NEVER expected this.

I have been holding her, your right, I know that no one else can do it, it kind of feels like my instincts are wrong though, I want to stroke her and kiss her and mainly pick her up and take her home. I know I will get there, it doesn't feel like it right now though.

Can I ask about the actual and corrected ages, which one do you use? I'm assuming corrected is how old is she past her due date? We will of course be celebrating 2 birthdays smile but with regards things like development, do they look at corrected age? I can't help worry about her development along with everything else.

leftmymistletoeatthedoor Tue 21-Feb-12 10:32:11

I haven't been through this but wanted to wish you and your dd all the best.

My ds's friend was born at 26 weeks. She is now the tallest girl in her P1 class and is lovely and bright and healthy and adorable.

circular Tue 21-Feb-12 14:11:45

Also wanted to wish you well.

I have been through it, DD1 is 14.5, born 28+1, 875g. Small for gestation as a twin.
Very poorly to start with, 10 days fully ventilated, a few weeks on C-PAP, then oxygen right up until coming home. 110 days in hospital in all.

My info may be a little out of date.
I only got to hold her once or twice while on the full ventilator (ond not at all for the first few days), but once that had gone, there were much needed cuddles daily. And DH and me did all the nappy changing and feeding when we were there.

Expressing was one thing that came very easily, but I know I was luckier than most there. I used a hand pump, every 4 hours night and day.

With regards to the age adjustment, she was adjusted by 3 months right up until her 18month check at 21 months, then the correction stopped. This was for most milestoes, except going onto solids which wass somewhere between the two ages, as the gut would me more mature than the gestational age.
I recall the hospital saying as a guide that those around 27/28 weeks adjust up until age 2, those 23/24 weeks can ba up to age 5.

There was a really helpful book that the hospital had, written by parents called 'Born Too Early' that explained things very well, in layman terms. Not sure if that's still around.

Although you may not always feel like it, get lots of pictures / videos. We wish we had more in the early days. DD1 not over keen on looking at them, but our 9 year old DD2 finds it absolutely fascinating. We recently came across a 'hat' that the nurses made, out of gauze and tape plaster. It is slightly larger than a ping-pong ball.

And, just for the record, DD2 was 3.86kg AND 3 days late !

crazymum53 Tue 21-Feb-12 14:45:46

Reading your post rings a bell as I remember feeling like that when dd was born prematurely at 27 weeks (plus 1 day) weighing 1 lb 7oz. I had pre-eclampsia too and this seems to be the case for a high percentage of such births, particularly with a first baby. Doctors do not know what causes pre-eclampsia - other than it often runs in families (not in my case though) and is more common for a first pregnancy. So basically nothing you have done could have caused this to happen or prevented pre-eclampsia from starting. The only "cure" available is to deliver the baby as soon as possible.
Does your hospital have a parents support unit or counsellor you can talk to about how you feel?
My dd is 12 years old now and has no memory of being in NICU now - she doesn't like hospitals though so perhaps there are hidden memories there. She is bright, lively and doing well at school. Hope you find this encouraging. wish a forum like this had been available 12 years ago!

clabsyqueen Tue 21-Feb-12 19:36:58

Hi lamb, I think that someone posted about corrected ages a bit earlier - we use her due date (corrected age) to work out her age for judging how her development is going. This continues til age 2 as far as I know. Weaning however does use their real age because the tummy has been digesting since birth and so is more mature and prem babies really need their protein and vitamins. Breastmilk although fabulous is designed for fat full term babies who have laid down great stores of nutrients in the womb. It is sometimes not enough for prems (esp the growth restricted ones like my lady) so don't feel bad or be surprised if the docs add a supplement (fortifier to your milk) and you will definitely come home with a list of vitamins and stuff to keep your lady healthy! We had a huge chart which is finally reduced down to vitamins and iron in the last few months.

crazymum53 Wed 22-Feb-12 10:42:21

For more information about pre-eclampsia you may wish to contact Action against pre-elampsia APEC see link for leaflet APEC.
It is a good idea to keep expressing as long as you can and it sounds as if you are doing well. At the moment your baby will only need small amounts of milk so you are doing fine but agree that it is not easy. Even mothers who have had a normal full-term birth find it hard to establish breast-feeding after a C- section so this is another factor to bear in mind. Hope this helps.

Poppet45 Wed 22-Feb-12 11:04:21

Hope yesterday went well Lamb - was DD's half birthday and i still cant believe we've made it through a 6 months like that. clabsy ahh the meds chart that's soooooo where were at right now, 11 syringes of 5 different meds a day here. And we had the fortifier for the milk too and some formula top ups when she first came home.

CelticPromise Wed 22-Feb-12 11:22:04

Hello lamb and congratulations. You have had great advice so I won't add to it, just wanted to say that I ended up taking domperidone to up my milk supply and it worked. DS was born at 27 weeks weighing 1lb 4oz, spent five months in hospital and came home with oxygen. He's 2 now, a bit behind but catching up all the time and expected to be completely normal.

Best of luck to you. Any NICU mum can relate to how you are feeling. It's tough but you will come out the other side.

Mandy21 Wed 22-Feb-12 13:04:25

Hi, just wanted to add my story - I went into labour completely spontaneously at 27+4, they managed to stop it for 48 hours but I had my twins at 27+6, each weighing 2lb 6oz. I was always told twins would come early, but even when I got back ache that morning that was "coming and going", it NEVER once occurred to me that it might be labour. I think when its your first pregnancy, you don't know any different. I too completely agree with the issues of feeling guilty - think that took a long time to go away and made me quite protective / obsessive about their care in the early days because I subconsciously thought it was down to me to do all that to somehow make up for the fact that I hadn't been able to keep them inside for longer. I also felt at the very start that they weren't my babies - the fact that I didn't know how to handle them (I was so concerned that I'd hurt them - they seemed so fragile), the fact that I had to ask if I could have a cuddle / do their cares etc - just felt like it was happening to someone else. That does get better, honestly, as you get to know your baby and you become more familiar with the unit.

We spent exactly 2 months on the unit - they came home at the equivalent of 36+5 although they'd told us to expect it to be their due date. I remember thinking that was 3 months away and just sobbing. A lady I got to know who had a baby on the unit (a term baby but who'd had the cord wrapped around his neck) came to tell me after a week they were going home and I just crumbled on the spot (in a kind of why can't that be me way). I think its so emotional and whilst it is very hard to deal with that, its entirely normal!

So top tips (for what its worth)
1. Keep a diary - there will be days when you'll have a seemingly backward step but it helps to look back and see how far she's come.
2. For the expressing - agree that you have to do it a couple of times during the night and as often as you can during the day. I also found that having something that smelled of the babies massively helped (sounds bizarre but I used to sniff the little fabric goggles they'd worn when they were under the lights, or the little hats they had) and spread photos of them around the bed. Also, eat. That was my consultant that advised that its not the quantity of liquid that you take in, but the quantity of food which aids milk production. I used to have almost an extra meal when I woke up to express in the early hours. Persevere - I think it helps you emotionally / abates the guilt a little bit etc. They were completely breastfed before they came home, and carried on until they were 1 (I hired a double electric pump for 2 or 3 months until I had time to get going with a hand pump).
3. Be there as much as you can - you feel in the way to start with, but I was lucky to stay at the hospital for 3 weeks with them - sat next to the incubators all day. Got to know the staff, they got to know me, and it was fine. Also meant I felt more involved / understood the decisions that were being made about them and that in some ways made me feel more of a mummy. Does your unit have a parent room - can you ask to room in? Our hospital had a parent's unit where there was a little TV room, a kitchen and bedrooms that were used for rooming in. Meant you could get away from the actual unit and have a coffee etc but still be at the hospital.
4. Your DH - it is SO hard for them, they do feel helpless, feel like they have to be strong for you but at the same time, coping with the situation themselves. We really struggled, but as with everything, it gets better with time, just keep talking. My H used to go and sit with them / do cares each Saturday and Sunday morning, which gave me a bit of a lie in and chance for him to see whats going on.
5. Have you been on the BLISS website - charity for prem babies - has a forum where you can post questions and lots of links to explain things. There also might be a group in your area - I went to my local one and found it was really good.
6. Don't beat yourself up about whats happened - it wasn't anything you did, try not to feel guilty, just think that she's here now and you can be the mummy she needs. Take each day as it comes - of course you're desperate to take her home but think of it in weeks - I think my first aim was for them to get to 30 weeks with no issues, then 32 weeks etc.

My twins haven't had any issues at all associated with being prem - caught up with all development milestones by the time they were 2 and we were signed off by the hospital. Now almost 7 - both at the top of their class. We still take them back to the hospital each Christmas to take a tin of chocs for the staff - one of them
said quite early on "why do we come back here mummy?" (no recollection whatsoever).

Good luck - keep us posted. (Sorry that got so long!!)

Congratulations! We're now 14 months down the line from my son arriving at 26+2, so I completely understand what you're going through. I'm not going to do the emotional stuff because others have covered that really well (although do check whether there's a psych or priest who comes round to NICU if you want to talk - there was at St Thomas' where we were), but here are some practical tips:

* Eat porridge, flapjacks etc to stimulate milk production. Also try the Neuner tea bags from Expressyourselfmums - actually quite tasty.
* Express loads, unfortunately. I used to come downstairs in the night and watch comedy shows on mute with subtitles just to make the whole thing slightly less gruesome. Oh, and Top Gear blush
* I couldn't hand express at all, made me feel sick. I found the hospital pumps the best thing, and ended up hiring a double Medela one for about a year.
* The usual tips for looking at photos etc didn't work for me at all - I found the best thing was to switch off and go elsewhere whilst expressing, just relax a bit. Reading fanfiction on my Blackberry for some reason worked blush
* As much kangaroo care as you can! Whilst in hospital we couldn't do a lot as my son couldn't keep his temperature up, but I got a Kari Me wrap sling and carried him everywhere for a few months when we got home - gorgeous way to bond.
* Talk to the nurses. Take notes. Stay on top of what is going on.
* Fight like a tiger for your baby. That is not my tip - our neonatologist put that in a book on Prems, but it is completely and utterly true. You already know your baby the best, do not hesitate to speak up for her.

Best of luck!

Oh, couple of other things!
* A bit of chocolate just before you express. I was told a sugar boost was useful. And it worked!
* Get all of the Bliss leaflets. There was one in particular about communicating with your prem that I found really useful - how to tell when they were distressed etc (e.g. yawning, hiccups). You can download them online, or our Unit had copies.

Message withdrawn at poster's request.

Poppet45 Thu 23-Feb-12 17:23:56

How are things today Lamb?

Hello, not got time to reply to everyone but huge thanks for all the stories and lovely messages, will have a proper read later tonight.

Not had a good day today, she has an infection in her blood and they are really worried about her bowel/tummy, it is distended and she has not had a proper poo since birth. They are treating her with a second course of antibiotics for her infection and she had a platelet transfusion earlier today. They are continuing to give her suppositories but if they don't work she will likely have to go to Manchester for further investigation/surgery.

I'm feeling really low and fed up, no matter how much they warned me there would be bad days I'm a bit overwhelmed by it.

Poppet45 Fri 24-Feb-12 11:27:47

Oh hunny I'm so sorry you're going through such a tough time. The infections are terrifying - Willow had to have a lumbar puncture for suspected meningitis at one stage and i was so so fearful for her. The bowel issue is a real worry too after 3 weeks without a proper poo, are they worrying about nec? Sending you all positive thoughts.

efeslight Fri 24-Feb-12 11:34:11

Hello again lamb, sorry to hear you're all having a bad time at the moment, hopefully the antibiotics will kick in swiftly and some pooh will appear - is she weeing ok? the anti biotics made my little boy swell up, just fluid retention, it was terrible to see him look like he'd been beaten up, but it went down after about a week... thinking of you x

beckyboo232 Fri 24-Feb-12 11:52:58

Hi just want to add my story and support. I had my son at 26 weeks a crash c section after my placenta ruptured, we both nearly died. Like you I felt on auto pilot for what seemed like forever what made a huge difference to me was the kangaroo care, ds had numerous infections and as soon as I put him on my chest his heart rate would calm right down, he knew who I was and I knew no one but me could do that. Expressing is hell isn't it? Well it was for me though eventually my supply came in I found a glass of tepid water to sip helped and I didn't bother trying to hand express the electric ones were more painful but better. With regards to the other parent I found the same no one really talked but now I regularly meet up with several parents from neo, we were just all so scared and shocked at the time we were not able to help each other. My son fought 4 infections including septicaemia, had 3 operations on his stomach and bowel and now is a happy healthy 3 year old who doesn't believe me when I tell him how tiny and sick he was smile I kept a diary with photos and notes as well partly for him and partly to help me remember all that as said. Thinking of you (((hand held)))

Poppet45 Sun 26-Feb-12 16:46:30

Sending positive thoughts to you all.

clabsyqueen Sun 26-Feb-12 20:39:28

Oh gosh, stay strong. Keep going. Take every day as it comes.... and a million more cliches you might not want to hear but PATIENCE will get you through this. Distended tummies, antibiotics, transfusions and suppositories were all I thought about for months. Even on the day we were being discharged I was asking for a suppository for my lady and comparing her belly with photos I'd taken on it a week earlier.These little ones have so much trouble with their tums that it's hard to believe they will ever be normal. I couldn't give my lady a bath for at least 2 months after coming home because there was so much air in her belly that she would tip upside down if she wasn't held down by the ankles. Too stressful! Getting older is usually the answer to all the tummy troubles but it feels so painfully slow and the docs have to follow up every tiny thing 'just in case'. It's sooooo hard to stay positive. Thinking of you!

So, SHE HAS HAD TWO POO'S!!! grin I never, ever thought I would be so excited about poo. DH changed her today and got the second one, he was so chuffed, it was adorable. It was all a bit worrying over the last couple of days, there was lots of worry about nec yes poppet but it's looking better now, although they are still testing for it. Her tummy started bothering her and she was starting to get distressed but all seems to have subsidised now smile

Thank you beckyboo it's really reassuring to hear all these lovely stories and also that this is not going to scar her emotionally. Expressing is a nightmare but I think I am getting somewhere,

Thanks for all the tips penguin I can definitely get on board with chocolate before I start smile but it was actually really useful to hear that someone else is better not doing the whole pictures and focus on her thing. I am better just reading and letting it work as I am more chilled, it is noticably more fustrating and I produce less if I am stressing about it. Spoke to my GP about potentially percribing something to help and she said there are no medications for it hmm but i am seeigmg a different one next week.
Can I ask how you fought for your baby? DH and I are concerned that they are constantly trying to feed her even though she has never kept it down and just produces dirty aspirates, I have asked why they are doing this but am not really satisfied, surely she isn't ready for it, she wouldn't be 29 weeks yet.

H efeslight she is weeing fine, they did mention the swelling might be down to the CPap and lots of air in her tummy.

Think I'm getting my head round it all a bit more now, im not feeling great, my section scar is infected and painful and my back and bum are causing me all sorts of bother sad sleeping is a bit of a nightmare but really the least of my worries.

DH is back at work now which is making it even harder for him, thanks Mandy I asked I'm to go on his own tonight and I think it was good for him (and he got a pooey nappy) and I got a little break. You are right about the diary, i have been keeping one and it's a good place to vent I find too.

This thread is so useful and fantastic, thanks so much for your all your replies and help. It has meant so much to realise I'm not the only person to go through this and that they often come out the other side unscathed smile

CelticPromise Mon 27-Feb-12 21:56:38

Hi again, how brilliant she has pooed! I remember getting so excited about DS's first poos.

With the feeding, their guts do mature quicker than term babies and your milk will help this to happen. With DS I am pretty sure he was managing tiny amounts of milk by about 29 weeks. Hopefully the poo is a sign things are getting better.

When you see the GP ask specifically for domperidone. My GP hadn't heard of it being used for milk supply either. It's an anti-sickness drug normally. I've also heard it's available over the counter but I've not tried to buy it myself.

Hope your little one continues to do well and that your scar heals soon. All the best.

clabsyqueen Mon 27-Feb-12 21:58:30

Yay! Great news on the poohs! Must be a big relief - for everyone!!!

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

efeslight Thu 22-Mar-12 09:16:51

hello littlelamb, thinking of you, and hope all is well x

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 smile her infection has completely cleared and she is tolerating 16ml feeds with her tummy and gut working perfectly (lots of poo now grin). 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.

Managed to upload a couple of pictures if anyone is interested smile

BadNails Thu 29-Mar-12 14:13:10

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 smile

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 smile

Hiya, she is just beautiful isn't she smile

Well, since your post. Is all gone wrong again. She has another infection, they are talking about NEC sad 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)

jjkm Mon 09-Apr-12 16:37:01

I had a nurse tell me the first month or two are most important for getting them milk, which you've done. I pumped the whole 4 month SCBU stay (and beyond) and was constantly starving and exhausted because of it. It limited the time I could spend without getting sick from hunger and/or passing out. At times I wondered if I should have quit sooner.

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 confused"

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 Mon 09-Apr-12 18:04:13

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 hmm

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 Mon 09-Apr-12 20:39:40

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 Tue 10-Apr-12 22:47:16

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

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.

jjkm Sat 14-Apr-12 20:40:59

My sympathies. My girls didn't leave until 6 weeks after their due date, and with feeding tubes. They are now really happy and well attached to me, though, so it has worked out.

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 sad.

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 Thu 19-Apr-12 15:24:55

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.

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 Thu 19-Apr-12 20:01:34

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 Thu 19-Apr-12 21:20:47

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 Thu 19-Apr-12 23:22:28

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 Thu 19-Apr-12 23:25:22

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.

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. blush 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 Fri 20-Apr-12 21:40:05

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 Fri 20-Apr-12 22:37:30

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 blush 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

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 smile 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 smile

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 Mon 30-Apr-12 04:49:29

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.

jjkm Mon 30-Apr-12 06:00:42

Wow, that is quick! I was terrified the first month my twins were home. I couldn't tell you how many times I checked to make sure they were still breathing. One was going to come home on oxygen, but she was weaned off of it two days before she was due to come home, and they sent her home without it (partly a relief, partly terrifying). With the other twin, they told me around 11PM the night before that she was scheduled to come home the next day (also no oxygen, but both had feeding tubes).

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!

efeslight Mon 30-Apr-12 10:45:33

Great news Littlelamb, scary but exciting...yes, its quite a shock finally going home, and everything is down to you!
it sounds like Sophia is doing really well, I'm so pleased for you. what is her weight now?
Can i be nosey and ask what the rectal wash out is for? Is it a tube up the bottom to clean out the poo? with or without liquid? I only saw our little boy have this done once when he was really tiny and couldn't push for himself.
Hope all the plans and preperation for homecoming go well.

Hiya, she is 4lb 4oz now!!! That's huge!!!

A rectal washout is tube up the bum and saline solution through the tube. It's to clear out poo as she has 'slow mobility' although she is starting to open her bowels on her own now which is fab smile

I can't believe this journey could actually be ending, I'm kind of expecting something else to go wrong before we get her home must engage positive mental attitude

efeslight Sat 05-May-12 11:56:34

Great, 4lb 4oz is a good weight, our little one was about 5 lbs when he went home.
yes, keep positive and be as well prepared as you can be, have you got a midwife or health visitor? How often will she need to be weighed and by who? will she be on any medication, is there a timetable for this, and have you got enough to last?
have you got many follow up appts to organise? i remember there was so mcuh to think about, use the time now before she comes out of hospital to have everything ready.
i have to admit, going home was harder than i expected, i think i just thought that all the worries and problems would end, but of course they didn't...but it was great to finally start to be 'normal', and be at home together.
best of luck x

BadNails Tue 08-May-12 10:36:56

Hi Lamb, that is brilliant news grin By now, you must be almost shipping out! I have to say that I didn't find going home difficult; we had already come close before Gen became ill so I kept saying to all the nurses that I wouldn't believe we were leaving until she was in her carseat and we were walking out of the door. Unfortunately, it meant that I didn't become excited about it, I wouldn't let myself.

It is amazing having your baby home and I am so pleased that you're nearly there.

I'm with efes though, I still worry and I still gird myself for battles with doctors. Most of the worry is normal 'I'm a mother' worry though, which I recognised from having had DD1, otherwise I'd probably have thought I was some kind of freak... Even now, I still check her breathing more than I care to admit blush

Wishing you lots of luck for rooming in and going home xx

Hiya, well we had a night in the unit on Friday night, it went well but she still had the stats monitor which she won't have when we go home. The oxygen is ordered and it looks like we are going to stay over again on Thursday before we take her home on Friday!!

BadNails you have put my exact feelings into words, we were discussing with another mum today how we are not really getting excited because it just doesn't feel real. Everything is ready for her except oxygen and we have talked though everything but I still wont except it until we have walked of of the unit without anyone stopping us!!

I think I am pretty sorted with regards health visitors and outreach teams, we have met pretty much everyone who will be coming out to us, all very lovely and supportive and we will have a visit every day for the first week and then we talk about how often we would like them to come after that. DH is off for a month now so he will be here to help smile

Medication is all sorted, as is prescription formula, all already in the house and on repeat from the GP's (luckily at the end of our road with pharmacy).

Anything else I need to sort?? Never, ever, ever thought I would be asking to advice about what I need to sort on our way home!!

Oh god, I won't accept it, my spelling/grammar appears to be the first thing to disappear when I am stressed.

Poppet45 Tue 08-May-12 21:52:27

Wahoo Lamb that's great news!!!! And super scary, terrifying etc etc. I wanted to smuggle out a NICU nurse when Willow finally got her bid for freedom. The first few weeks are pretty scary and between BFing, topping up, sterilising, syringing in 11 meds a day and pumping milk were pretty tough over here, and I have no idea what you have to do with bottled O2, but it WILL ease off and you will get there and so will your wonderful daughter. Willow is finally starting solids as of this week. You should see her grinning like a banana covered gloopy thing. Your little gal will be doing this too before you know it, and these days will feel like a dark and distant memory. Until then we're here for hand holding. Good luck!!

scummymummy Tue 08-May-12 22:13:04

Oh, good luck with having her home. So pleased she's rallied and is doing so well.smile

crazymum53 Wed 09-May-12 11:51:12

Am delighted to hear your good news. Being at home with your baby is a different experience and a chance to properly bond with your baby. Feeding at home was actually much easier as it is less noisy and with fewer distractions than in hospital.
Additional advice: Make sure you have plenty of nappies and wipes available at home too!

Ahhh, the oxygen has finally arrived!!! If I wasn't so excited, this would be followed by a rant about the bloody oxygen company.

Which means Sophia is actually coming home on Sunday!!! grin

The most amazing thing is that Sunday is my mums, who passed away two years ago, birthday. She is so obviously being watched over. Sophia has my mums name as her middle name and my mum woud have been so proud of her.

I cant sleep at all, hence the late night posting, I can't believe she is coming home. We are staying over tomorrow (saturday) night and then will be up bright and early to go home on Sunday. Eeeeeeeeeep!!!!!

Also thanks everyone, and crazy DH has been bulk buying wipes and nappies so it currently looks like we have a lifetime supply. I'm sure it won't last though.

BadNails Sun 13-May-12 09:35:15

Oh LittleLamb...<sniff sniff> <pulls self together> I hope they've completed your discharge nice and quick so you can get your girl home.

Absolutely thrilled for you. Thank you for sharing yours and Sophia's journey this far. Wishing you lots of love and luck thanks

McPhee Sun 13-May-12 09:46:40

Oh my goodness, what a journey you've all been on. It's brought a lump to my throat to think of you bringing her home. Many many fabulous wishes of congratulations, you very very strong mummy.

What a lucky little girl smile

thanks

We are home, there is A BABY IN MY HOUSE!!! I cried for about an hour this morning, I'm not normally that emotional but I couldn't believe they let us leave! The nurses were amazing at getting the doctors to complete all the discharge stuff and our take home meds arrived at 6am this morning.

She is currently fast asleep on DH chest while he plays xbox and I mumsnet clean the house. I don't know how I'm going to fill my days now I don't have to go to hospital.

Thank you all so much, have lots of thanks for all your wonderful support, mumsnet has been a lifesaver over the last 93days!!

McPhee Sun 13-May-12 12:51:22

Amazing smile

Now enjoy every tiny bit of her. She has an amazing mummy and daddy [flowers]

scummymummy Sun 13-May-12 20:14:49

How lovely.smile I hope you are having a wonderful first day at home together.

Poppet45 Sun 13-May-12 22:49:37

Congratulations on the happiest homecoming you'll ever, ever have. Scary too, but the sweetness of getting them home is hardwon and well deserved. Sophia is an amazing wee gal, just like her mum! We're all rooting for you as you settle in to family life. And even without hospital trips they manage to keep you busy. That said, nothing is as intense as what you've been through already. So many best wishes to you all.

efeslight Mon 14-May-12 09:53:36

Great news, hope all goes well and you have lots of time to snuggle!

Thank you all, I have put up some pics so everyone can see how bloomin gorgeous she is. I can't believe I made something so utterly amazing.

scummymummy Mon 14-May-12 18:44:03

omg. she's beautiful! lovely photos x

ImissMiniPop Fri 08-Jun-12 10:13:28

I've just read this post from start to finish, and I wanted to wish you all the best for having your little one home. She is beautiful. It's really reassuring to read your posts, my little boy was born by emergency c section 10 days ago and was also in the HD unit of NICU, he's now in SCBU but we've a long road ahead and a few hurdles to get over. Can't wait for the moment when we get to take him home. Thanks for sharing your thoughts, and wishing you all the best. smile x x

ImissMiniPop Fri 20-Jul-12 20:13:06

gotmylittlelamb how's it going now DD is home? how did you find the first few weeks? We've got MiniPop at home after 6 weeks in NICU/SCBU, so any hints or tips would be very welcome grin

Hi ImissMiniPop it's incredible having DD home, I have really relaxed into it and everyone comments how confortable I seem with her. I have found the oxygen so much easier thatn I was expecting (ignoring the time we were emergency ambulanced to hospital because the oxygen compressor at home had failed).

I have no idea about tips and stuff, I have realised recently how quickly she is growing, now 9lb 6oz shock so I have resolved to stop cleaning and just cuddle her lots and really enjoy her, take advantage of any support, I have found the paediatric outreach team in our area a godsend. I have also been going to a group called neomates which is particularly for neonatals, I found the 'normal' baby groups a bit intimidating.

Feel free to PM me if you have any questions, i will try and answer but I'm probably not the best, and congratulations!! I don't think anyone can understand the feeling of leaving the hospital with your baby after this experience.

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