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Premature babies - anyone been through it to offer some moral support it'll get better?!

Discussion in 'Parenting' started by MisterFlibble, Apr 15, 2012.

  1. Never did get to finish me Easter egg (full birth saga's on the Summer 2012 thread but it was Not A Good Birth - some ridiculous hospital incompetence of jaw dropping proportions that I'll have to come to terms with emotionally at some point - suspect I'll prob need counselling tbh)... but ended up having my lil girl at 33 weeks 6 days gestation at the start of this week (weighed a smidge under 5lb, has lost 6% of bodyweight since then, being tube-fed with some breast attempts that I've now pretty much decided to relegate to just whatever expressed breast milk I can come up with - if it's going to get her feeding and out of here sooner - I'll put the pride and convenience of breastfeeding to one side without a second thought).
    Very very traumatic birth, didn't get to see her before she headed to NNICU (well I got to see one bluey-white head of hair) - but she got out of there pretty quickly and we're currently on an absolute hell-hole of a hospital ward with a mix of neo-natal transition cases, and the routine post-birth stay ladies (I cracked today and demanded hubby bought me a wireless dongle and my laptop in)... and being supported to variable degrees - from questionable, to utterly unsuportive - I have more important patients to see to so I'm not even going to TELL you I'll support you - harridans. Trying to type this fairly quickly so leaving out the details, most of it's on the pregnancy thread (think I just terrified all the summer ladies popping so soon) - but it's pretty shocking ineptitude.
    So I was wondering if anyone on here had been through something and come out the other side - since I'm not getting the information from the staff - I have to find it somewhere else.
    Can't quite believe life hadn't finished having a laugh at our expense baby-wise... years of fertility bother, miscarriages... thought we'd finally nailed it - and get prematurity thrown into the mix! Some git up there has one vile sense of humour!
  2. Well- crikey. I'm so sorry you have had such a shock. Big congratulations on the birth of your little girl. She is alive and in the best place. I spent a long time in hosp (full saga on winter babies 2010/11) and a good friend of mine had her baby at 33 weeks after a spell in the same ante natal bay as me. You have been robbed of the exciting - but hard work!- end of your pregnancy. You won't walk out of the ward 2 days after birth feeling sore but with a big smile on your face and a baby in your arms. You now have time on your hands to feel confused, angry and upset as your hormones continue to cause havoc on your newly post natal body. These next few weeks are about survival. You, your relationship, your family and your baby girl. Post natal wards are a total blod bath (literally) and everyone wants to get the hell out ASAP! You have to look at the positives. You will have time to regain your strength and heal whilst visiting your baby daily. You will survive, and your emotions will be rocky - you're grieving for the experience you should have had and the injustice of it all. We are the lucky ones. We live in a developed country with the nhs, and although sometimes care etc is shocking they're quite good at keeping you alive. There will be very dark times. My husband I had many- and we reminded ourselves that we are the lucky ones because we got to take our baby home. You will get to take your baby home too, and life with a little one will in a few months be much the same as everyone else's experience. Don't try to over analyse your feelings. As I said this is about survival. 2 days ago I met up with my hospital buddy who had her baby at 33 weeks. She showed me a letter that she had written to the hospital about her experience. It took her a year before she could write it. Our babies are now 14 months old and we read her letter together in tears 2 days ago. She felt much better after getting It down on paper but took her a year to have the courage to do it. I still have the odd moment now and again, and you will too. Somewhere you have an inner strength to deal with this, because you are a mummy, and it's remarkeable what we can do. Much love, SR x
  3. Oh my - what a terrible, anxious time for you. My little girl was born at 34+5 weeks so not quite as early as your daughter. Whilst I was fortunate and had time to see her etc, she did spend time at the neo-natal unit. She was tube fed and I don't think I changed her nappy for a week! I'm not sure if your daughter has extra complications as mine was in due to jaundice and establishing breastfeeding (which we did do in the end). Now, she is a bouncing 15month old who has surpassed her peers in both weight and height and whilst she does take a little longer to reach certain milestones (we're currently waiting for her to walk) she has, in no way that we know of, been affected by her prematurity. I think the important thing here is you. Your daughter is in safe hands and you are there to be with her. But make sure someone is there for you too. Your OH will have had to witness you going through what sounds like a traumatic labour and probably couldn't do anything to help. He too will have had an experience that is traumatic and now he'll have to be there for you too (is anyone there for him?!) I think you need to take one day at a time (I stayed in hospital the whole time my LO was in and it was like being in a prison because the guilt when you leave and your LO doesn't is too hard to bear more than once - I had Christmas Day evening at home whilst LO was in hospital and I hated it). Take it easy, if possible. I don't think you need to worry so much about your daughter as she is in good hands but make sure you are OK - those hormones are a b*gger at the best of times, let alone on top of your experience. xx
  4. kittenmittens

    kittenmittens New commenter

    I don't have any experience of premature babies myself- LO was 4 days late-but wanted to say congratulations and send my love. Nobody expects to go into labour that early and it must have been terrifying and traumatic. Your daughter sounds like a little fighter though and every day will be getting stronger.
    Postnatal wards are horrible, I was only in for 3 days but never slept a wink- silly women making loud phone calls at 4am, buzzers going off every 10 seconds, ugh. Blood everywhere and feeling like you've been run over- that was a normal delivery! Staying in for a long period of time must be a complete nightmare, compounded by the shocking level of care you are receiving, so huge sympathies... now is the time to accept any offers of help from friends and family, whether it's to keep you company, bring some nice food in, clean your house for you, bring magazines or nice toiletries to use in the revolting showers or whatever will make life more bearable. Take any meds going for your stitches, mine were a b***er as they ruptured and were v painful, voltarol helped though.
    There is a service that I think SR used that involves going through your birth in retrospect with a midwife to ask questions and clarify what happened and why- this might be an option for you later down the line?
    I'm sure you're focussing on taking your LO home whenever that will be, and then family life can begin properly... all the best xx

  5. Just read your story on the summer 2012 thread- that's a pretty horrendous experience you had there. I too had premature rupture of the membranes and they were basically saying cross your legs, but my LO came out a few hours after! I just can't believe they didn't listen to you. And to put you on a ward with a mix of neo-natal parents and 'normal' parents! At least my hospital gave me a private room for the first night 'as they thought it would be too hard to be with mummies who had their babies with them'. I really hope you're doing OK. Absolutely love the name - I was going to add with a great story behind it - but in reality, I'm sure you could have done without the prematurity bit!
  6. Thankfully the support worker on tonight is an utter angel who's been through it herself and she talked us both through adding a bottle into the mix - and the difference was amazing - she fed... properly for a good long while... while I bawled my eyes out at the first real sign of progress toward us going home at some point.
    This is in contrast to the support worker for the last 2 days who told me to eff off and get on with it basically - and sat and watched me sob as the care of the lil dot was reduced to me being given a sheet of paper in a file each day. Literally - bung this much milk down the tube, write down what comes out - like you'd leave for someone feeding yer cats while you went on holiday.
    I'm not one to wallow in misfortune - but when even staff are shocked by the behaviour of colleagues - things are badly wrong.
    Just praying the latest jaundice blood tests come back going down - we've been teetering below the treatment level for a couple of days, she loathes being under the lights - it distresses her that badly - and not sure I can face another bout of her being so sad and blindfolded... poor girl doesn't have any heels left now and I want to sob every time they do it to her.
    I don't think even THEY'VE figured out what went on with the birth to be honest -but the staff who've taken the time to know me are horrified with what's gone on... but this transitional care worker the last couple of days - she's shocking - telling people still reeling from it all to go away and deal with it and stay out of the way basically... disgusting. And I would have killed for a family room - hubby gets kicked out at 9pm every night and I'm basically woken up by the routine deliverys coming in all through the night - oh and the woman they had to shout at for two days to remind her to feed her baby... there are some "interesting" parents about to start heading through the local schools!
  7. undiwear

    undiwear New commenter

    Is your baby 8 days old yet? If she is, speak to them and tell them that you would like to take her home as you think you will be better able to look after her in your own surroundings.
    At 8 days old her liver is more mature and more able to cope with the bilirubin - at least that is the case for a term baby. But you can mention that. A midwife can visit every day (esp with it being monday) and draw blood if necessary. OR offer to bring her in to have bloods done.
    The problem here sounds like the lack of feeding within the first 24 hrs.
    IF - I have read that you are ready to throw the towel in so please don't read this as any pressure - there is excellent people in the community who are going to give you better support to establish breastfeeding. If you need any assistance finding them, just ask.
    Sorry to hear your experience has been so traumatic. Congratulations on your wee girl. I can also signpost you to complaining about the service you have received. It must be done within 6 months of giving birth for it to become a part of their statistics and to give you feedback.

  8. undiwear

    undiwear New commenter

    Sorry your experience has been so bad MrF. Congratulations on your new wee girl all the same.
    Would you feel confident asking to have her released so that you can take her home and establish feeding? Her liver is now more mature and better able to cope with the bilirubin. I also think with you being at home and more comfortable you can work solely on getting milk (whatever kind) into her. With your dh (and other family there) and off the postnatal ward you will be less stressed too.
    From what you said in your other thread, this sounds like this is a case of not-enough-milk-jaundice in the initial 24/48 hrs. Phototherapy helps but without getting milk into her the jaundice will persist for longer than necessary. The downside of phototherapy is that it also makes it necessary to get more fluids into the baby so that the bilirubin can get out.
    As long as you are stuck there, feed her before she starts to cry. No one can stop you from taking her out from under the lights and get milk into her. And feed her as often as she cues - moves head around as if she is looking for something (she is). Licking lips, opening and closing her mouth, sticking tongue out. These are the earliest cues. More active cuing is moving arms, legs and turning head from side to side. Crying is the last cue and by then she is desperate, her blood level low and is likely to feed for just a short time if at all and fall asleep quickly. As soon as she is 'done' put her back under the lights and if 10 mins later she begins to cue again, repeat. (it doesn't matter if she only takes a half oz or whatever at a time) just keep it going in as often as you can.

    If they seem reluctant to let you take her home, ask for a biliblanket to take home with you. They can also send a mw everyday to see how she is doing (including draw blood if that is what they want) and from home you will be better able to contact quality bf support if that is what you still want to do. Also you can offer to bring her in 1x or even 2x a day to have her tested. In the meantime, if you want to read up for yourself about jaundice I have a couple links to share which may reassure you.
    Dr Jack Newman (paediatrician and IBCLC) explains the types of jaundice: http://www.breastfeedinginc.ca/content.php?pagename=doc-B-J

    This technique can help you get more milk in one feed into your baby if you want to continue to try to establish breastfeeding. http://www.breastfeedinginc.ca/content.php?pagename=doc-BC

    I hope this helps. please do complain in writing when you feel up to it. If you do want to, I can signpost you to places that can help make it effective. And it must be done in the first 6 months after giving birth for it to make it into their statistics and to make them respond in writing to you.
    You sound like a fighter. You keep up the spirit.

  9. undiwear

    undiwear New commenter

    her blood sugar level low and is likely to feed for just a short time if at all and may fall asleep quickly.

    Sorry about the double posting. I had to attend to a bossy toddler and when I came back half an hour later there was a big "ERROR!" message and I thought it failed to post so I re-wrote everything. But the second was more thought through and less rushed so hopefully it is more useful.
    Good luck again.
  10. From my experience, undiwear, if a baby is under phototherapy treatment, it's not as easy as just pick your baby up out of the incubator and feed. There's enough pressure already to breasfeed without the added pressure of all the nurses watching you ignore their treatment plan etc. Yes, the LO does not belong to them, but they are trying to do a job - to ensure that baby is treated, is safe and if the hospital is anything like the one I had, they will give breastfeeding support. I had one-on-one help everytime I tried to feed my LO when she was in the neonatal unit and after a week, we went home together, feeding on demand. But, I still let the nurses do their job with minimum disruption from me. After all, they are on my side (they want us out of there as quick as possible too). What I'm trying to say MisterFibble is the phototherapy might not last long (ours was 24 hours under the light) and then I could pick her up whenever I wanted. They even came and found me when it was time for a feed (as you may well find that LO is soo sleepy she might not cry for food so they might do a 3 hourly feed regardless of LO crying).
  11. undiwear

    undiwear New commenter

    Lilypot, I understand that this is *your* experience. It is valuable as an anecdote but it isn't the only option available to MrF. If there were tubes and monitors restricting the baby I can understand why it is harder to remove the baby from the incubator, if there are none then why not feed a baby when the baby cues for milk? She will be feeding her baby! Not putting it at risk! She can consider the ideas I have presented and if they don't suit her that is fine! But I couldn't read and not offer her alternatives she may not be aware of.
    I think many of us are over concerned about trying not to upset the staff etc etc and it is the default response to just agree to ther first thing we are offered. There are alternatives which are valid but if we don't know what they are how can we ask about them if they are not being offered? Like it isn't here! I know that the nurses are trying to do their job, etc etc. I speak as someone who as also walked in these shoes but this thread isn't about me so I refrain from giving anecdote and try to give information backed up by the evidence based links. It is MrF, choice to take some, all or none of it on board.
  12. Undi, anecdotal or not you're starting to make this thread about your strong opinions and values. I don't think this is the time or place for any more of them. I know this will probably make you annoyed that I have written this, but this thread is about the op. in my opinion suggesting to a vulnerable woman that she take her baby out of special care is irresponsible- I'm sure you meant it with the best of intentions. I'm not interested in a slagging match. Take care MF
  13. undiwear

    undiwear New commenter

    I have not suggested that MrF go against the recommendations of her medical practitioners, I have suggested that she open a dialogue with them from a position of more information.
    If she thinks I am talking a load of rubbish, that if fine!
    If you had more information to add your post would have been valuable. Writing to patronise me is just adding to the noise which MrF doesn't need to hear. So I'll stop adding to the 'noise' now.
  14. chocolateheaven

    chocolateheaven New commenter

    My little girl was born at what they thought was 37 weeks. However, when she came out they decided that they should have stuck with the date they gave me at my first scan, rather than putitng my dates forward later in my pregnancy. Going on many different things, they believe now that she was only 35 weeks. However, because of my official dates, she wasn't given any special care to begin with. We were returned to the hospital 3 days later with MASSIVE weight loss (she didn't recover her birth weight until she was over 6 weeks) and severe jaundice. She was under the lights for 48hrs at varying strengths, and only just avoided needing a blood transfusion. Her little body could not cope with the bilirubin alone, and those lights saved her from a far more dangerous and traumatic procedure. She gave no cues for feeding - she simply slept. I hated having her under the lights, and just wanted her in my arms. It was so hard to leave her there and not hold her close to me, and although I could stay with her, I cried almost constantly. However, eventually her levels stayed down, the heel ****** eased off, and I could hold her whenever I wanted.
    It's such a hard thing to deal with, but personally, I wanted her to get the treatment and get better as quickly as she could, so that I could take her home knowing that she was well. I hated being in hospital, and we were only in for 6 days. They kept encouraging me to leave the ward and go for a walk around, but I just couldn't leave her. As hard as it is, the lights will help her and are the best and quickest treatment for jaundice - and jaundice can become quite serious if it isn't treated effectively.
    I had major issues with bfing, caused by failed lactogenesis. For me it was hugely important, and the fact that I couldn't ebf caused my great emotional distress. However, I have come to accept that formula will not harm her. At first, I felt like I was pouring poison into her. Now I've come to realise that actually, it saved her life and she is thriving. I would say that if you want to bf, don't give up - there is masses of support there, both in hospital and in the community if you can access it. I am so proud that my daughter breastfed every single day for almost 7months, despite the problems that we've had, and that success has helped me to heal. If you want to try, then do what you need to do to get out of hospital and get her well, keep expressing, and access all the support that you can. If you choose not to, then don't let it eat you up,don't feel guilty. She will thrive regardless.
    As for the awful staff - in any profession there are a mixture of people. When we were still in SCUBU for the 6th day and my milk still hadn't come in, I was sobbing for about 22hrs a day. I had one midwife tell me "you should have milk, you're just not trying hard enough". Not helpful. I was observed feeding by 23 different people, had my breasts examined by more people than I can remember, my daughter prodded, poked and pricked, and so many more things that I won't go into here. Once she was recovering, they wouldn't let me go home breastfeeding, because it was obvious that I had no milk, I wouldn't agree to give her a bottle, they wouldn't let me go home cup feeding... Finally, we were allocated a breastfeeding key worker who was wonderful. She said "Your milk might come, it might not. Regardless, it doesn't have to be the end of breastfeeding, and you doesn't mean you have to stay here. You don't have to go home a bottle feeder. We'll sort something out". And she did. She was magnificent, and I owe so much to her. Some nurses etc shouldn't be in their jobs, and some HCAs are doing hard jobs with minimal training. For every bad one, there is a wonderful one.
    Try to keep things in perspective, however hard it is. They may have done things in labour that you don't agree with, but they kept both you and your baby safe and well. Like you, they insisted that I labour on the bed with monitoring attached, rather than letting me walk and deliver in the positions that I wanted to be in. However, this was because it was a high risk labour, and ultimately it kept us both safe. The staff, however useless some of them are, are helping your baby to recover, and will help you get your little girl home as soon as possible.
    I think this has been a very rambling and rather self-indulgent post, but I hope that something I've said might have been of some use to you? It's such a hard thing to go through, but remember - it won't be long until you are leaving that place with your beautiful, healthy little girl in your arms, ready to begin your life together. Hugs xx
  15. bella1981

    bella1981 New commenter

    Hi MrF I hope all is ok with you and your little one today. It is a very difficult and emotional time you are going through and I send you my love. I know you will feel like you have been robbed of the normal experience and yes counselling may be the way forward.
    On July 13 2011 I was in hospital after having slightly high blood pressure and had had a number of tests and scan which all showed things were fine. The hospital were preparing to send me home and monitor blood pressure for possible preeclampsia. However they decided to keep me in until the morning at no dr was available to discharge me.
    That night things drastically changed and I spent the night in agony. I thought my rib was breaking, my head was spinning and I was vomitting blood. The midwives were less then helpful and told me to take a gaviscon and go to sleep. I spent the night crying in pain and crawling the bed. I had clenched my fists so hard I had cut into my palms with my nails and not noticed.
    Luckily for me the next morning when the shifts changed the midwives that ame onto the ward was amazing she saw straightaway that something was wrong and did not leave my side. She sent for blood tests and began monitoring baby. She also explained that she thought baby had possibly broken by rib but was going to check to be certain. She also gave me an injection of pethadine for the pain and something for the sickness.
    An hour later I was being prepared for theatre. I had developed a condition called HELLP Syndrome and the platelettes in my blood were almost none existance the pain in my ribs was actually my liver swelling. They explained to me that the condition was life threatening and although I was only 32 weeks the only solution was to deliver my daughter. My partner could not go to theatre with me due to risk of me not clotting and other possible complications. After being given 2 transfusions of platelettes I was taken to theatre.
    My daughter was born weighing 3lb 5 but was generally healthly. However I was still very ill and spent three days in high dependency before meeting my daughter. I still sometimes feel robbed of that first cuddle and a more natural experience but it has faded over time.
    I found the first week on NNU very difficult not being able to hold little one or feed her normally. I too wanted to breastfeed and was told that this may be difficult and it was at first. I spent every two hours expressing and this was given to her down tube. On day 5 DD latched at last and bf 3 times that day but we were advised to still tube feed as she became very tired. Then I had a major set back as my milk flow almost stopped. The nurses were great and DD was fed combination or formula and ebm down tube while I did a number of things to improve milk flow.
    Gradually dd was breastfed again which was great until we were told she was not gaining enough weigh. I was on the verge of quitting but one of the nurses who was particullarly helpful suggested putting dd to breast when she demanded but then we topped her up down tube if she fell asleep or we just felt she had not fed for long enough. It is a long hard slog I know and what ever choice you make with feeding you have tried what you think is best for your child.
    Sorry to hear you are having a hard time on the ward. I was lucky that due to my condition I was put in a side room on my own once I was transfered to the ward. The only thing that annoyed my was nobody really came and told me what was happening. I'd been semi unconcious due to morphene for 3 days then seen my daughter once before being transfered to a room on my own. I'd woken up at 3am not a clue where I was with a morphene free hangover. Its awful. As the days went on I was desparate to be with my daughter and was lucky enough to be partly discharged early so I could go and stay in a room on the nnu. Does your nnu have rooms for bfeeding mums? I food it so much better up there. Bfeeding was better for me as I could pop and see dd in incubator before going to express.

    It is a tough time mentally and physically but you will get through it. Hopefully you will be home before you know it x

    Sorry for the really long message just really wanted to say I'm here for support if you like. Heres my email address if you want a chat, advice or just a rant vlsmith2210@aol.com I get these to my phone so will be able to reply more easily x
  16. Was going to reply to this earlier - but I was actually so shocked when I logged on and saw how the thread had been hijacked that I closed the PC and walked away, and I've spent lots of the afternoon mulling over getting it pulled - but that doesn't do justice to those who've shared their experiences, for which I am MASSIVELY MASSIVELY grateful - just to know how I'm feeling isn't unusual, or that what we're going through does have light at the end of the tunnel... that's just what I needed right now and why I started the thread.
    A few things to clarify since the discussion turned into hell in a handbasket:
    - I'm increasingly clear I'm suffering some form of trauma from the way in which certain aspects have been handled by the hospital. I felt so trapped and cornered by the birth experience and terrified, that that, coupled with my previous history of miscarriages and therefore the idea that "pregnancy = baby death", meant I made a comment in the delivery room when presented with the choices of forceps with no pain relief and agonising pain, or forceps in surgery with a spinal block and possible long term damage from my SPD because of anaesthetised legs being put in stirrups far, far apart... of "I don't care anymore, just let me die anyway, the baby's going to die just like all the others" - this comment, and my utter terror by then after 2 days of being lied to and bullied by the NHS behemoth, meant I was referred to social services as a potential child safety risk - and the first 2 days of my daughter's life were spent justifying my reproductive history, my mental health, my abilities as a professional and my abilities as a parent (kind of hard to prove as a first-time mum to a child in a plastic incubator). Social services very very rapidly concluded there was no case to answer and that I only needed standard health visitor and midwife support - but we will always remain a family "known to" social services, it's a stigma that will always be there, and as such, I have to be seen to cooperate with everything the medical bods ask of us... and therefore any move such as discharging my lil girl would be utter, mindblowing idiocy and bring us back to the immediate attention of the authorities, putting her future with her family at stake - not to mention would be flipping stupid to discharge my one week old who's not feeding stably yet, is prematurely born and just a wee bit too small for all our comfort... and to suggest I do that to ride the great glory of breastfeeding - well it typifies all I loathe about militant breastfeeders.
    Her jaundice has been an on-off issue. She's had several stints under the treatment lights and the levels have dropped off, then bounced back up - she, like most small babies, hates the exposed sensation of being naked under them and her being distressed obviously upsets me. Not to mention the fact that her lying there blindfolded, upsets me, and her being under a lid to keep her warm means she's distressed with me physically struggling to reach her to comfort her... thankfully her latest blood test shows the figures have dropped off again, so I'm hoping we're past that particular hurdle.
    With the feeding - and no, I'm not justifying myself to ANYONE on this - I started off wanting to breastfeed. Not for some grand ideological principle (I LOATHE the behaviour and attitude of militant breastfeeders), but for the convenience and portability angle of it. I have always had an open mind that I'd take whatever course of action was best for my child - and made sure I have bottles on hand at home, and a lightweight use pump in case that was looking like it was needed. When things went wrong and we ended up with a NNICU preemie - I spent a good amount of time on the breast pump expressing colostrum, but obviously this was never going to be enough to satisfy how the hospital feeds these children - so she was fed first by a glucose drip (treatment begun before I'd even left theatre as her blood sugars were a bit wonky), then by a nasal tube - with a mix of whatever I managed to express, topped up with formula (so slay me on the bonfire now). We've spent the last week trying to get her interested in breastfeeding as well as tube feeding her with a mix of expressed and formula - but I think that realistically, at present, she's just too little to figure it all out (not for a want of trying on both our parts). Last night we finally made the call to give her a teat (the hospital are very keen on preventing nipple confusion - but I made that choice backed with information and research), and she took half the amount they want to feed her from the bottle before she got tired and we fell back on the tube... and she's continued this throughout the day - and I'm not ashamed to admit it, I sobbed with relief at some sense of progress... and then several staff put their necks on the line and admitted privately to me that they felt I'd made the right decision - and do NOT get me started on the wrongs of living in a world where they're unable to say anything and offer advice in response to those kind of questions - if someone had told me 3-4 days ago that it was a possible avenue to explore, that it would offer us and her a route to feeding her free from the nasal tube a bit sooner and potentially shorten the length of our stay here - which I'm finding incredibly traumatic to the point I lie sobbing most evenings - thus reducing the chances of me ending up with PND (and I suspect now probably PTSD in actuality)... then they'd not have been committing any crimes in the grand glory of formula - but an act of compassion toward a mother at absolute breaking point.
    As it is - I'm attempting to up my supply - which isn't happening well because of no sleep and stress... even to just maintain it via pumping in the hope that one-day the option IS open again, but I'm not prepared to even contemplate trying it within the hospital - it will only be something to do when home, in conjunction with expressed bottles until I'm sure her weight gain is secure - I will NOT ever put her health at risk in order to feel better about my own ego about breastfeeding. If I end up with her on formula completely - I'll be sad, yes... but it's a sadness at the fact yet another choice and option was taken from us because of the circumstances involving her birth and the hospital's handling of certain things.
    I hope that clarifies things. Undiwear - please stay off my thread. I don't find your advice helpful - I find it incredibly dangerous to Erin's health and her possible future with her family and your posts to be incredibly distressing to me.
    I realised today just how utterly traumatised I am by the whole thing - I'm going to attempt to type up her birth story in a little while, just as some attempt of catharsis for myself, but on a brief trip out to the hospital foyer today while dad was with her - I walked past the entrance to the delivery suite and promptly started crying. Her entire birth was a catalogue of me being ignored completely, left in pain, and even when the things bothering me were explained perfectly articulately and clearly - with the reasons behind those sources of terror being made clear to the staff "caring" for me... they were ignored... leaving me backed into a corner in a fight or flight situation - then the social services cloud hanging over our head when we should have been celebrating/dealing with the sudden arrival of a premature baby...and yes, I'm very very shocked by it all... plus our hospital's way of dealing with babies making the transition from NNICU to a normal ward has a number of massive, massive flaws in it - meaning I'm basically a long-term inmate on a normal post-natal ward, with all the blood, gore, screaming and interesting residents that entails... and it's utterly utterly gruelling - I haven't slept for over a week - the last two nights I've shared a bay with babies that screamed constantly (just one of those things - babies cry - but being constantly next to one screaming shreds your nerves), parents who had visitors needing to be ejected for fighting, kids running around during visiting time and behaving appallingly... the food is inedible - while I can ask hubby to go get me a sandwich from the shop - it's costing us a small fortune, money we don't really have to spare... so I'm going hungry a lot of the time, plus the feeding schedule they have small-sort on means that I regularly miss meals anyway - and the hospital staff's response to this is to get the domestic staff to just shout at you about it and badger you to go get dinner the second the trolley opens - which you can't do when you're faced with a transition support worker who'll lay into you if feeding times slip at all, and you're mid-tube feed with not enough hands to do that easily anyway!
    So yeah - I'm basically going quietly bonkers, on a massive hormonal comedown anyway, spend most of the time between when hubby goes home and comes back sobbing away quietly in my cubicle - I don't feel safe, I don't feel cared for or supported (especially since one of the support workers... some are utter angels but there's one real bad apple in the bunch... basically told me that now they withdraw the support- my care instructions will be shoved in a file - get on with it)... the whole drawing stomach contents to check the tube's correctly sited freaks me out every single time I have to do it (I can cope with the rest of the proceedure - but they've basically bullied me into doing the part I've repeatedly expressed my discomfort with doing)... and I'm crumbling essentially.

  17. Totally agree. Some people need to keep their opinions to themselves.

    Take care MrF, you have been through such a lot and will need time to process everything.
  18. Chica77

    Chica77 New commenter

    Congratulations on being a mummy!
    Same. This thread was not started for someone to push their views on you at all. I can't understand why they would do that when you didn't ask for BF support. Grrr.
    I don't have experience of having a prem baby (both of mine were stupidly late!) but I was a prem baby myself, born at 36 weeks and after a 2 week stay in hospital I was fine. My husband was born at 32 weeks to a 17 year old mum, and he's turned out ok!
    So sorry you had such a bad experience at hospital and really hope your little girl gains weight soon and they let you home. Hospitals aren't the nicest of places at the best of times, and the maternity ward is a nightmare. I felt like a zombie after 3 nights there.

  19. chocolateheaven

    chocolateheaven New commenter

    I'm so sorry that you've had such a terrible time, and that certain posts on here have been less than helpful. Please make sure that you get some support and help for you in dealing with this, and not just the standard 'new mum' support. It's so easy, as a new mum, to let issues fester and overwhelm us.
    That's what my lo's was like - up and down, so frustrating - just when you think they're past it, they're back under again. My baby hated being blindfolded, became distressed and kept pulling it off. I asked for an alternative, and they gave me a visor for her to lie under. It protects their eyes fully, but it's not on their head, touching them or blinkering them. She settled much better under this, so if (hopefully not, but if) Erin ends up back under the lights, it might be worth asking for a visor instead of the goggles, see if it helps her settle a bit? It's hard enough to see them like that, without having to see them distressed too. Now she's taking more fluids, hopefully that will keep levels down as it's the most important thing.
    With the feeding - Bella (who posted above with her contact details) did exactly what you describe - she basically expressed in hospital and almost lost her supply. She built it up with support, and is still breastfeeding now, at 9 months, alongside formula (unless you've stopped in the last few weeks Bella?). I'm sure that she can offer help and support with how to deal with it, if you decide you want that.
    I have faced the wrath of lactavists for combination feeding - despite the fact that I'm hugely proud to have managed to continue breastfeeding. There is so much ignorance around from people who claim to be well informed, and genuinely believe that they are experts when there is so much that they don't know. Formula was effectively the only choice for my baby, and it kept her alive when I couldn't. It hurt, it still does, but I'm very grateful to live in a world where formula exists. Your darling girl will be happy, healthy and wonderful, however you choose to feed her. SS will not maintain any awareness of you as a family, having dismissed the hospital's claim. I'm sure that they could see just how longed for and how loved Erin is - and how ludicrous it was for the hospital to hold anything that you said in such traumatic circumstances against you. Feed her however works best for you guys in the situation that you're in. She won't be any the worse for it, and the most important thing right now is to get her healthy and home.
    It all sounds horrendous still being in. Hopefully, the improvement in her bilirubin levels and the increased feeding will all lead to an earlier discharge.
    Take care of yourself xxx
  20. bella1981

    bella1981 New commenter

    Sorry to hear you are having such a terrible time. On a more positive note Well done Erin for feeding without her tube. It is a positive step towards her putting on weight and going home :)
    This is true. When expressing I got to the point where I could not keep up with little one and my supply dropped to 20ml a day. The stress of having a baby on nnu really doesn't help with this. I tried to improve this by getting more sleep (easier said than done) drinking and eating well and expressing more regularly. I was also encouraged to express both breasts at the same time. Have the hospital provided you with an electric breast pump? This did help a little but I was also advised by one of the nurses to go to dr and ask for a prescription of domperidom (sp). This is medication for stomach complaints but can have side effect of increased supply and can be prescribed for mothers. This really helped me combined with the steps above. As chocolate heaven said I am still breastfeeding alongside formula feeding now at 9 months. My LO has always been combination fed and it suits her. She has been tube, cup and breastfed too. She then moved on to having a bottle at 8 weeks old. Every baby is different though.

    You really have had a difficult time with your birth and to a point I know how you feel. Right now I'm sure it feels like you will come to terms with it but I assure you that once you get little one on the pain will ease. I have never really written a full birth story as I have gaps that I still cannot fill even now. I spent alot of time asking my partner questions about the first week. Hw long was I in theatre? What did they do with little one? Did you go with her? Where you there when I came out? Who visited her first?... There are many more and I still get very confused about the order of things.
    I felt very guilty that I had not been there for first nappy change or feed and once I was fit enough threw myself into the routine of nnu life. Do you have to do every feed? I know I myself felt I had to and was very sensitive to being asked about what I had done and when by the nurses but after a few days was told to give myself a rest and let them do some of the observations/ feeds. I know instinct is telling you that you should be the one to do everything but you have been through a trauma and need to recover too. Have you been discharged from hospital yet? Could you maybe pop out of the hospital just for an hour or so? Being stuck inside those walls is hard and leaving the building can do you good. I will admit the first few times I did it I also hyperventelated but I was glad I did it just to have a moment of normality. I just told myself that the nurses were babysitting while I went to the shop or home to do some washing. In 6 weeks I went home 2 nights and 1 day but I made sure I left the building and saw the light of day at least every other day even if I was just popping for dinner across the road.

    Well I've waffled on enough for now. Thinking of you and your family xxx

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