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baby needs op after birth.

Discussion in 'Parenting' started by clematis, Apr 13, 2011.

  1. I'm so very sorry to hear your news ladymarm- sorry, again no useful advice but I feel very sad for you. I hope all works out well in the end- babies are tougher than they look. I am sure your OH will be able to get paid compassionate leave; if he goes to his boss asap and lets them know that will probably work in his favour too. Lots of love to all 3 of you x
  2. Ladymarm, I dont really have that much valuable advice to offer you but I did want to offer my support and good wishes to you and your little family.
    One of my friends had a little girl 3 months ago who had a very similar sounding operation. She is still in hospital for an unrealted heart condition (which is minor, but hard to regulate), however the bowel operation was a complete success and she is a beautiful, chubby little girl!
    I cant begin to imagine what you are going through but please be assured that your LO will be given the best care from the hospital staff .
    Take care x
  3. Ladymarm, I was born nearly 30 years ago with my intestines outside my body and I spent most of my first year in Bristol Childrens Hospital. All I can say is that at the time, I ended up with the shortest intestine ever in a baby (only 20% of normal length) and I have gone on to live a normal and happy life, thanks to the amazing gastro surgeons at that hospital. I have just had a baby myself.
    This is obviously a slightly different take on your appeal for information but I really hope that my story gives you hope. It must have been unbelievably hard for my parents, as it will be for you, but you will cope and you and your baby will come out of it stronger and ready to live life to the full.
    Best of luck x
  4. snowcloud

    snowcloud New commenter

    I had experience of neonatal. Me and my husband were in for quite a while.
    From my experience I would try and say that the staff in neonatal care are absolutley brilliant, like angels. Things might not go as you originally planned but still look on it as positively as you can as everybodies experience is different. For me it was a shock and I think I found that difficult and upsetting as I just was not expecting it at all so at least a positive thing is you know it is going to happen so you can try and get your head around it.
    I don't know if it is possible but it may help if you are able to visit the neonatal unit your baby will go to so that you can prepare yourself for the environment your baby will be in. I think it shocked me at first but I soon realised it was the best place for him and that the team were so good. I wish I could have known it was going to happen and visited so that I was prepared.
    Take plenty of comfortable clothes and light layers as it can be so warm in the unit. Take food - frozen meals (ours had a freezer and fridge for parents staying and a microwave)/ crisps/ snacks that wont go off.
    Ask lots of questions and join in with doing as much as you can if you are able to so you feel as involved as you can be. Our team had a little record book where they wrote progress reports on what LO was doing or had had done and write in it yourself too so that you re part of it.
    Hope this helps a little bit, lots of love xxx
  5. Hi Ladymarm
    Not personal experience as such, but friends of our had a baby at 23wks4days and he is being looked after at Bristol Childrens Hospital.
    The hospital itself is fairly modern, and has good facilities for parents staying with their babies (some paid for by charitable donations after huge fundraising efforts) so this aspect may be easier than hospitals elsewhere.
    My friends baby has been there a long time (as you can imagine with the amount premature he was), and has had to have at least 3 operations. The parents have felt very well-supported by the staff who have always been very honest with them. I think this was a bit of a shock to them at first (they come from another country originally and doctors attitudes are different) - but they came to realise that they would not be given false hope, but also not made to feel it was hopeless when it wasn't.
    They have also made friends with some of the other parents, who have also helped them feel they are not alone.
    Their baby is doing well, and will come home soon (probably this month), so they are spending time in a special unit where they are being taught how to look after him like they will at home (he will still be on oxygen etc.).
    It sounds like your baby will not need such a high level of support, but I'm hoping this will reassure that BCH is well set up for anything, and do everything they can to make it as easy as possible for evryone involved.
    I know lots of people worry about bonding with the baby too, but BCH are very keen to establish this, and even in the very early stages they were encouraged to hold the baby out of the incubator (skin to skin under their T-Shirts/tops often, so you and OH may want loose fitting tops).
    Sorry if I've rambled a bit.
    Good luck.
  6. Thank you so much for your support and useful stories too.
    We haven't slept much but somehow i do feel more positive today. i will go into hosp for my steroids this morn and my partner is not able to face the questions at work yet so we'll stay together.we are going to go and buy and fit a carseat today and get a bit prepared for an early birth although we know we won't be taking our baby out in th e car for a while. it is sometihng to hope for.
    He has said that he is frightened he won't love a baby with Down's. This is his biggest fear. i don't believe this will be true but it will be hard to get through at first and is so painful to hear. We may not have to face this-we will find out in next two weeks when amnio results come in. i feel terribly guilty as a teacher that i am having these thoughts about life with a child with learning difficulties but i guess i have watched so many parents have to fight and struggle over the years for their children to have a 'normal' life.
    It is dawning on me that down's is forever but a stomach op- all being well- may be just a horrible memory in a few years time. We have decided to find out the baby's sex- something we have never wanted to do before and refused at every opportunity! We think it might help us bond with our baby and give us a lovely distraction to choose names for our child.
    Thank you again. You have given me some realistic hope and i thinkI'll come back to this thread and keep you all posted. it might help someone else one day x
  7. I'm pleased you're feeling more positive today.
    I think that's very brave of your OH to admit his fears of not loving a Downs baby. I guess people think they should 'know' they will love their child, but more often than not, when you have the potential to not have a 'normal' child, it puts a whole different spin on it. What I'm basically saying in that waffle is that it is so easy to pretend that you will automatically love the child, but it takes greater courage from your OH to admit that he is worried about not loving it. That said, I'm sure he will love it regardless.
    I think that's a great idea about finding out the sex. I too didn't find it out, but given your situation, I believe it will allow you to bond straightaway - and think of LO as a 'he' or 'she' rather than 'it'.
    Good luck with the amnio results. We're all thinking of you.
  8. thanks lily you have really helped me today and yesterday x
  9. snowcloud

    snowcloud New commenter

    I think it will be lovely to find out now whether your expecting a little baby girl or boy, and choosing names will bring back all the positive excitement. Maybe then you can choose a really special toy or gift to give your precious baby xx
  10. Glad you are both feeling a bit better today. I've sent you a message on here but not sure if it's worked or not :)
  11. hello again.
    Thanks for your thoughtful kind posts it has really helped.
    Lilypot and anyone else who has had a prem baby- what should i do about clothes? i have broken my heart looking at prem clothes online today.I don't feel ready but i know i must get ready. Did your family dash out to buy tiny clothes or did the hospital have some for the duration of your baby's stay? also nappies- should i buy some tiny ones? Where from? or again do hospital provide them? I am guessing our little one will still get wet nappies as kidneys all ok, just bowel won't be working for a few days/weeks. I may be lucky and not go into labour for a few weeks, it is all very uncertain. It was awful at Tesco today, all these well meaning ladies kept saying 'Oo not long for you now'. i'm due in 10 weeks but am very big- all fluid, baby is still 3lb.
    Thanks all x
  12. Mu OH had to dash out to the shops when I was in labour (so consequently spent the first 3 hours of labour on my own!).
    The hospital provided clothes for LO until such time that we had some we could bring in (the nurses then put a sign on the tray thing saying they were her own clothes so they didn't get put in with the hospital washing). Then, we could bring in clothes for her and they were stored below her tray thing.
    Nappies were also provided by the hospital. However, if you wanted to bring some in, the tiniest I dound were the Pampers micro which I could only find in Boots.
    I think Tesco did do some tiny tiny clothes, but generally, most things will probably be too big for him/her.
    Cardigans were always on our LO so you might want to take some of those - however, our neonatal unit had a stack of knitwear which you could buy (50p to a £1) which was good.
    I know it must be hard looking at prem baby clothes but just try to imagine your tiny, cute little baby in them. I'm sure he/she will grow to be a strong, healthy little baby!
    x x
  13. thanks lily- so helpful!
    We have just had a surprise phonecall from hospital with first 'rapid result' from amniocentesis. The results were good they havent found chromosonal defects so far. We have to wait 2 weeks for full report but according to midwife the second results should back up these rapid results and it is very rare for them to change. We are almost able to breathe again. maybe one hurdle has been cleared already. Hugely emotional and so relieved we won't have to wait til monday for results as we expected. This weekend suddenly seems a lot brighter. Thanks for support xx
  14. We're all rooting for you and your LO!
  15. Good news about the chromosomal tests- must be a relief but must be so scary waiting and not knowing. You have a few more days behind you- so every day is a bonus.

    It will be hard watching your baby go through an op- but he/she will be in the best possible care and it is an operation which has been performed many times over.
  16. whistle4it

    whistle4it New commenter

    I feel for you LM. I REALLY do. You poor, poor thing. My situation was different in that I found out about problems at 20 week scan, and spent the rest of my pregnancy wondering if my son would live, as we tend to do.
    You will be in the BEST hands, and as this is planned, there will be much less room for panic. My cousins baby had this procedure, and it is more common than you think. You must try to stay strong and know that it won't be easy, but that you can get through it. The light at the end of the tunnel will be your baby getting better and coming home. :) I second Bunique's post...you and OH will need to be there for each other throughout if at all possible.
    Sending big strong hugs xxxx
  17. Thank you ladies so very much. reading your posts helps. thank you whistle4it for your personal story. I know you are right and this week has already taught us that- we have clung together and barely been out of each others sight. I have lost count of the times we have said that we can't do it alone, it has to be both of us with our families behind us too. Seeing my beautiful strong man sobbing has been hard to bear at times but i think we must be honest about our fears. And I only love him more. We just can't wait to bring our baby home!
    Best wishes to you all and thanks xxx
  18. That must have been devastating Smidget - what a shock. How were the CVS results - have you had your LO?
  19. CVS came back normal after 2 weeks wait, and wanted to know sex so knew 100% he was a boy from 14 weeks! He is now a happy, healthy, squealing 16 month old! x
  20. Smidget- that's a lovely story to share- thanks!
    Still waiting nervously on final amnio results but trying to remember rapid results were good. Have gone into overdrive on the net to 'prepare'- all the things i wasn't planning to buy for weeks like elctric breast pump, TENS, blackout blinds, steriliser, car seat- phew! Been cooking up meals for the freezer and packed hospital bag.strangely feel better for all this, as if i have a smidgen of control over events!
    Seeing consultant for growth scan again next week and hoping baby will have put on another 1/2 lb or so and 31 weeks now so everyday counts for something i guess.
    Thanks for support ladies. it helps to write it down.

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