How did you stay sane?

Hi, I need tips as I'm starting to crack.
I had my twins at 32 weeks 2 weeks ago tomorrow. Ellie was 3lb 14 and is now 3lb 10 and on 33mls per hour, in a cot and doing well. Liam was 4lb and is now 3lb 9 and not doing quite as well - still in incubator, not digesting his feeds well, has canular to deliver nutrients through a drip, etc.
I guess they're both doing well compared to 2 weeks ago when they were on CPAP, janudice lamps, both on drips, etc but I think because Ellie's doing so well it makes it seem like Liam isn't.
The NeoNatal staff are great, but they're only there to keep the babies alive and well, they're not there to give them comfort, and the thing that's driving me most insane is Liam keeps having to have new canulars because the previous one tissues, and it causes him pain to have them re-inserted, and he hates it when they're in place. Also because of the drip they keep having to take blood and he's normally a contented chap but he screams with pain when they do it.
I'm having to rely on people giving me lifts to the hospital because of my c-section, a taxi would be a fortune and the public transport would take forever. I feel calm when I'm there, but hate it so much when I'm back home without my babies.
How did you cope?


  • Hi

    My little girl was born at 34 weeks weighing 4lb 6. she is six weeks old now and weighs 5lb 15, she was in hospital for 12 days we were very lucky - i found it very hard when she was in special care as they told us to aim for her due date before she could come home but all of a sudden she turned a corner and were told on the saturday she could come home on the sunday. I too had to rely on lifts and really struggled after c section but dont feel guilty if you cant be at the hospital all the time, we tried to go twice a day for two feeds but you need to rest and get better before they come home as it comes around so quick.

  • Hi hun, first of all ((((BIG HUGS)))) tis hard watching your lo's go through pain when all you want them to do is to thrive so you can have them home!

    My daughter was born at 28 weeks gestation weighing 2lbs 7oz's 14weeks ago by emergency c section, and she was in SCBU for 8 weeks exactly... On a ventilator for her first 23hrs then CPAP for 22days and nasal oxygen for 16 days. She was always jaundice so needed to be under the lamps loads in the beginning then she got a long line infection in her leg which was horrible to see her go through and was what caused her need for o2... She spent nearly a month in an incubator and i thought we would never get rid of the many drips she was on but honestly hun hand on heart it does get better and eventually one by one they weren't needed anymore! Her main issue was feeding in the last few weeks of her stay it felt like we were never going to get her home as it was too easy for her to get her feed from her NG tube as opposed tohaving to work for it but with perseverance it paid off and exactly 8weeks after she was born we were on our way home with her weighing 5lbs 15oz's!

    Totally agree with you about SC staff, they do a wonderful job but as you say they dont provide the comfort factor for the babies, i found the easiest way to deal with this was to see that as my role, something only me and my husband could provide... We quickly got into a routine that worked for us.. A would go up to see her before work in the morning and to have some father daughter bonding time whilst i had a long lie (make sure you rest whilst you still have the time) and then would go up at midday or just after lunch and spend all afternoon with her, giving her much needed skin to skin contact (at first we could only manage 20mins but it gradually became longer) it helps to calm and soothe her even now. Then A would pick me up and we would munch a quick bite and go back to SCBU till 10ish every night. Are you planning on bf the twins? Amelia didn't take well to the breast so i started expressing my milk which helped me when i was home to not feel so redundant as a mum! xxx
  • Hi

    Can i ask Hodgeydorris - i remember some of your posts did you have pre-eclamisia? how has your little girls development been? do you think she is behind a baby born at full weeks, my little girl is six weeks and sleeps most of day and is only awake sometimes an hour after feed and hasnt smiled yet.

    I also tired to breastfeed and she wouldnt take to it so i expressed as well which was nice to go in and give her something of mine, she took to the bottle much better - they said if i had tried to breastfeed she would have been in longer.
  • Thank you for your replies, I read them last night before bed and they gave me comfort.
    We've had good news overnight. Liam is on full feeds! He's started to be able to digest them, and when his canular tissued last night they decided not to re-insert. He was just under the treatment line again for jaundice but I thought he was looking pretty yellow again so I asked for him to be given more treatment to bring the level down further. No point him progressing in some areas then having a backwards step.

    I'm trying to b/f Ellie, I've expressed from day one, and she's taken well to a cup but we're finding b/f hard. I have inverted nipples which I think is an issue (the staff don't seem to think it is) cos it's got to make it harder for her, plus she hasn't got the whole suck, swallow, breathe thing mastered yet. I feel sure at the moment if I said to put her on a bottle she'd been home in days. That would be good, but then also a nightmare to have to take her in with me every day until Liam's well enough to come home so I'm going to persevere a little longer on breastfeeding, but will use a bottle in a few days if it's not happening.

    thank you for your replies and I'm so glad to learn about your success stories, Good luck to you all
  • Franny86... Yup i had severe pre-eclampsia, have never felt so ill and out of control in my life image
    In terms of her development she is ahead on somethings such as rolling over she started doing it at 10weeks and pushes herself up when on her front!
    When we first brought her home she slept pretty much all the time apart from waking to feed and the odd hour during the evening but she has grown out of that now and really alert throughtout most of the day image
    We haven't had consistant smiles as yet but a few so far so we are hoping she will do more and more as the weeks go on, dr's say she should be babbling in the next few weeks but i think it will take her a while longer and am not overly concerned unless they say it's an issue!

    She is 14 weeks old now and she seems huge to us at 7lbs 5oz's but wouldn't have her any other way! x
  • Hi LEC I think you were in August werent you? I also had my little girl very premature at 31+4. We spent just over 4 weeks in NNU and bought her home on Monday this week. She was 3 pound 8 born and now weighs 4 pound 6. Your story sounds so familiar - all the drips, milestones you reach and the heartache of leaving every evening. I really hope you have your twins home soon. The only advice I can give you is talk lots. My husband and I spent so long talking about our feelings but also planning the future and even booked a little Center Parcs break for us all in January as it gave us something to focus on. Keep us posted and I'll try and find time to pop on here xx
  • Hi Becky,
    thanks for your message, I hope you're doing OK and your little girl is progressing well. Ellie's been home since 18 July and Liam 21 July, it's so good to have them home.
    i'm still not relaxed and enjoying them as much as I should because I'm nervous about not doing the right thing and making them poorly because of their fragility, do you feel the same or are you able to treat her normally?
    It was strange because Ellie was discharged before Liam because they thought he'd be in quite a bit longer than her, his iron was very low and he had to have a blood transfusion. But then they had 4 new deliveries and they suddenly said we could take Liam home with medicines and take him in for a blood test in 2 weeks. The day after he came home we had to go back to hospital as he wasn't eating well, but he's doing OK now.

    I don't know if I can just treat them normally, as they still shouldn't actually be here.

    How are you feeding your little one? I'm still expressing but have started to introduce Nutriprem2, just a quarter of that to a quarter of my milk. I'd still really like to breastfeed but I know that it's not going to happen. It makes me V sad because as well as not having a normal birth or being able to spend that precious time with them in their first moments, or then the first weeks I'm now not being able to have that closeness of feeding them either, But I had to make the choice of bottlfeeding my milk to get them home sooner.

    We don't know what we're doing with bottlefeeding, as in, it takes them over an hour to have a feed sometimes, or they'll have a little and leave the rest, when do we throw it away? I can find no proper guidance on sterilising, feeds etc and it's driving me mad.

    sorry I'm just pouring out my sadness and stress, I'll sign off now, but thank you for your message to me and all the best to you. I really like the idea of booking a mini break to have something to focus on that's happy. I may well suggest that my husband,

    Nanight, Love L xxx
  • Hiya
    Thought I'd check back and see if you'd posted. I'm so glad that you have them home now - must be especially hard to take one home and not the other. We went out for the first time today as I was going to go crazy if I didnt get some freshair after over a month spending every waking hour in the hospital. So we went for a walk to the park but she had so many layers on she looked like she was going to the north pole!!! She did fine though, I know what you mean about being so scared. I cant stop checking that she is breathing and take her temperature so regularly! The health visitor has been calling regulary and says "dont worry you'll get more confident" but I dont think I will!!! I'm hoping once she is a bit bigger I'll feel less scared of her catching something. I'm going to try a few more trips out next week.
    I have ended up giving her formula. My milk totally driecd up whilst she was still in hospital but I feel pleased she had my milk for 4 weeks. So now she is having Aptamil and is taking it well - the hospital weaned her onto it before discharge. They were quite good were we are and showed us how to make up a feed before we left. Which bits arent you sure about cus I'm more than happy to tell you what they told us if you let me know.
    Take care and no doubt chat soon
  • well done to you for giving her your milk for 4 weeks - any amount of time is beneficial they say.
    The thing I'm stuck with is about the hygiene of things like the teat. I've gone from microwave sterilising to milton (cold water) so that the items in the solution are sterile for 24 hours, rather than me opening the microwave steriliser then being stuck having to use it or re-microwave.
    I make up a couple of bottles of EBM and put them in the fridge. My thinking is that it's in a sterile bottle so it's fine for the same storage as my milk would be when I've just expressed it. They said in NeoNatal that EBM is OK at room temp for up to 4 hours in sealed bottle, 2 if it'd been warmed. Nutriprem has to be discarded within 1 hour once the feed has started. So over the last 12 hours my approach has been to take the EBM out of the fridge and giving them that, then topping up with formula if they want more. before this new approach I'd mix the formula and EBM but then it'd have to be used within an hour or wasted. I don't mind wasting the Nutriprem but I really hate wasting my milk. Neither of the twins are consistent with how much they have or when so it's impossible to predict and make up the feeds ready, and I don't like them to have it straight from the fridge as I believe it's harsher on their tummies and harder to digest.
    If a feed of EBM only had started I think it has to be discarded within an hour because of the hygiene of the teat, is that right? My boy especially can take an hour or more over a 70ml feed...
    it's not so hard in the day but I'm finding it wearing at night. Any tips or advice at all would be very much appreciated.

    Also, have you got your little one into any sort of routine? Mine seem to sleep all day and eat all night. I don't want to disturb them when sleeping, but maybe I've got to? or I'm just going to have to sleep all day too??

    L x x x
  • Its all so difficult isnt it. Our hospital showed us how to do feeds but were also quite realistic about it. Basically I sterlise all of her bottles in the microwave, make up all her feeds in the morning and then put them in the fridge. They actually advise you to do one at a time but the lady at NNU said on the side that this is what she did for all of her children and they are all fine. Then I take one out of the fridge about half an hour before she is due a feed but she doesnt have to have it warmed. At night time I take up a feed in advance and keep it out for bout 2 hours before the next one. I didnt know about the 1 hour thing but I'm tryin not to worry as she's been fine so far. I think sometimes the guidelines are just that and they are a bit neurotic. I know we have to be careful with our little ones immune systems but the hospital said to us that actually she needs to build up one and you cant wrap her in cotton wool. I'm hoping this carries on being ok cus she's been fine so far.
    Nope not got her in a routine. To be honest I'm just taking things day by day at the moment. Some days she has a restless night and some nights we have to wake her up for a feed. I know how you feel about the feedin thing though - it takes her a good 45 minutes to take a 50ml bottle and I get so worried if she only takes 20 ml. But I saw the health visitor today and she said that I'm doing fine just going with her cues. Just trying to feed every 3 hours but if she doesnt want it dont force her cus she'll let you know when she is hungry. It seems to be working as she is putting on weight. I'm also trying to not worry about bad habits - I hate to see her cry so if she wants one I give her a cuddle - I think with a full term baby I'd be stricter but I just think she should still be safe in my tummy so if she wants to be cuddled on my chest for an hour then so be it!
    Have you taken your little ones out yet? Again I was a bit cautious - especially as she is a bit sniffly at the moment - but she said nope just go ahead and do it. The fresh air will do her good!
    So its all so hard isnt it - I'm sure we are doing a great job and I dont care what anyone says - being a mommy to a prem baby is definately hard!!
    Take care
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