Premature baby support thread

[michelle79]

Hi looey
I'm not sure if you read my post on your other post but I think the one thing you will need is your own hospital bag things, ie. the mat pads for after giving birth, maybe you could pack your hospital bag so you are at least prepared as there might not be much time when ds decides to make his appearance. As my ds had low fluid levels I did read quite a lot about it but that was 3yrs ago but I think that if ds is still growing then that is a good sign. Once ds is born the hospital should provide everything, obviously the less premature the better and a 27weeker is much different from a 30+wker with regards to their breathing. Most early prems start on a ventilator, mine were on for 4hrs then went onto cpap which helps breathing as the lungs don't collapse completely so they don't h ave to work as hard to reinflate them. Ds will be cocooned in a blanket to mimick the womb and give him boundaries as they are not supposed to be exposed to gravity yet. Time spend on cpap is very variable. If you chose to express I think most neonatal units lend out quality breast pumps and ours provided the little bottle for it too. The hospital will provide the nappies and formula if you choose that route. Ours had a stash of clothes for when they were well enough to be dressed. There is no real point buying lots of prem clothes cos when they finally put on weight they do it quite quickly. Good shops for prem clothes are mothercare and next but they are quite dear. Tesco were quite good but found the asda ones quite big for the weight. Like all newborns you will need a car seat to take ds home whenever that may be. It might be an idea to think abo.ut you pram or travel system for this reason, you dont have to buy it. The likes of kiddicare deliver really quickly. Once home you will need the pram and a moses basket, bottles if you need them and a Steriliser. i would suggest just buying dr browns as you will probably end up on them in the end but others may disagree, maybe just buy 2 to see if they agree.things like cots and toys can be bought later. Im not sure if ive really answered your questions but please feel free to ask more.
Mchelle x

[Platinum]

Hi Looey

I' ve also been following your other thread, and hoping for good news at every stage. Michelle has offered some great advice.

I didn't have a bag or anything, as I just popped in to the delivery suite to be checked over as I had some bleeding, and fast forward a few hours and I haemorrhaged and Elizabeth was born at 29+3 by emergency c-section. This was in the middle of the night, so the following morning DH popped home and got whatever I needed.

As for the baby, the earlier he/she arrives the less he/she will need for a while. Our neonatal unit only provided the first couple of nappies, until we were able to send someone out to the shop with a shopping list specified by neonatal, which was things like nappies, nappy sacks, olive oil, sudocrem, vaseline, cotton wool balls. She didn't wear clothes for a few days as the incubator is very warm and they don't like anything more than necessary on their delicate skin. The unit had clothes that they used, but we soon preferred to get our own - clothes from Tesco, Boots etc weren't well enough designed for very tiny babies, as at least one arm, leg and head were in some way attached to tubes/wires for a few weeks! Mothercare did a tiny vest with velcro which the staff at NNU loved, and I trawled the internet and bought a few little wrap-around garments. Only once the baby is out of the incubator are clothes really necessary, but it was a lovely emotional moment when I arrived in the unit when my daughter was a few days old, to see her dressed for the first time in a lovely delicate cotton dress!

Our NNU provided formula milk, but only provided donated breast milk for the very sickest babies (which my daughter apparently wasn't). I expressed religiously but didn't manage to get my supply very good, so by the time we left NNU she was on half formula. You might like to think about whether you wish to express milk. You will probably be loaned a breast pump by the unit.

If you do end up bottle feeding, you may find that your neonatal unit uses a certain type. Ours preferred Nuk teats as they felt they were accepted best by the very tiny babies, and are quite good if babies are transitioning between bottle and breast. Therefore we went with Nuk as Elizabeth was used to those teats. But I would wait and see what happens bfore rushing out and buying bottles, sterilisers etc. Of course, if your baby is very premature, he/she will be tube fed for some time.

The NNU will encourage you to do what you can for your baby - cleaning face, changing nappies, feeding (even by tube) etc. It's all part of the bonding process, and we got a lot of support. I even bathed her a couple of times on the unit. It meant that by the time we took her home, we felt like we knew what we were doing!

We made some decisions before my daughter was born, but ended up changing what we did because she was so tiny. For example, we found that we had to buy a moses basket because she didn't like her crib - probably because of the open bars and air flow around her, which was different to the 'goldfish bowl' style cots in the neonatal unit. We just put the moses basket in her crib until she was bigger and could hold her temperature better and was happy in the crib. Also, you might want to consider things like the carrycot attachment for whatever buggy you choose, even if you previously weren't going to bother.

But to be honest, you can wait for all of this. The most important thing is to stay healthy and relaxed and keep cooking that ultra-precious baby for a bit longer if you can.

If you want more info about what it's like having a premature baby in intensive care etc. let us know - I did write a very detailed summary of our time on the unit which I'm happy to share (but won't force upon anyone as it is very long!).

Or any other questions - as Michelle says, we're happy to help in whatver way we can.

Platinum x

[looey82]

Hi girls,

I have a couple of quick questions for you all if that's ok.

Firstly to do with expressing milk. I've read all the leaflets etc and most say to express at least 8 times a day at first. I think I'm doing well in amounts but really don't know if it's enough overall. I'm only expressing 5-6 times a day now and I'm getting about 750ml in total per day. Matthew's only drinking a fraction of that but of course I know that I need to be getting a good long term supply. Does 750ml sound enough for now and if I'm getting that from 5 expresses do you think I need to do it any more frequently? TBH any more than that and it's a bit of a chore! I know that sounds bad but I am getting myself out of bed once in the night and making sure I never leave it more than 6 hours between expressing like they say.

The other thing was just how you all found a balance between being in hospital and at home. I live about a 30 minute drive from the hospital and am still reliant on lifts at the moment. I'm feeling a bit confused and weird about how I feel and what I want to do. Having not seen Matthew at all for almost 3 days due to a sick bug, it brought home to me how I don't even need to be there. Made me feel a bit surplus to requirements! There's enough milk at the hospital to last weeks so I'm not even needed to top that up. Then since then I've stayed most of the day 10:30-5 and so by the time I've got home and had tea, I'm shattered and not had time to catch up on any jobs or chores. (I haven't done any housework since the first week in June due to all the problems I had and my mum/DH just kept on top of the basic chores).
Yesterday I had the health visitor call by at 11:30 so I didn't go to the hospital until the afternoon. That meant I had the morning at home and got some washing and ironing done and cleaned the bathroom etc. It actually made me feel pretty good- like I was some use and had done something productive. I still was able to visit in the afternoon and do his full cares and get a cuddle so didn't really miss out on anything. At the moment he just wants to sleep pretty much all the time anyway. Apart from being awake during his cares and fleetingly every now and then, he's just asleep all the time at the moment so will be unaware I'm just sat next to him staring at him!
But then I feel a bit guilty and a bit crap to not be there with him more. I feel like as his mum I should be sat with him and not just getting on with my life at home. obviously I am trying to prepare the house for him coming home and I know I need to be physically fit and well for him too but it's that guilt that I "should" be there or that it seems uncaring for a mum to leave her tiny baby in hospital on his own.
Basically did you find it hard to strike the right balance and how much time did you spend with your baby each day?

Gosh this is all a real mind blower isn't it?!! It's tough because it's so strange and unnatural. xxx

[Yvette75]

Looey,

Just crashing to say that I expressed for Emily and Christopher who weren't prem (born at 37/38 weeks). With Emily I expressed until she was 12 months old and the most milk that she ever took was 25oz per day which equates to 750ml and she was a term baby, 6lb 4oz at birth and only took 25oz per day from month 4 to about month 8 so I would say that as you are building up a stock now what you are expressing will probably be fine. I expressed at 8am, 11am, 2pm, 4.30pm, 8pm and 10.30pm once she slept through the night and a middle of then night express at 2-3am when she woke in the night but I dropped that one when she was 10 weeks old and started sleeping through. My supply remained constant during the time I expressed.

HTH,

Yvette

[michelle79]

Hi
Sorry for the late reply as my DD had an operation so didn't have time. Re: expressing. I think i did every 3-4 hours during the day and once at night. Once my supply came in i would express 150-180ml each time (not sure if body automatically produces more for twins). I expressed for 7 weeks and to be honest it really was a chore by that point and i'd slip to 5 hours inbetween. Is Matthew still just on EBM? What weight is he now? Is he still on CPAP or ventilator? Many prems expend alot of energy just breathing so sometimes the EBM isn't enough for them and they add a fortifier to increase the calories (mine both had this). It took an age for us to get to 3lb but once we did it went on quicker. Do you think you will try to breast feed when he comes home or give EBM? While mine were in NNU i saw alot of people come and go and saw that the ones who bottle fed went home sooner. I tried once to BF Daniel with a nipple shied and it went ok but he was so small, each time i went in to try it, they would say there had been a problem with his temperature or something and wouldn't let me take him out so in the end he was medically fit and just needed to start feeding. I did alot of soul searching and decided to give up on BF. Daniel started on the bottles and was home a few days later after rooming in. He was 4lb 6oz and i think he would have really struggled to BF anyway. As for Katie she was still on oxygen when she came home so would never have managed it so i feel i did the right thing. However I do know someone who fully BF their 24 weeker so it is possible.
We are lucky and only live 10-15min from the hosptial and i also work there so can park easily most of the time with my pass. There was another woman whose DD was born the same day as mine and she used to arrive and stay all day with her DD, she used to cry alot and was a bit unhinged towards the end (she was a midwife by profession!) so i'm not sure if spending all that time there did her any good. When mine were in NNU it was temporarily on a children's ward while a new unit was being build so there were no separate rooms, therefore when the morning ward round was on as they couldn't provide confidentiality so no parents were allowed in so we didn't used to go in in the morning. I would have a bit of a lie in then straight away ring the unit and express. We would go in after lunch and spend all afternoon there, go home for tea and then go back for a couple of hours in the evening, then i would phone to check on them before i went to sleep. When daniel came home we each went in once to katie (separately whilst the other had Daniel) and we felt so guilty we were seeing so little of her. The thing is they won't remember it and you will have plenty of time to really bond once he gets home. I can't remember have you held him yet? Kangaroo care is really good for them. We used to sit there and hold them in the containment position with one hand on head and the other on back or tummy without moving as they are too sensitive for stroking. We used to do this while they were sleeping and then do there cares and feeds. One of my now best friends had another little toddler at home and lived 40 mins from the hopsital and were only able to come once a day for a few hours. No-one will judge you what ever you do, you do need rest and time to recover also.
Michelle x

[Platinum]

Hi Looey

Re. expressing, I was rubbish – my milk didn’t really come in at all so the most I ever got per day was about 150ml. However, a friend who didn’t have a prem but had a baby who didn’t take to the breast expressed for six months. By six months she was expressing only once per day but getting a litre of milk, which was just right for her daughter. However, she was a big baby and a guzzler – I think if you are getting 750ml you are doing brilliantly. As you will have so much frozen milk I can’t imagine you will run out as you can top it up once Matthew is taking full feeds and is much bigger. Don’t beat yourself up about the number of times etc – if you carry on getting 750ml per day but you’re able to gradually reduce the number of expressions, that would be amazing. I guess just take it a day at a time. Sorry, don’t know why I am offering advice, as I expressed 8-9 times per day for weeks with little effect so I am not qualified to comment really!

As for how long to spend in the hospital each day, I don’t think there’s a right answer. Our hospital was about ½ an hour’s drive away, but very close to DH’s work. His work let him do half days for the first week (we saved up the fortnight of paternity leave for once E came home!). So he would drop me off in the morning, and come and join me for the afternoon. We’d go home at dinner time and sometimes come back in in the evening. Week 2 onwards I’d be there on my own all day, and then DH would come in after work and we’d stay for a couple more hours before going home. So I was there pretty much all day from 8am. But I didn’t have a choice really, as I couldn’t drive after the c-section, and it would have been a nightmare to get there on buses.

I got the impression that the nurses thought I was mad, being there so much of the time – I was there much more than any other parent. I just felt like I should be there, as that was where my daughter was, and it was my job as her mummy to be with her as much as possible. However, I was very tired, recovering from the c-section and anaemia due to the haemorrhage that caused her premature birth. I would doze off in the chair, and one nurse got me access to an old family suite so I could have a snooze if I wanted to (I never did!). I didn’t find it boring being there at all – I was expressing every 3 hours, which probably took 45 mins in total, plus doing her cares, and later on putting her to the breast as well, and occasionally bathing her, writing notes in my little green book etc. The only day I didn’t go in was the day before she was being discharged – I had my 6 week doctor’s check, and wanted to get all her things sorted and do last-minute shopping for essentials before she came home.

If I were to have my time again, I wouldn’t go in so much! That sounds really bad, but actually I was very very tired and should have taken it easy occasionally. The challenge is that in the early days/weeks it was scary as E was of course small and occasionally struggling – and it was always in the back of our minds that something bad might happen and we wouldn’t be there. And later on, with trying (and failing) to establish breastfeeding, I needed to be there as much as possible, and also as E became more alert, I wanted to be there for her.

I would go with your feelings – it sounds like you benefitted from a bit more time at home, and there’s nothing wrong with that. If you had another child you wouldn’t be in there half so much. It will be busy enough when Matthew comes home – try not to feel guilty if you choose to spend part of your days doing other things (or, best of all, nothing!).

I hope you’re healing well and Matthew is still making nice progress. Thinking of you – it brought all my memories back – as you can tell from the very long post – sorry!

Platinum x

[looey82]

Hi girls,
I've been away a long while so hope you and your LOs are well. Platinum and Michelle, thank you for your advice. I'm sorry I didnt reply but I did read your posts and found them very helpful. I've finally got my evenings back at long last so it's lovely to get back on here and be able to chat. To be honest it was nice to have a break for a while after being on here for so long ttc.
I'm after some advice about switching to cows milk. Matthew is 1 in August but will only be 9 months corrected. I've exclusively breastfed up until now (Matthew now has water and some diluted fruit juice but he's never had formula iygwim) and had planned on carrying on until his corrected first birthday. I have to stop early as I have had a flare up of my connective tissue disease and my consultant put me on some medication which passes through breastmilk and matthew had an allergic reaction. I stops the medication so I could carry on breastfeeding but have been advised by doctors that for my own health it would be best to stop so I can restart my meds.
Anyway, Bliss guidelines say introduce cows milk from 15-18 months but my HV says I could switch straight to cows milk as long as I give Matthew supplements of iron and vitamins. I'm unsure what to do. If I'm honest id rather not start with formula after all this time and it'll be more expensive! But obviously will give it if it's best to. What do you guys think. Correcting age can get confusing with diet I think because it's about the only thing you do according to actual age
thanks xx

[Constance]

There's a whole generation of adults who were brought up on cow's milk as babies and they are perfectly ok, so I believe it is ok to give them cow's milk at 9 months - plus the vitamins - the combination should be as good as formula. He's had a year of breastmilk as well, so he's really lucky. Good luck, x x x

[michelle79]

Hi
Well I'm not really sure what to advise. We had problems with weight gain and were still on the premature formula til about 16mths for the extra calories and then we moved onto a follow on milk for a bit for the bottle at least. I think you've done amazing managing to bf Matthew but not sure why you are anti formula except for the cost. Do you stil have the vits and iron from the consultant? Formula has it all in already and would be a good stop gap til he's one corrected. However what has happened in previous generations never did them any harm! I don't think there's really a right or wrong answer.x

[alison86]

Hi we were advised no cows milk in bottles till 12 months corrected due to something in cows milk that can not be broken down by the liver until that point. Its fine to cook with tho. Well done getting this far with the breastfeeding, my milk never came in enough so had to give up expressing after about 8 weeks. xx

[Platinum]

Apologies for only seeing this now - and I'm sure you've already made a decision! We kept Elizabeth on formula until she had her development check at 1 year corrected age, at which point they said she was fine to go onto cow's milk. We then opted for organic cow's milk as the stuff that non organically fed cows are fed can increase the amount of mucous (like us eating a lot of wheat / dairy) and the mucous goes into the milk, making it harder to digest. Well, someone told me that anyway, so we stayed with organic until Elizabeth was 2.

I would agree with Michelle that there's no need to be too anti-formula - obviously it's not as good as breastmilk but it's a very close second!

So pleased that Matthew is doing so well x

[Sillymoo]

Hello,

Quick question. Did you find that as your LO(s) were in scbu that you got 'lost' in the midwifery system? I only had my c sec scar checked once and that was cos I went to the postnatal ward. It's over 4 weeks post delivery now and I haven't heard from anyone, should I have done?

When I had DD1 I saw the MWs lots checking her and me and then they took my pregnancy folder away and went into general health visitor liaison. I feel kinda lost!

[looey82]

Hi Sillymoo,
I definitely felt like I'd fallen out of the system and mentioned this to someone. They told me to book a GP appointment to get checked over 6 weeks post caesarian, which I did. It was only a quick check but felt better for going just so I knew there wasn't anything missed. I had to hand my notes back to my midwife too so just dropped them into the health centre.
I don't want to pester you because I know I've already pmed you but how are you coping? Are you getting support from someone? Perhaps you don't want any (or not at the moment) but touching base with the GP might not be a bad idea anyway. I'll say no more as perhaps you don't want to discuss it but you're still very much in my thoughts. Xxx

[michelle79]

Hi
Im afraid I cant answer your question as I didnt have a c section but I was seen by my health visitor quite early on to check for pnd, do you have one?. I am so sorry to hear about the loss of your little one. I read your original post about the prom but didnt reply as I delivered the day after mine and didn't want to say anything negative. You did amazing to get to 33wks and then have nec take your little one. My thoughts are with you and I hope you are getting the support you need. Michelle x

[Platinum]

Sillymoo, to answer your question I don't think I felt lost in the system, but maybe I just didn't know what to expect! I had the old-fashioned prolene with beads, so the stitches needed to be taken out. I remember the midwife coming to the house for that, and maybe one other time, and then discharging me. I booked a 6-week check with the GP, mainly to make sure that I had an official record of being fit to drive again, but apart from that the 6 week check was a waste of time really - he didn't seem to understand what I was there for, and I had to ask him to check if my scar was healing ok. He certainly didn't do any sort of postnatal depression questionnaire.

Much more importantly than that, I am so so sorry to hear of the heartbreaking loss of your daughter. My heart goes out to you and your family x