Any much needed advice from mums of babies born early due to placental insufficiency?

[Millymolliemandy]

Hi,

We had a very worrying appointment with our consultant yesterday at 26 + 5 weeks, where we were told that the placenta is not working properly and we should prepare ourselves for probable early delivery by c-section. We have another scan/doppler in a week.

We did have some pre-warning that this could happen with a very low PAPP A reading at 12 weeks, baby measuring small at 20 weeks, growth and doppler at 23 weeks where baby was still small but placenta working on the high end of the normal range.

I am desperately trying not to worry myself sick and instead prepare ourselves in the best possible way for baby coming quite soon, if the placenta function decreases over the coming weeks.

I wonder if anyone can give me any practical advice about preparing for a prem baby and a c-section. For some reason, the thought of a c-section is making me particularly upset as I had really hoped for as natural a birth as possible, and I am also desperately keen to breastfeed.

Sorry for the long ramble, but would love to hear from anyone who has found themselves in a similar situation.

Hi clabsy and sixer, have been following your thread for a while and so pleased to see your babies are both still hanging in there.

My DS2 was born in January at 35+5, weighing 3lbs 5ozs (1500g IIRC). Unlike you, we only found out about his problems on the day he was born - I believe it was more to do with flow between placenta and baby than the placenta itself but it's all a bit of a blur. What definitely isn't a blur is that we were told he had approx a week to live when the problem was discovered - completely by chance.

Anyway, just wanted to say that DS2 only spent three weeks in SCBU, breathed on his own right from the start, never really had any health problems barring a fairly persistent case of jaundice in the early days, and was discharged EBF. He's still absolutely tiny at five months (below 0.4th line) but happy, smiley, contented and beautiful. Tiny babies can be very very tough and determined to thrive.

I'm so sorry for all the worry and anguish you've had, and wanted to say I'm thinking of you both and willing your LOs on for a safe arrival.

Thank you for sharing your story stillfrazzled. I'm glad your little one is doing well and that 1st percentile can still mean healthy and happy! 30+ weeks and 1000g+ seems like an impossible dream for us at this stage. I hope to be wrong!

I hope you are, too (sounds wrong but you know what I mean).

Every day you can hang in there makes a difference at this stage. The odds at 27 weeks are already very good, and you're so close to the magic 28-week cut-off...

I remember all too well what it felt like and am thinking of you often and sending good vibes.

I'm finding this a very long weekend, despite having loads to do. Clabsyqueen, I've been a coward and not looked at the report since Thursday. Now I think about it, we've had negative blood flow a couple of times, and the first time I asked about I was told that it was just one thing amongst many others that they are looking at and until now I certainly wasn't given the impression that the end was nigh.

It's funny - since 27 weeks the time has absolutely flown by, I hope it does for you too. In the meantime hope you are managing to keep occupied and cheerful through these long days; whatever it takes to get a comforting chest to lie on!

Can't quite believe I have the composure to write this but just to say I am currently waiting for my c section. This morning's scan revealed an imminent need for delivery so we are doing it. Wish us luck as we start this journey. 80% chance of survival by delivery. 0% if we had walked out the door.

Clabsyqueen. How amazing that you have reached this stage and got such good odds. Congratulations on the imminent birth of your daughter. I hope it goes smoothly and you can see her soon.

Feeling emotional for you as I have been literally where you are now! Happy to chat about the neonatal journey but I recall being pretty well prepared by the staff at UCH. I don't know if you have family around you but shout if you need anything brought in for you. Best of luck to you all.

Oh clabsy, I am crossing everything for you and your baby. Thank god you had that scan when you did.

PM me if you want to talk/vent about life in SCBU.

hope all goes well clabsy, sounds like you are both in good hands, take care x

Baby Charlotte arrived. Pink. Crying (yay!). Slightly heavier than expected - 700g ish. Ventilated but not needing much (whatever that means). Going to try take her off it soon. Totally shell shocked but happy to haveher out and away from my rubbish placenta. Thank you for your help so far ladies. NICU and breast pumping here we come. Good luck sixer x

Congratulations clabsy, that's wonderful news, sounds like she's doing really well, you've done a great job. Charlotte's a lovely name, take lots of photos and films if you can, and enjoy your daughter.

Congratulations! Well done Charlotte sounds like she's doing well. Hope you are being well taken care of too, and getting to spend lots of time with her.

Congratulations! So glad everything went so well - sounds like she's doing fantastically.

If it's any help, this www.mumsnet.com/Talk/breast_and_bottle_feeding/1119834-Calling-tiktok-other-experts-need-advice-on-expressing-while-newborn-in-SCBU was my thread where I got some excellent advice on expressing and keeping the supply up.

Some random things which helped me when DS2 was in SCBU:

1. When Charlotte's ready, kangaroo care was fabulous. As soon as he was plonked on my chest his breathing and heart rate would slow and stabilise, and he'd fall asleep. It was a lovely thing in the early days and really helped him feel like my baby. Even now, when he's tucked next to me he calms down and goes to sleep.
2. I really tried to think of it as a weird end to my pregnancy, rather than missing out on his early days. It didn't always work but got me through a couple of bad moments.
3. SCBU staff were lovely and kind and supportive and answered all my stupid questions - I bet yours will be just as good.
4. Being there for doctors' rounds every morning was a comfort - they really took the time to explain everything and ease our fears.
5. Leaving the hospital without him was hideous, but DH said it was NOT the proper homecoming, just a waiting period till we could all come home together. For some reason that helped, too.

Plus copious amounts of chocolate, cake, fish finger sandwiches, rubbish TV and wine when I wasn't planning to freeze the milk. And any and all help offered by family and friends.

Sorry if this is too long or too much right now, just wanted to set it down while I had a few mins inbetween feeds and nappies .

Will watch out for your next update!

Thank you for the tips - wine! Now there's a thought! Saw her this morning and she was having an hour or so breathing room air and moaning a lot! Good girl! Too scared to get too happy about this as 2 steps forward and 1 back is what we have been instructed to expect! At the moment cannot comprehend how any liquid will flow from my breasts but will check out that link, I know there are a few other pointers around some of these threads.

I like the sound of the moaning - if she's aware enough to decide she's not happy about things that sounds a good sign to me . To have been off the ventilator already is wonderful.

Two steps forward, one step back does sound about right - DS2 would take some milk and put on a little tiny bit of weight one day and we'd be elated, then puke a lot and lose a bit the next day and I'd be devastated. It's a battle of millilitres and grammes and time and it's bloody bloody hard and exhausting.

As to milk coming in, mine took several days and then I suddenly had these rock hard zeppelins stuck to my front! Spent hours in a hot bath with flannels, trying to hand express.

I got nothing with the pump till the milk was fully in, but from about where you are now was able to squeeze out a few drops of colostrum at a time, which I drew into 1ml syringes and took along to SCBU. That stuff is absolute liquid gold, I was told, especially for immature guts, so every ml is precious and helpful.

Gradually built up to 2ml, then 5ml, and after a day or so was able to hand express a couple of ounces at a time. Then had a sterilising kit for the hospital's electric pumps, and a little hand pump at home for the evening and 3am sessions (3am was awful but am told it's the best and most necessary).

Given that you're prob in for a longer time than we were, you might want to look into hiring a hospital-grade pump for home - hospital could prob advise, I think NCT and Sure Start do hire.

Breathing air is amazing and it's great that she is making herself heard already. Is she on CPAP when she's not in air, or just oxygen? How are you feeling yourself?

Expressing is a strange thing. I managed to squeeze out a few drops about 24 hours after birth I think, the midwives on the ward will give you syringes to collect it. I second what frazzled says about the pump. In fact I started to use the pump too early and it made my nipples bleed, twas grim. Get someone to get you some Lansinoh if you get sore, they have it at Boots on Tottenham Court Road. Kangaroo care can help your milk come in too and there's no reason you shouldn't be able to hold your daughter if she's doing ok (I did kangaroo care with my son on a ventilator). Another thing they recommended was to express a few drops of milk onto a breast pad and put a fresh on in the incubator every day so your baby can smell mum and milk.

The expressing room is a good place to meet other mums and you will get lots of support in there. Re. pumps- UCH have there own stash of pumps to loan out for free, make sure you ask a nurse when you are coming up to going home as not all of them seemed to know about it when I was there. Don't be surprised if they don't keep you long, my son was born on a Friday afternoon and I was discharged on the Sunday morning. It was a bit of a shock!

My best tip, which took me a while to work up to, is don't ever be afraid to ask a question or ask to hold your baby or anything else. The early days are scary and I was very nervous and I would sit for ages wondering whether I should ask about X or Y. Maybe it's just me but I wish I had got over it earlier. Ward rounds in NICU used to be at about 10am and very useful to attend. Do you know which consultant is looking after Charlotte? They are all great in their own way but there is one called Angela who is so lovely and supportive to parents. I hope you come across her.

Sorry for rambling on. Thinking of you and Charlotte x

Wow! So much advice! Thank you ladies! No kangaroo care yet as she has quite a lot of jaundice and is in the middle of treatment. She is breathing completely on her own all the time now. Amazing! Cannot help but think that it is going to be the feeding that is the biggest challenge. Just setting my alarm now for the night's massage ritual! Hope I manage a ml soon!

So good to hear she is breathing alone, what a strong girl. Good luck with the expressing, you will get there. Those night time calls are quite a struggle but worth it. Some people say fennel tea helps encourage the milk, also make sure you are eating and drinking plenty, not easy I know. I am willing you both on!

Golly, two days away from mumsnet and everything is happening! I can't tell you how thrilled I am to hear about Charlotte, and how fantastically well she is doing, Clabsyqueen!!! It's absolutely amazing, I feel quite tearful to think how much of a tremendous fighter she has been, and how she has apparently walked casually away from a rubbish placenta (think I can say that, as I have one too), to start breathing air within the week!

Everyone here will obv have much better advice on breastfeeding in the NICU. I have been reading up a bit though in preparation and found that having shopped around NCT have the cheapest hire of hospital grade machines, and it seems that if you are using them regularly rather than for the odd occasion it is really worth getting these rather than the handheld ones or the weaker electric ones.
Expressing by hand to start with seems to be the recommended approach until the milk proper comes in, as the pump will only make you sore.
I found this Bump to Breastfeeding DVD specifically about breastfeeding premature babies helpful, although some of this might already be old hat to you, with your baptism of fire over the last few days!
www.bestbeginnings.org.uk/breastfeeding-your-sick-or-pre-term-baby/5645b784-fca3-4f49-9041-29eeca565eb4

I'll be joining you on Monday in the same strange new world! Look forward to hearing more about Charlotte's adventures in vocalising, breathing, feeding, kangaroo care.... And will do my utmost to stay in touch from hospital as well.

xxxx

Hello again and hi sixer - you have missed all the action!
I've been discharged and am now at home leaving the little lady in very good hands over at UCH. We are very lucky to live 10 minute walk away so it doesn't feel like I'm really leaving her. Cried pathetically on a breast feeding advisor this morning asking when I should give up she then promptly showed me how to get my colostrum out and we collected 0.3ml together! (I had been ineffectually massaging away). Considering our little lady can only tolerate 1ml an hour of food (or something) I consider that to be a fairly substantial meal!! The OH has now been enrolled in the game of catch the drops with the syringe and I have proudly handed over my third syringe (not full obv) just now. I realise that this level of detail could get tedious and most of you have already been through this so I'll spare you the rest but sixer you'll be here soon!

ps thanks for the tips on pumps sixer. Willbean has been at UCH so she has the inside scoop on this hospital already and told us about their stash - they are going to lend us one today.

If you're managing to get some out now, I reckon it'll go fine with the pump.

And it might not even be 1ml an hour - DS's first feeding plan (at three days old) was 1ml every FOUR hours. I might add that he sicked the first couple up, too.

Charlotte must be doing extraordinarily well to be tried on food so soon. And really glad you're nearby, we were only ten mins' drive away but that was bad enough - I was SO wobbly when discharged (one day later than they wanted because I begged so hard...).

Yay good going clabsyqueen. Glad you aren't too far away. I live about 45 mins away on the tube and wept buckets when we were finally kicked out (although I was discharged we were given a hospital room for the first two weeks until they were confident DS was sticking around). From memory he had his first feed at about eight days old (0.5ml every four hours) so I had a little stash by then!

It sounds like Charlotte is doing so well. I'm so pleased for you. I know you are told there will be backward steps but you must enjoy the good days as much as possible- you can't help but feel the bad ones so take the good ones too x

You sounds really happy, Clabsyqueen, it's fantastic. Breastfeeding still seems a completely mysterious art to me; I can't picture myself producing at all. But determined to try, and will take all advice I can muster. Can I ask how you are feeling physically, after your c-section? The OH will hopefully drive me the first 5 days or so, but after that I will have an hour's trip to Tooting each way (bus, train and bus), and I'm just wondering how I'll feel about that.
Also - silly question, do I need to take a towel to hospital, for showers?

Hi sixer - it's hard to say how I feel but it's certainly better than I was feeling 5 days ago when I expecting the worst. Physically feeling fine but very tired and i'm avoiding my scar if im honest too much to handle with everything else to think about. There is real sense of purpose at the moment and that is to master the 'mysterious art' of expressing. I like that phrase as it is mysterious indeed. I have just fallen about in a heap about the pressure of providing a clean area at home for expressing equipment and milk paraphernalia. I advise you to clear an area now - stock up with clean cloths for air drying equipment/alcohol hand gel/wipes for surfaces/medication/vitamins/jugs of water/treats. I think I've gotten a bit paranoid about cleanliness as the NICU is truly spotless. Home seems like a germ fest! It's also hard to keep track of times you've taken your pain killers/anti inflammatories/vitamins/arnica so I've got a little chart in a book to help me not forget to take care of myself.

Yes - you need a towel and as everyone has said - big pants! Enjoy your weekend and good luck for Monday. X