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.

Have just conveyed 1.6kg to pounds. OMG!! 3 and a half pounds!!! What a feisty little lady to feed and stay warm at that size. Hooray for the feisty ladies on this thread!

Yes I think my DS was sent to teach me patience. He took forever to get off the ventilator and then CPAP, it was painfully slow. That's why I'm always so pleased to hear when babies are doing well with their breathing. I remember DS's blood transfusions, they make such an amazing difference. YY to give blood! I always did and DH has been inspired to start since DS came home.

Sorry you have had a tough week. Reflux is a weird thing. Although DS was finally diagnosed with it and reated for it I'm not sure he truly had it, it was just something to try when they had tried other things. I hope Charlotte has a better few days now she's had blood.

Clabsy I am reading your posts and looking at DS2 who turned 2 today. He is building a tower of blocks and taking great pleasure in driving his massive ride on digger. In my mind's eye I can see him in the NICU - 5 lumbar punctures, infections, reflux that meant he was the only baby still on apnoea monitors in the special care room, hydrocephalus that led to neurosurgery at 5 months.

When people with prem babies told me it would be alright, I actually didn't believe them. I couldn't imagine that given everything he'd been through that it could ever be right again. But it is - he is a joy.

You and your daughter have come unbelievably far - nearly 1 kg!

Ladies, thanks for your words. I am looking forward to reflecting back on this time and thinking you were all so right - it gets better and 'normal' life lies ahead of us. I am back in the swing of the routine after the wobbles of last week. A calm day was had today and so I am enjoying every 'highly saturated' minute of it! Will bean your words still ring in my head - enjoy the good because you really feel the bad. I have taken note and have a glass of wine in hand! I looked at Charlotte face to face (impossible to do with KC) for the very first time today as I had her swaddled in a blanket for the first time. Was so lovely not to have plastic between us. Brought tears to my eyes (nothing unusual there). I was struck by how long and narrow her is and when I joked with the nurse she said yes - one of the docs calls it toasty head because it looks like a slice of toast! I did laugh but I'm hoping that her head reshapes itself slightly at some point as I might not be laughing about it for long! Will be back when we reach 1kg. I hope it comes before the next hiccup.

1kg Mark has been passed!!! Hooray!

Hi clabsy, congratulations Charlotte (or toasty head!) on passing the 1kg mark! By the way, I had the same worries about my son having an odd shaped head, it's perfectly fine now. I think most prem babies get a bit of a squashed head but they grow out of it.

I'm so glad you are having a good few days and making the most of it.

Hello, v sorry for the radio silence - I have had to forbid myself from turning on the computer until I finished my final thank you letter. My productive time each day seems to be reduced with feeding and sleep deprivation to about an hour and a half each day, which seems to be spent mainly on laundry. Catching up gradually I hope.....
Eleanor was back in hospital for 3 days last week with a distended abdomen, having given up producing dirty nappies. We've stopped her iron supplement and she seems to be back to rights, though still often red and whimpering/straining. I wonder if she has a bit of reflux; as she seems worse after feeding and if we put her on her back. Eleanor isn't gaining weight as fast as she should, so I've also been told I need to correct her positioning and let her feed for longer. The upshot of this is that there is no time when I'm not either feeding or holding her upright. Still, if it helps her get stronger it's worth it. Clabsyqueen your post made me snort coffee out of my nose (like daughter, like mother...) - delighted that Charlotte has passed the kilo mark and I'm sure her toast-like head will rise in due course! I still get the giggles slightly looking at Eleanor's backside, as she has literally no buttocks at all, just a flat panel like a soft toy. Anyway, enough of laughing at our poor daughters...

Well done on the thank you cards sixer! Even with all the post-scbu hiccups. Hope the breast feeding is going well following the adjustments (mental note taken). I was in 2 minds about whether to get some hours of sleep under the belt or go back to the hospital - you've helped me me make my mind up. I'm off to bed while I still have help! Only just turned Lottie over this week to observe the no-bum situation, as observed by my other half. Very strange indeed! I'm going to concentrate on shaping her head for the moment. Update: canula free and gaining weight sloooooowwwlly. 1030g. Grateful for these quiet times. :-)

Update here: nipples destroyed (onto my 3rd brand of nipple cream) and morale not much better! Lottie has lost weight 4 days in a row and they are not reviewing her diet until weight review on Wednesday (currently only on EBM) She might have disappeared by then! This does make me worry about her feeding when she leaves SCBU. if EBM is not nough for her now why will it be ok to go home just on EBM?
On the bright side the little lady is now wearing little baby grows which is so nice for me, showing lots of interest in the nipple (too much in fact as she won't settle during skin to skin - roots constantly) and is seeming more and more alert and can even lie on her back for some hours of the day. I'm hoping the back lying will help the toasty head! I must also be grateful for every canula free day of course. We have at least 8 more weeks ahead a nurse said today. Week 6 almost completed. Hooray!

6 weeks! Did the nurses give you any ideas why she has lost weight? Is it because she is using lots of energy to feed?

Keeping to SCUBU's schedule was often frustrating. It must not be worrying them though, that your DD has lost weight, otherwise they would do something wouldn't they? And what I mean by that is that they must be happy with how well she's doing overall (toasty head notwithstanding!)

Clabsy, ouch on the nips - if she's rooting constantly, you're in pain and she's not putting on much weight, has anyone checked your latch? Apols if really obvious and already tried. Can't believe it's already been six weeks.

Sixer, am also v impressed on the thank you cards . Know what you mean about the no-bum, I got a bit obsessed with DS's. He does have one now, though, honest!

Hi, I've followed this post and congratulations on your babies. My daughter Alice was born last September at 27+6 weeks and spent 9 weeks in SCBU. I was originally told we would spend at least 12-13+ weeks in hospital but at 9 weeks the unit decided that there wasn't anything that could be done there that couldn't be monitored through community care at home.
Clasbyqueen, regarding feeding I would try not to worry. BFing would be adequate on discharge because a term/nearly term baby's nutrition needs are very different from a prem. It might be that they decide to fortify your EBM or mix-feed before discharge but this does not mean you will go home doing this as by then Charlotte would be significantly stronger than she is now. In my unit I was told that the fats and nutrients that help babies to acquire that lovely chubby look happens in the last weeks of pregnancy so it could be for these next week they have to add some nutrients, calories and iron to EBM. This doesn't mean your milk is inadequate at all, just that while your LO is still small she just needs the equivalent of a million cream cakes! I didn't express as had milk problems, but in my SCBU it seemed that the mums of later-gestation babies went straight to BFing/EBM only but mums of earlier babies fortified EBM for some feeds, especially when they were not present to practise BF and/or used a special prem formula for a few weeks until the weight had shot up. Every case is different though and these babies are a nuisance at worrying the living daylights out of you! They are very naughty at going through phases and then just as quickly being fine and dandy.
Re the using energy thing, unfortunately it can be one of those one steps forward and two steps back. sometimes they need a bit of extra help, eg short term oxygen to take the pressure off or less handling for a few days to optimise the energy. Again though, each case is different and they won't do anything they don't need to. Excellent about the rooting! Alice used to eat her sleeve or my jumper instead-odd girl.
Hope tomorrows review goes well :)

eye of the storm /still frazzled, LO still on hourly feeds with a syringe and NG tube so hardly exhausting for her! All nipple action is strictly non-nutritive. We are a long way from breast feeding as she is still in an incubator and can't hold any body heat for very long so has to be swaddled to within an inch of her life or hastily put onto my skin to keep her warm. Some nice fat should help that soon. temperature control has been a big problem, I realised that she had spent 3 days being slightly chilly! Can't help weight gain. There has been some and is now 1090g. They have suspended daily weigh-ins as I was mostly crying through it! It is such a relief to not have to follow every gram.
Amy Mouse - that is a very reassuring explanation thank you so much. Makes perfect sense. Well done getting out of there sooner. You must have been relieved and terrified! I'm expecting the same combo!

Ah, I'm sorry - showing my ignorance. Glad they've laid off the weigh-ins for a bit, they are horrible horrible moments. I've wept over 10g before.

DS2's consultant was very keen on babies doing non-nutritive sucking, but I guess if she's just chomping rather than latching, that accounts for the soreness. Have no idea what you'd do about that, maybe someone like tiktok could advise?

Clabsy, it's great to see the back of the horrible canula, isn't it? I really hope I never have reason to see an IV line near Eleanor again. Charlotte sounds like a bright button, rooting away albeit non-nutritively. I can back up Amy Mouse having seen earlier given fortifiers whilst Eleanor and others were not, even if weight gain sometimes also stuttered.
We are fully into the homebound thing now, with all that entails. Eleanor has been back to hospital with a swollen abdomen and lack of poos, and she is keeping us very much on our toes tonight with heart wrenching sobs which seem also to be gut-related - she's had over 24 hours without a dirty nappy now. It sounds so trivial, being constipated, but the poor creature is expending so much energy pumping her arms and legs and wailing that I do panic slightly, and she is inconsolable. Probably I should seek advice on another thread but I tell myself if she weren't so tiny I wouldn't worry so much. Sorry Clabsy to complain despite having her home - I'm afraid the worrying hasn't quite stopped yet!

Oh sixer, poor you and poor Eleanor. Constipation and distress doesn't sound trivial at all. In fact it sounds like she's having a tough time. I'm afraid that this thread has probably outlived it's usefulness for you in this regard so I won't feel abandoned if you start a new one elsewhere! Keep visiting though! Your posts are helping me to change my approach to home coming. Although I am very much looking forward to it, I am no longer seeing it as "an end" because of course it's only a beginning. I am hoping a realistic attitude will help take the sting out of the inevitable hiccups that will ensue. I have purchased a super Dyson to combat the dust you mentioned, wedge mattress for reflux as well. Where is Eleanor sleeping? I am worried about having a tiny baby in moses basket with blankets/huge sleep suits. If you have a spare minute then please let me know how you LO sleeps. Best of luck with the bowels!

Hi sixer sorry Eleanor is having a bad time with her belly. I have seen advice elsewhere on here that it is pretty normal for a breastfed baby not to poo for several days sometimes, though obviously it must be horrible to see her in distress. Baby massage helped DS to poo, might be worth a try? I used to massage his lower belly in sort of clockwise semi-circles, one of the NICU nurses showed us. Hope she settles down soon.

Clabsy I am so pleased Charlotte is doing so well, those tiny steps forward are really building up. Hope she has put on a bit of weight this week. I think DS was about 1600g when he could maintain his temp and come out of the incubator. Hopefully it won't be long for Charlotte.

DS slept in a Moses basket next to our bed in a small Gro bag I think.

Quick update: Charlotte doing well despite severe anaemia. She doesn't seem to have realised this yet an is showing no signs of tiredness despite the numbers on her chart! She is showing lots of interest in sucking an we have had a couple of successful breastfeeding sessions although at 1.260kg she is not stopping the fortified tube feeds any time soon. Plodding on quietly in this way is the best possible outcome we could have hoped for. I feel very lucky. Can't believe she is over 7 weeks old already. I realise what everyone says about children growing up so fast is true! Hope you are all enjoying the summer holidays and strange weather!

That's great news. Like you say, the best possible outcome and long may it continue.

Well ladies, within the space of 48 hours we went from choosing baby grows for her new life in an open cot and practicing breastfeeding to an incubator in intensive care, nil by mouth and a diagnosis of NEC. The thing I have feared all along. I just pray it doesn't come to surgery. Heartbreaking and exhausting, especially as I was gearing up for home after almost 9 weeks here. The proverbial roller coaster continues :-(

Hi Clanbsy

I am so sorry for your little one. I thought it may help to hear about my DS. He was born at 30 weeks exactly and weighed 1.5 kg by day four his weight had dropped to 1kg and NEC was diagnosed by day six he had a deep line put in which gave him TPN (via a pump drive)which bypassed the digestion system to allow a chance of recovery and he was also on three types of antibiotics which were given via the cannula. I will be honest it was a very rocky road and we had one very very bad day which even now is painful to think of BUT he did get better. It took just over two weeks and he didn't require surgery despite how sick he got. We also found that he required CPAP allot more - this is normal as his body needs to concentrate on fighting the infection and not on breathing therefore it is a good thing really. And the good news is that three weeks after the TPN was stopped he was home! He is now a typical 22 month old into everything and is just fine (except the 40% hearing loss but that is NOTHING to do with NEC)

BTW a baby opposite did have to have surgery and she did come through OK although i do not know the in's and out's

Good luck to your little one and big hugs to you and your family

Any questions please either here or by pm

Mrs pear, thank you so much for sharing your story. I hope we get through this quickly and with a positive outcome too.

So sorry to hear this, come on Charlotte! We escped NEC but one of the babies in my unit had it and surgery; despite surgery he came out just 2 days after us, fit as a proverbial fiddle. I don't experience of surgery but have had Alice go backwards and forwards including a post-discharge intensive care stage that got very rocky very very quickly and included a test run of all kinds of support available;it might look like they "regress" when ill, but as Mrs Pear said, they need to divert energy to concentrate on zapping the nasties. It is amazing how quickly they can bounce back after. Be kind to yourselves, just take each day, be completely selfish and stock up on biscuits. If you need to talk to someone, most hospitals have a chaplain (some 24 hours) whom you can wander into and have a weep, and if you're lucky, a cup of tea. They might also have parent accommodation so you can stay on the hospital site so you aren't far away in this difficult time. Thinking of you x

Thanks for the kind words Amy mouse. I'm going crazy thinking it was her immunisations that started this awful chain of events (now ventilated and on morphine for pain). Argh! Going to start a new thread on it.

just wanted to add positive vibes for Charlotte, willing her to get better as speedily as possible. We're looking forward to exchanging experiences of the outside world, so hope you'll soon be over this and making great strides again xxx