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.

Sixer10 I understand your reluctance to give a bottle. I was so determined to breastfeed and I told all the nurses and was so firm about my intentions. But lack of progress and really a lack of support from the nurses ground me down. One day one of the nurses said she'd get another nurse who was good at helping mums breastfeed to give me a hand. She was the one who ended up saying - just give him a bottle.

I was gutted when he took it so well but you can see from my previous posts that in the long run it had no effect. It's not each fight you need to win, but the whole rotten battle.

I would say you and Eleanor are well on the way to exclusive breastfeeding despite the obstacles being in SCUBU has thrown your way.

clabsy so glad to hear that Charlotte is doing better and enjoying her first proper taste of milk.

sixer it was definitely my experience that the bottle caused no problems. The hospital offered a particular type of teat designed for the breastfeeding babies that made them work a bit harder, they were Nuk ones I think. Still I know that half the nurses used the wrong ones. Maybe I was lucky but DS was not fussy at all. The last few weeks in hospital he demand breastfed all day and had three bottles at night and it was fine.

I had the same advice as EyeoftheStorm from the breastfeeding nurse. She said once he knew what to do the hardest part was done and a bottle would be fine.

Thank you both very much. We've realised today that getting E home and giving her the easiest time are really our priorities, and with your reassurance I'm prepared to work up to exclusive breastfeeding when she's home. So I rang the night staff to tell her nurse to try her on a bottle tonight, and was startled to be told "Well, she loves her dummy". I knew nothing about this dummy, and about how long the night staff have using it. E has always been very sucky during the day, seeking my fingers, her own fingers, and even the bedclothes. Now I wonder if she is like this because she has been given a dummy each night for the past week.
So, now......opinions on dummies, please?? Should I tell them to banish it? Are they even likely to follow my wishes if I do? It's so upsetting to have this going on when I feel so lacking in control of what happens to Eleanor as it is.

Sorry, Clabsy, if this is making you worry about Charlotte. I recognise that a lapse in professionalism fron one of the nurses in failing to get permission, doesn't offset the care that others have shown.

Hi sixer. How upsetting for you that they haven't discussed the dummy with you. That is really unfair.

DS was given one pretty early on and I said no to it. I have never liked them. I had to say no several times and have it written in the nursing notes. Then, a nurse I trusted was on one day and explained why he should have it, and asked if I would like to discuss it with a doc. I had a chat with a consultant who was a developmental care specialist and she understood my reservations but she advised he should have one so I agreed. She said it helped them practise sucking as they would in the womb and also there is evidence it reduces pain for procedures like having cannulas put in and blood tests (don't know if that is relevant to Eleanor). I also felt that if I wasn't there to comfort him then he could have whatever made him relaxed.

Anyway that is a long winded way of saying that I was ok with it once it was all explained and it was clear that it was my decision. It really upset me when the nurses were ignoring/not asking my wishes so I understand how you are feeling.

By the way my son suddenly lost interest in the dummy around term age, think he worked out it had no milk in it!

Sixer10 how frustrating for you. DD1 also spent time in SCUBU (born a little early at 36+5 with some breathing problems). Writing that I feel a right old veteran of SCUBU! Anyway, a nurse rang me one day and DD1 was crying in the background and she asked me if they could give her a dummy. What was I going to say? Just had c-section so couldn't get to her to comfort her.

I had all the same reasons for not letting her have one but they all dissolved away when I heard her crying. To cut a long story short - she had dummies and bottles and we still breastfed. No confusion, no problems. My experience with her meant I always thought there was hope for breastfeeding DS2 whatever was put in his mouth.

It's funny how different experiences of different SCBU can be. 'My' SCBU was extremely pro-bf, and as far as I could see stuck with NG tubes for babies whose mothers were trying to establish bf. The babies having formula had bottles.

Or maybe it's that Eleanor's doing so well that they think she's strong enough for bottles and think it's nicer for her than another NG tube. Was she ever tube fed?

Thanks everyone - don't know what I'd do without your advice! I was lucky enough to be present this morning to hear a consultant challenge the nurses on how cautious they are being in only letting me bf twice a day. The upshot of this is that I have been allowed to bf on demand all day today, and Eleanor has managed really well, not needing tube feeding at all. I am so happy with this I have even agreed to the dummy at night, if it comforts her, and now the benefits to pre-term babies have been explained. the matron said I should certainly have been consulted - she has been given it every night since she arrived at Kingston, it seems. Anyway, no harm done luckily. Not sure whether I'd say this unit is pro-bf or not- they certainly seem keener on using bottles to get weight up, so I may need to argue my case again when Eleanor is weighed on Sunday - fingers crossed. Thanks again for all your input.

Well done sixer and eleanor! No tube feeding for a day. I'm sure you're going from strength to strength.
Dummies - I heard all the same things as will bean did but she'd had for days by the time I knew about the benefits. Was too shellshocked to protest. I actually thinkit helped me when she had her lumbar puncture! Knowing she had something.
This is a very useful thread - I hope it will be relevant to me before long!
Charlotte now back on the up - full feeds of 5 ml an hour. No more IVor long line. Yay! I'm hoping that some weight gain will follow as she lost some due to the infection. Off to pump!

Great news, clabsy - it was only last week that Eleanor was taking 5ml per hour, then the nurses ratcheted it up dramatically; she's now on 34. It's so lovely seeing the back of the horrible IV, isn't it - it's so cumbersome, keeps dislodging itself, and I found it utterly heartrending watching the nurses recanulate. Assume the canula can come out now as well, or is Charlotte taking other medication through it? What's Charlotte's weight now?

Just wanted to add my experience about feeding, as I was absolutely adamant that I wanted to BF exclusively; our unit were thankfully massively supportive of this, in fact, any Mums who wanted to bottle feed were actively discouraged, unless of course it was needed. Clementine was managing to suck a few times at the breast at just 2 days old (so 31 + 4) and we kept this up, in tandem with tube feeds (being IUGR, weight gain was always the biggie for us) and then tried dropping the feeds from the 180mls/kg to give her a bit of ecourangement and hunger (why would a baby contentedly being fed through a tube have any incentive to suck?), I roomed in quite early as it was always reported that she spent most of the night wide awake and rooting and it took weeks for it to actually click. Then suddenly it all fell into place and we were away. It was absolutely demoralising for me at the time, as well as being exhausted and trapped in that strange never leaving the hospital feeling, I hit a wall, but luckily kept going and am so pleased now that we are home that I did. Clemmie is slowly and steadily gaining weight (4llb 13oz today).

Hoping Eleanor and Charlotte are both doing really well. xxx

Hello ladies, feeling slightly low here. Charlotte has lost weight for the 5th day in a row. Now at 778g. (birthweight 660g and now 3 weeks old) It seems that the extra nutrition in the long line was the thing keeping her growing. My milk alone is having little impact. She is not tolerating large volumes well so they won't put her up to 180ml/kg (currently on 160ml/kg so not far off) so milk fortifier has been started today. Trying not to feel even more of a failure. The hospital dietician is away until next week for more specialist advice. Feel like we have so far to go and have gained o little in 3 weeks. MMM you say that clementine was sucking at 31+4. I can't imagine even holding Charlotte in a cradle hold at 31+2 today - she's so tiny! I realise I must stop comparing but it's sooooo hard not to do it.

So sorry you're feeling low. When you're in the worst of it, it's hard to see the light at the end of the tunnel. All you want is for things to move forward even if it's only by the tiniest amount.

You are doing everything you can. Do not underestimate what you are doing.

And no comparing allowed! I remember wishing DS2 was a girl because they seemed to get out of SCUBU way faster than the boys. Hopefully that's true for all the DDs on this thread.

Clabsy, my DS didn't lose weight five days in a row but there were def several days where he failed to gain and/or lost, and I was equally distraught and convinced my milk was substandard.

It wasn't, of course - he's now looking distinctly chubby on it (if still tiny).

Charlotte's very very small still, she's only just getting over her infection and she's not on the amounts of milk that a full-time baby would be on, proportionally speaking. We had fortifier, too, and it eventually did the trick for us - but even on that there were days where he didn't gain and, at least once, lost.

And Charlotte's earlier and smaller than DS2 was so has a more uphill road ahead of her. You WILL get there, I don't doubt it a bit.

Hi clabsy sorry you are feeling low. It is very hard when you can't see progress. Just wanted to say, we had the fortifier too and it helped DS a lot. It was a slow process though and he was still only just over 1kg at seven weeks old. He stayed on fortifier until shortly before he came home and I know several babies who have come home on it. 'Poor weight gain' was written in our notes so many times. DS is still pretty scrawny and below the second centile at nearly two but he's gradually creeping up. Charlotte will get there and the fortifier will give her a little boost on the way. xx

Thanks for the encouraging words ladies, after accidentally sleeping in til 10.30 am today life seems more much manageable. Charlotte is also much more stable today so seems to have adapted to the fortifier. I am hoping this leads to weight gain this week although they have reduced volume of milk slightly to help her manage so it's giving with one hand and taking with the other! Ps wilbean have now met Angela - very nice lady indeed.

Glad she's settling, really hope this does the trick.

Also glad you got some sleep - sounds like you might be getting a bit burnt-out. All day every day at hospital is really really hard.

This might sound awful to you, but is there any way you could give yourself the morning or afternoon off? Slouch round at home, sit in a cafe with a magazine, go for a swim, anything that resembles normal life and isn't SCBU...? I felt guilty but it really helped me.

Sorry about the recent silence - have been struggling to keep up with any communications at all this last week. And on that basis, Clabsy, I second the encouragement to have a more deliberate lie-in one day if you can manage it (and even if you can't, you still should!). My own feelings of wretchedness about placenta/milk/foreboding about the future are, I can see, directly linked to my levels of tiredness, which peaked this morning and forced me to take to bed for the day. I feel so much calmer now. We are rooming in tonight as an experiment to see how E gets on with breast feeding full-time (it seems the unit are behind it now, after all). If we manage, there is a chance we will be allowed home tomorrow, though I'm not letting myself think about this!

Hi sixer, how exciting that you are rooming in. That is fantastic whether or not you can go home tomorrow. I hope you are enjoying a night cwtched up with your little girl, lots of skin to skin will help the feeding. Fingers crossed for you.

Sixer, squee! Can't believe it's happening already, bloody well done the pair of you.

Can't wait to see how you get on.

Wow! Rooming in already that is fantastic. What great news. Wishing you best of luck. I think I'm going to try and do something 'normal' soon but the LO is wrestling with reflux, finally been prescribed medicine for it today but havent been able to bear seeing her retching and baulking at every feed so try to be there for her. Not sure it helps very much but makes me feel like I'm supporting her. I'm hoping the drugs work their magic on her and allow me to feel like I can be away for an afternoon/evening. I don't feel able to leave her so much because she has been moved to the lowest level of care (which I know in the grand scheme is a good thing) and that means 1 nurse to 4 babies. It's hard for them to make sure her feeds are delivered slowly and to spot when she needs a bit of suction in her mouth etc. Have definitely hit a wall this week as the threat of imminent danger has passed and the reality of a long hard slog is beginning to dawn. Will do my best to take some time out as you ladies suggest.
Sixer - enjoy the new challenge! Best of luck

Here's hoping that sixer is getting to grips with being at home with a new baby...

hello all, we were allowed to take Eleanor home on Thursday, after 2 days in a strange sensory deprivation-type room where we eyeballed each other for 48 hours beforehand. I had thought E was a very quiet baby; now all the background noise is gone I see my mistake! It's lovely to be able to hold her, feed her on demand and do whatever feels right - on the other hand, there is now of course no-one to see to her in the night, and last night we both had no sleep at all as she developed some sort of digestive problem on top of the snuffliness that she has had since she came home (evidently our home is considerably dustier than the NNU). I have today realised that eating a whole pineapple while breastfeeding is not beneficial for anyone, and have ruefully been eating exceptionally plain food all day.
Enough of my banality. Clabsy, Eleanor came home alot sooner than expected in the end - she was 36.5 weeks gestational age and still weighs only 1.6k. I really hope you may have a shorter haul than you are expecting. I totally sympathise with you wanting to be with Charlotte to make up for a certain level of care. I got increasingly paranoid about the night nurses in particular, but in the end I have to concede that Eleanor was cared for perfectly adequately and with much greater calmness than she now is at home!

I knew it . Really really pleased for you.

DS2 got terrible colic once we got him home - I found out in the end that Colief was the way to go. Massive faff as you have to give it in expressed milk, and expensive (tho GPs will prescribe). Might be worth trying?

Congratulations sixer and Eleanor!

clabsy hope you have been able to have some time out. It is hard when you don't quite trust the nurses to have time to do everything right. But in the other hand, that must mean you are so much more confident looking after Charlotte and maybe feel a bit more like a 'normal' mum? That's how it was for me. Very very hard to leave though when you know that you know best. As sixer says I hope you have a short haul to home.

Wow sixer! You must be thrilled and overwhelmed to be home. Love the description of the transitional care! Home at 36+5 is incredible. We have been told at least a couple of months by one consultant and 6 weeks ish by another (currently 32+3) so I'm not getting my hopes up. Will bean I saw that your LO was home 2 months after his due date. You must now surely be highly skilled in the art of being patient! we have had a tough week. Little lady was anaemic and it took 3 days to spot it. She turned into a pale bag of bones in front of my eyes (heartbreaking) and was transformed back to my wriggly little frog (as the nurses call her) by the blood transfusion in under 4 hours (incredible). The miracle of blood. Give some folks! This week's challenge is again reflux but the docs won't believe it and keep taking her blood to double check for infections. I see another blood transfusion on the horizon. We are now at 956g so almost at the big KG!!!
I am soooo pleased for you sixer. Please keep updating about your experiences. I am off to buy a new Hoover tmw following your dust comment.