Any much needed advice from mums of babies born early due to placental insufficiency?(296 Posts)
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.
Delighted to read that everyone on the thread is doing so well, occasionally get the chance to check in a rare quiet moment when Clemmie has decided to will sleep in her moses basket!
Clemmie is now 15 weeks corrected or 24 actual (frightening how quickly time has passed!) and just past the 5kg mark, thinking it may be time to crack out the carrot puree and so went to a talk on the subject of weaning preterm infants last night. Advice seems to be to wean between 5 and 8 months actual, but to look for cues like putting hands in mouth and an interest in food.
So, will be most interested to see what others have done. I think the time may be approaching, but it seems awfully grown up for such a little person!
Hi MMM - clemmie is 5kg! Wow! Brilliant! Im impressed you got out and about for a talk. It seems ludicrous that I'm talking weaning at 2.4kg! Gave her mashed banana today and she loved it! No vomiting or choking - result! Going to try one thing a day for a few days although she is now writhing around on my chest in great discomfort but that's par for the course.
Hi there. Weaning is totally bizarre with a prem baby I found. There is a really good booklet on the Bliss website, or they may have given it to you in the going home pack. I was advised to try before six months actual, and DS was only about 8lb. I have always had to give him high calorie food and got some weird looks for feeding chocolate desserts to a baby who appeared newborn. He never took to food in a big way and it is still tough to get him to eat enough.
I used to feed him in his car seat or on my lap as he couldn't hold his head up. Hope Charlotte is still enjoying her banana.
It seems extraordinary to have reached this point already! I confess it hadn't occurred to me to even look for signs of readiness yet. Eleanor will be 4 months in a week, and until now I've been thinking we would start at 6 months or even later, as she seems to have such a reaction to many things in my diet. I can see though that it might be an improvement on milk for the reflux. Hmm.
Weaning is very strange indeed! As with most things Charlotte looks far too small to be doing any of them! Facing out in her sling is her new favourite and we've had a few comments that she's too young for it. Her smiles and giggles put them straight! Weaning still going nicely and very much encourgaed by her consultant. Baby rice, pear, mango, sweet potato etc... Trying to get the high calorie stuff in there but still only once a day. No chocolate desert yet though! Lottie hanging on the 0.4 centile at 2.7kg and going for hernia op at GOSH tmw. No respite yet for the Poor little lady. I'm dreading the 4 hours nil ny mouth before hand as she feeds every 2 hours. Going to force feed her with a big bottle in our window of opportunity. Wish us luck
Ah bless you, DS had a hernia scare shortly before he came home and we were shipped off for surgery but it proved not to be necessary. I hope Charlotte's op is straightforward and she is home with you soon. GOSH are just amazing and make you feel so confident, we went there for PDA op.
DS is still on the 0.4th for weight at the age of 2, he's on about the 25th for height though. Glad Charlotte has taken to her food well.
How is Charlotte after her operation? It would be the nil by mouth that I would dread most as well - hopefully your fill-up strategy worked well. Eleanor has climbed to the 9th centile for weight, still on 2nd for height and her head is on the 50th! So am planning to continue bfing for a month or so longer if we can. I think I'll follow your example with the sling though - I know she'll love facing the right way. My only worry is that she may never sleep during the day again!
Hi sixer - nil by mouth was hideous esp as it stretched to 6 hours due to some lost paperwork. Grrr! Op went well and recovery was fabulous.
All good here -Lottie almost 3.5kg but this still places her at 0.4th centile for weight but 50th for head! I'm very impressed by a 9th centile placement. I wish I knew what I could do to make her jump up but we are feeding every 2 hours 24/7 as it is! Expressing hind milk to make sure she gets the fatty stuff too! Oh well, she seems very healthy and happy at the moment, even sleeps silently and poohs independently! No reflux anymore and lots of chatting. She just loves to 'talk' which is sooo nice. Hates tummy time though and has the classic floppy wide arms of a prem baby but can't persuade her to use them to push up at all. I fear she will never crawl and may be a bottom shuffled instead. No big deal I suppose. How is Eleanor's sleeping now? I wouldn't have believed it 6 weeks ago if you had said she will sleep without grunting! NNU seems such a long time ago now. Weird.
hi everyone i hope this thread is still going. I had low papp a (0.16) when i was 12 weeks. Have had one doppler scan showing my placenta isn't working properly. He is measuring 3 weeks behind what he should be. I have all the symptoms of pre eclampsia apart from the high blood pressure which is the only thing keeping me out of hospital. i try not to worry but its very hard
any help would be great.
Hi Worriedmummy - how many weeks are you now?
I had low PAPP-A at 12 weeks and high uterine artery PI with a notch at 22 weeks - went on to get high blood pressure around 28 weeks and DS's growth (abdo and femur) dropped behind. He came out by caesarian at 35 weeks weighing 4lb 5oz. I'd been on beta blockers since 30-ish weeks.
Are you being scanned regularly? Being seen in the consultant's clinic? Keeping a record of movements? (do go in to the maternal assessment unit for a CTG if you think baby is moving less).
Hi Worriedmummy, I'm the OP, sorry to hear you are having a worrying time. Are you being well looked after? If you've read the whole of this rather long thread you'll see that lots of us have been through this and come out the other side, albeit after a rollercoaster ride. Are you being regularly scanned? This was key for us. Let me know if there is anything more specific I can help with. My beautiful baby girl, who was born at 31 weeks weighing 923g is now a feisy 9 month (corrected) old crawling around and creating havoc.
I was also told (pre-20 weeks) that wonky PAPP-A readings can have no negative impact at all on baby or pregnancy. What is the plan for your care and monitoring you?
Thinking about you; know how horribly stressful it is, but hoping things are going ok.
Thought I'd add to this thread as a year ago I was TOTALLY distraught and completely convinced I was preparing for a still birth. The ladies on here were fabulous in their support. Anyway we celebrate our daughters first birthday next week. She is doing so well I could never have predicted. IUGR placental abrupt ion and insufficiency 3 months in NNU and so full of personality and energy. We are so so lucky. Good luck to anyone consulting this thread. Worried mummy I hope things worked out
An update: Eleanor is doing fine, at nearly 18 months. At least as feisty as her friends, a little bit small but developing completely normally. She was over her reflux at 6 months (a huge relief) and despite having a bit of a tendency to wheeze (not related to her prematurity or IUGR, I think) is incredibly active, and seems to enjoy life very much.
I was prompted to log on again because I am (deep breath) pregnant again, and wondering what this pregnancy has in store.....
Lovely to hear about Charlotte x
Lovely to hear all is well sixer, and many congratulations on your pregnancy, I had a little girl in april, she's nearly 9 months now, same problems as first pregnancy but carefully monitored and lots of drugs kept us going till 37 weeks and 4lb 11oz, so difficult times, but nothing like 28 weeks and less than 2lbs... hope it all goes well x
Hi sixer - big congratulations! How many weeks are you? I have everything crossed for you. I've had 2 miscarriages this year - annoying but after the drama of 2011 I feel I can handle just about anything! (Having charlotte certainly helps dull any pain) Hoping to stay pregnant very soon and also brave the terrors of pregnancy after premie! Congratulations to efeslight too. What drugs kept you going? I've been prescribed 75mg aspirin and 5mg folic acid. Bog standard stuff as far as I can tell.
hello clabsyqueen, sorry to hear you had the miscarriages, i hope 2013 is better for you, i was on 100mg aspirin and daily injections of the blood thinner clexane, starting at 20mg a day, then up to 40mg a day
Thanks efes - I'm a bit worried that we have been under-egging the pudding with our minimal drugs routine. My bloods all came back normal so I haven't been advised to take injections. Did your bloods indicate anything or were the injections just a precaution? When did you start on the injections?
clabsy, am ashamed to say we cant remember the details accurately, i was fainting and swooning at the time it was being explained...am a bit of a wimp...what i do remember was there was a slightly raised level of an antibody (are there lots of different types?) which would slightly raise the risk of clotting in the placenta, but yes, given the previous pregnancy, the clexane was really just precautionary, started injecting at about 12 weeks, then continues up to going in to hospital at 36 weeks
Hi efes and clabsy, lovely to be in touch again. Sorry about your miscarriages clabsy. You seem to be pretty buoyant though, and I too feel fairly unfazed about pregnancy because I feel (mainly) very lucky already to have Eleanor here, bouncing around. That said, I am starting to wonder about how it might all play out if we have a repeat experience, but with a 2-year old at home while we camp at the NNU. I'm gripped to hear about your experience, efes - I probably hadn't really taken seriously up to now the likelihood that placental insufficiency will recur. Last time I was asked to be part of a study into whether placental insufficiency is caused by the mother's own heart - which may be perfectly up to the job in everyday life, but cannot cope with the huge demands of a pregnancy. This would suggest that it will happen again, but it's wierd how I managed to forget anything we may have been told about likely recurrence - I think I was so focused on the current perilous situation I didn't care at the time if I never had another baby, if I could just deliver one successfully.
I'm only 10 weeks so far, but have a scan next Wednesday back at St George's, to see what action may need to be taken. I've been taking aspirin anyway since week 6, because I remembered that it was too late last time, and thought it would do no harm. Will ask about clexane for sure.
Well sixer we must be similar weeks, As we have just made it to 12 weeks and will be getting our second little one in the summer all being well. I got pregnant straight after second miscarriage (a small bit of luck!) On aspirin and slightly nervous. I wonder what our pregnancies will hold. Docs have said 'the odds are on your side'. Meaning that we are unlikely to have another case of placental insufficiency and if we do its unlikely to be as severe. I was happy with that until he refused to talk about the 37 week c section plan that was bandied around in our consults after the IUGR pregnancy. He said 'if you get that far we will talk about it then'. NOT what I wanted to hear. Good luck for your scan sixer and thanks efes for the details.
Lets hope that we both have the luck of Millie Millie Mandy who started this thread and her second just before Christmas.
Hello to clabsy and sixer, hope all is going well...its interesting what you say about the mothers heart sixer...in the middle of the second c-section, (always a good time to ask a searching question) i asked the surgeon about the placenta...i imagined a dried up, wizened creature, but he said it looked fine, just small.
i remember after my first was born, asking about the possibility of the problem re-occuring, and was always told, it was very unlikely, but somehow, i seemed to think it would happen again, but yes, far less severe this time.
Would love to know how you are both getting on.
Hi efes, nice to hear from you - ticking along ok here. 17 weeks now and have been given no cause to panic just yet. Size of baby ( another girl yay!) is normal though they won't be drawn on where in the range of normal is she and all looks healthy but it wasn't really til 20 something that problems started to show themselves so I've a few weeks if blissful ignorance. I am wildly optimistic that it won't happen again - no other option really as I would never have taken this risk if I thought we'd have a repeat. I'd take 37 weeks and 4lbs 11oz as a major success!
Well, what wonderful news, Clabsy! When is your due date? Mine is 9th August, so I think I'm just behind you this time! Scan at 12 weeks was normal, but, as for you, the 20-week scan will be the million dollar milestone, as that was when Eleanor's IUGR was picked up. Are you back under the same consultant you had with Charlotte? I'm toing and froing between our specialist at Tooting and the consultant at Kingston, with no-one wanting to predict when/ where/ how delivery might take place! Professor Basky told us that the chance of recurrence is 25%, reducing to 15- 20% when aspirin is taken, and with aspirin also reducing the severity of the condition if it does recur. That seems like pretty good odds to me. It seems odd to think we might both actually be getting giant bellies and all the accompanying discomforts this time, having never had them before!
Efes, I also asked the surgeon what my placenta looked like, imagining some hopelessly motheaten dishrag, but was told it looked quite normal. I think I was quite disappointed!
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