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.

I also meant to say, I so relate to your midwife appointment! I wanted never to go back to Kingston after they insisted on measuring me at 23 weeks, even though I had a diagnosis of IUGR, and reported that I was 6 weeks behind. Since then I've been going for fortnightly checks with my GP instead, which is much more relaxing - he doesn't seem to have a tape measure, and I don't have to wait in a room full of massive-bellied women (that sounds really bitter; of course I can't know whether they have different complications, but I do feel superficially very envious).

Hi sixer, glad to hear you are both hanging on in there! 30 weeks sounds incredible to me. I just cannot imagine making to that. The scan report was very brief, they didnt report the numbers they had on previous ones, only reported that the ductus venosus in the baby had gone up (a slight worsening in mr pandya's words). The situation is stable was also written. No growth estimate either, that will be next Wednesday. Not feeling very optimistic about much growth as my tummy has not changed at all and I have not gained a pound since last scan. Fingers crossed.

agree with above, clabsy, she's okay where she is for the moment, are you going in today again? 26 weeks tomorrow so try to keep positive, it sounds like you're being well cared for and closely monitored, so hope the news is good today, will be thinking of you and sixer.

Another scan yesterday, and another short reprieve - now on weekly scans, so we are obviously getting close.
Clabsy, I reckon you might be surprised by growth next week, irrespective of whether you can notice it yourself in your bump or your own body weight. After all, mere oz make a difference, creeping up past 1lb and hopefully towards 2. Do you have another appointment before your scan on Wed? I'll be thinking of you.

Dear ladies,
I am going to make this my last post. Scan today showed reversal of flow in the umbilical cord. Final stages of deterioration it seems. She had gained 50g in the last 10 days and so now estimated at 560g. After speaking with the neonatologist we decided not to deliver today, we felt it wasn't the right thing to do for her or us. I know that not everyone would do the same and I hope nobody is upset by our decision. We are now at home waiting for the inevitable which might be 2 days or 2 weeks we don't know. I feel a strange kind peace as things have gone downhill much faster than we first thought they would but being so little and so young has made the right path obvious to us.
Best wishes to all those who continue their IUGR journey.
X

Hey clabsyqueen. I'm sorry it wasn't good news and you had to make such a hard decision. Wishing you strength and peace.

Clabsyqueen, I am glad you were able to reach a decision that is right for you. I'm very sorry that it wasn't meant to be, and wish you all the very best. xx

Oh, clabsyqueen, so sorry to hear your news, please take care xx

Hi sixer, wishing you all the best for your scan today.

Thank you so much Willbean. It's all still stable, remarkably, though there is a very slight deterioration in the placental blood flow. I have one more weekly scan next Thursday, but have now been booked for c-section on the 20th June - when I will be just over 34 weeks. We had a look around the NICU which made it all seem much more real - I think my partner was in slight shock but I'm actually raring to go now. Obviously in an ideal world the baby would stay in the womb a bit longer, but given that it's not I'm quite keen to move on to the next stage and try to do my best to make up for the rubbishness of my placenta in other ways!
I'm wondering whether to buy one of those baby nest things that help to hold the baby's limbs to its body - I've read that this helps to recreate the feeling of the womb, but also help to channel the baby's energy into growth rather than uncontrollable limb movements. Did anyone else find this sort of thing necessary or useful please? Also, are nappies expected to be taken in?

hello sixer, glad to hear things are going well, 34 weeks would be great.
the nurses used rolled up towels which were obviously quite old and so really soft from repeated washing, they laid them in a little 'u' shape, and fitted our little one inside to keep him feeling secure and cosy.
we also used soft t shirts that we had worn, so it obviously smelt of mummy/daddy and wrapped it in a similar way. we put a soft toy that had been nestled down my top for a day into the incubator for a more homely feeling. we also put a photo of us on the side of the incubator! but then we didn't have much time to prepare so hadn't researched or bought any special stuff.
we didn't take nappies in, they had all the 'micro' pampers ready, and when he was very small the nurses weighed the used nappy to keep track of how much was going in/out.
completely understand the shock, its quite a rollercoaster, whats your expected weight now?
keep in touch if you can.

Dear ladies on this thread,
I am tentatively writing this post as we are still hanging on in here at 27+1 and est. weight 600g the last week has undoubtedly been the worst of my life. After going home with reversed flow on Friday and preparing myself for a stillbirth I had a big bleed on Sunday night and went to UCH expecting the end to be soon. Anyway after 4 days in the hospital, steroids shots and dopplers showing reversed flow no longer present (at least for now) we are now home waiting for a scan on Wednesday next week. I have accepted that this could turn out in many different ways but if we do end up with a baby in NICU it would so nice to have you ladies to talk to. My main goal is to keep the panic attacks to a minimum between now and then. A big challenge. Wish me luck.

Sixer10 I am so glad you are still hanging on in there. 34 weeks is as good as full term if you have a good unit. You must be so relieved. I am so pleased that things have stayed stable for you. Our doc said that if the rate of growth stays the same ie minimal then she is better off out at 28 weeks rather than staying in. I hope she manages a bit more. Good luck x

hello clabsyqueen, nice to hear from you, sounds like a difficult time but you still have hope. Have been worried about you, and wondering how its going.
my little boy was born at 28 weeks, at 780g, and is now running around throwing stones in the garden and now you're not far behind us!
will keep everything crossed for you and sending you lots of warm wishes and good luck xx

Hi clabsyqueen nice to see you on here again, I have been thinking of you too. Sounds like an incredibly difficult time as efeslight said. I wish you all the best in keeping the panic in check until Wednesday. Sending positive growing thoughts to your little girl.

Sixer 34 weeks will be amazing! What's the estimated weight now? My son had one of those little nests provided by the hospital, maybe your unit will have them too? They also did the rolled up towel thing. Nappies depends on your unit, we were in one that provided them and one that didn't. Pampers do prem sized ones and Nature babycare too I think? How exciting that you are planning for the birth! I was really excited when my son was born too despite the circumstances. I just wanted to meet him!

I was encouraged to put breast pads in the incubator with a bit of expressed milk on, they said the smell of it would be comforting. Hopefully at 34 weeks you will be able to have lots of cuddles very soon anyway. So pleased for you.

Clabsyqueen, it's wonderful to hear from you again; it's obviously been an absolutely hair-raising experience for you, but so brilliant that you are still hanging in there. Each of the last 2 weekends I've spent having minor panic attacks at hospital - first one thinking my waters were leaking, second one with reduced fetal movement - so it does seem to me that managing our own emotions is the biggest challenge in all of this. Meanwhile our babies are just getting on with it....
I didn't have the complete measurements at my last scan to get the estimated weight, but on the 27th May we had an estimate of 1099g. I've bought some sleepsuits for 2 - 5lb - assuming they won't be worn to start with anyway. Thanks willbean and efeslight for your insights on the nicu, it's incredibly helpful to hear. Clabsyqueen, please do keep in touch. I'm thinking of you lots.

Hi sixer,
1kg!!! That is absolutely brilliant. It sounds like you have also been through the mill, but as you say baby is hanging on in there! My little lady is kicking away today after a quiet one yesterday. I have to admit to just keeping very quiet and still and thinking it's for the best if she has gone, heart breaking to do this every week. I keep looking at people getting on with life drinking a coffee, having a glass of wine and wonder if I'll ever be able to do that again. Scan tomorrow. No sleep tonight. Thinking of you x

Hi sixer, brilliant that you are over 1kg. You must be counting the days until the 20th.

Clabsyqueen thinking of you today, best wishes to you and your little girl.

Hi ladies, back from scan with mixed feelings (of course). Blood flow slightly worse but relatively stable. Some growth but minimal - now 630g estimated. The gain in gestation (28 weeks on Saturday) is encouraging but the extremely low weight is worrying. Back to the couch for deep breathing and box sets of DVDs until next scan on Tuesday next week. Exhausting!

You are being fantastically brave about it. 630g is definitely progress - quite similar to me at 27 weeks in fact. As I understand it, the key is just that there continues to be growth, however small, despite the blood flow issues. I hope you have a really gripping box set to keep you going till next Tues! Another scan for me tomorrow, to confirm if we can go on till the 20th, or whether the c-section needs to be brought forward to next week.

hello, clabsyqueen, lovely to hear you're both still hanging on, keep up the good work!
sixer, sounds like you're doing well, and know a little more what to expect now. Good luck for the scan tomorrow, have you got your stuff ready? camera, comfy pjs etc?

Hello ladies. Hope all is well today sixer.

Clabsyqueen it's great your little girl is still growing, and almost 28 weeks is good news. What are you watching to pass the time? Take care x

Scan today was ok, but it's left me feeling quite negative, I can't quite say why. We saw a different consultant, who seemed altogether much more worried - repeated the doppler several times, and asked in a concerned tone whether I'm happy with the baby's movements (how happy am I supposed to feel, about how much movement??). I think the umbilical blood flow has worsened, but I only saw that on the report afterwards. Meanwhile the consultant has scheduled another scan for Tuesday next week, and I think we probably need to be prepared to be kept in. Anyway, good news is that the baby still seems to be growing: now 1400g. I think I'm probably just letting the stress get to me; I'm really quite keen for the waiting and worrying to be over now. Sorry about the moan. I need to distract myself with something - Clabsyqueen, pls recommend a boxset!

Hi sixer, it's upsetting when you see different people and they interpret results differently. I only noticed today when reading our latest scan that we again have reverse flow in the umbilical cord but this was verbally reported as "slightly worse" as opposed to "the end is near" interpretation of 2 weeks ago. Am again preparing for the worst as opposed to hoping for the best.
1400g is a great weight for your little one - you must remember how far you've come since first posting. It probably seems like a lifetime. I'm in the middle of watching Battle Star Galactica but only because my partner chose it and it keeps him on the couch long enough for me to put my head on his chest!

Hi sixer, I think you are entitled to your moan, you have been incredibly strong and patient. I found in NICU that some cons were much more optimistic than others. They were all very good so I think it was just their manner, but I don't think they realise how a difference in tone can upset you. If they were very concerned you would have been kept in. Now you can pack your hospital bag and look forward to meeting your LO.

Sorry to to hear about the scan results clabsyqueen. As you know better than anyone these things can change for better or worse from day to day. The waiting must be very hard. Do let me know what you think of Battlestar Galactica, DH wants to see it but so far I have vetoed!