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.

[WillbeanChariot]

Special care! Wow that is spectacular, she is one strong girl. Well done on the expressing clabsyqueen sounds like you are doing brilliantly. It does sound like you are settling in, you get into a weird sort of routine don't you? I read about the cup feeding too but only one nurse ever did it with my son. We were there so long I felt I had to pick my battles but as it happened my son latched happily on to nipple or bottle so we were lucky. I did try to resist him having too many bottle feeds. They had particular sorts of teats for the breastfeeding babies that helped (this all happened at our second hospital rather than UCH- they may do the cup feeding there I'm not sure).

Sixer I can so relate to how you are feeling. I wept all the way the first time I went home. There is nothing you can do but get through it. I hope it won't be long before your little girl is home with you. Have you been able to sort a pump out?

[EyeoftheStorm]

Have been lurking on this thread and so pleased to see the girls have arrived and are doing so well.

DS2 was born at 30 weeks and had tube feeds and expressed bottle feeds until we left SCUBU. Didn't breastfeed until he was almost term and safely home. He was just small and easily tired - the bottles were easier for him and once he grew, he took to the breast.

I worried and worried about nipple confusion and there was no need. Ladies, you are doing brilliantly with expressing. I'm really rooting (no pun intended) for you and your DDs.

[stillfrazzled]

So glad she's putting on a bit of weight, and I know what you mean about starting to feel like a mum. She's in no doubt already, BTW - I bet her heart rate and breathing slow and oxygen rate goes up when you hold her? DS2's vital signs changed quite a bit during kangaroo care, it was amazing.

[clabsyqueen]

Eyeofthestorm - this thread has had some lucky breaks so far. Long may it last! How long was your LO in SCBU?
To all the ladies on the thread - what was the going home weight of your LO?
Charlotte update: 10g weight gain yesterday but food increases have stopped as she needs a bit more time to manage 2ml an hour.
Still frazzled - during KC she does show better control of her vitals, breathing is her main one as she has a tendency to hyperventilate but this slows down on my chest however today we had cuddles for almost 2 hours and she stayed awake for almost the whole time! I was very perturbed. I thought they were supposed to fall into a blissful sleep and grow lots rather than strain to see my face for 2 hours! My OH says I have bad breath maybe that's why she didn't sleep :-/
Feeling slightly traumatised by the whole event today if I'm honest. The weeks of scans, the waiting, the worrying, the operation, the almost didn't make it feeling. Just had to leave OH in a restaurant and come home in tears. He can't really understand why I'm not jumping for joy at the way things have turned out. I feel like I have just returned from war or something! Tell me it fades.

[sixer10]

I am completely with you - my partner also couldn't understand yesterday why I had tears dripping off my chin on an hourly basis, given that the news has remained positive. Crying does seem to help my milk supply though - I also managed 80 ml last night, whilst in full flood. Eleanor is on 3ml hourly tube feeds, plus her drip. She has been so bushed the last 24 hours she hasn't repeated her latching on and sucking - I think the first priority is rather to get her off the drip as soon as she can tolerate full milk feeds. The transfer to Kingston was fine in the end - she slept through it, and Kingston NNU, because much smaller, actually seems more homely than Tooting, where I would have felt I was leaving her in a very harsh medical environment. Kingston have also lent me a pump after all, which I am slowly getting the hang of after Tooting's super high tech ones. Brilliant news that Charlotte has gained a little weight - hopefully she won't look back now! And it must be a sign of her alertness and determination to get to know you that she has been staying awake to look at your face, though I love your OH's alternative analysis - I say keep the bad breath coming, she obviously loves it!

[clabsyqueen]

Glad Eleanor is nice and cosy closer to home (?). 80ml is incredible at such an early stage, well done you! It's a nice feeling to get milk, I try to remember to be grateful for that each day as some women have such difficulty and it must be heartbreaking. Glad I'm not the only one sobbing over my pump but it is quite cathartic actually. There's a lot of emotion waiting to get out!

[WillbeanChariot]

Hello ladies. Glad the news continues to be positive. It can be hard when your other half is not on the same page emotionally. Another mum said to me very early on that even if your baby is doing well you are mourning the loss of your healthy pregnancy and I think that is very true and maybe hard for men to understand. If you need to cry, it can be cathartic as you said clabsy. Both of you have had a very traumatic time, maybe there is a little bit of relief there too.

I had a different reaction, I became relentlessly upbeat and optimistic almost to the point of denial, and so did DH. I think the staff thought we were insane, but I felt that if I voiced my fears I would make them come true.

Clabsy to answer your question DS was 8lb 2oz when he came home, but it wasn't weight that held him back. I think my hospital let them home at about 4lb if all was well.

Here's lots of cuddles and growing over the weekend xx

[stillfrazzled]

Yes, DS2 was 4lbs the day we came home. It was terrifying!

And I'm still up and down and prone to obsessing about weight etc. You're right, I am sort of mourning the loss of a healthy pg and birth and straightforward babyhood.

BUT I do also think that we get a bonus, because I appreciate the smiles and cuddles and milestones even more this time round. Sometimes you have to really search for that silver lining

[EyeoftheStorm]

Clabsyqueen DS2 was in SCUBU for 9 weeks but he had some complications. Bleeds on the brain led to hydrocephalus so that slowed things down for him. It was my experience that small babies who thankfully just needed to feed and grow were out of SCUBU lots quicker. Those with complications took longer but got there in the end. He is 2 now and you would never know how traumatic his start was.

When he was born, I could never have pictured where we are now - it could not be more positive.

With regard to emotions and other halves. All I wanted to know every day was: is he ok today? My DH wrung every tiny detail and prognosis from the nurses and doctors. We are very different and having a prem baby didn't change that. As long as we kept talking and allowing the other one to react differently we were ok.

DS2 was 6lbs1oz when discharged (but a lot of that was his head )

[Millymolliemandy]

Oh my goodness, just returned to check this thread that I started what seems like years ago, and so much has been going on! Congrats ladies on the births of your beautiful girls, this seems to be an all girls thread! Have been keeping very busy with our still very little one Clementine. Just wanted to add that our SCBU didn't have a weight limit for discharge, the feeding and growing were what kept us back, and we were finally discharged at 1545g, so under 4lbs. Reading all about the incredible stress of expressing in the early days has really brought it all back - she was only born 10 weeks ago and I already feel like an old veteran.

Looking forward to hearing updates from everyone.

[clabsyqueen]

Just a quick hello - uneventful here (hooray!). Slowly gaining weight (750gish I am guessing as there are wild variations in measurements depending on nurse). feeding going slowly (as expected) but now up to 3ml an hour -still well within my capabilities for expressing. Getting lots of KC which is just wonderful. Learning that the nurses are all very different in their opinions - use muslins/don't use muslins/lie on tummy/don't lie on tummy/cover incubator with a dark cloth/light cloth... Arghhhhhh! Getting more assertive as I learn about my little lady. Hope you and eleanor are going well sixer.

[clabsyqueen]

Correction: 820g!! Hooray!

[WillbeanChariot]

Hi clabsy glad all is well, that is great news about the weight gain.

I feel your pain about different nurses telling you different things, it used to drive me insane. It can change your whole day seeing who's on in the morning!

MMM congratulations on getting Clementine home. Hope all is well.

Sixer how are things?

[clabsyqueen]

Hi MMM
10 weeks old! Congratulations. A long 10 weeks I'm sure but hopefully the drama fades and life can be quietly peaceful and alarm free! How does it feel to be in charge of a little lady at 4lbs? She is obv doing very well to be sent home whilst still relatively small. I have a feeling it must be possible to grow faster in the comfort of home. Not very scientific! I'm a bit scared I'll have to take Charlotte home while she is still weeny and the whole idea of breastfeeding is a bloomin scary one. How on earth do you know they are taking enough? There's still so much to learn but I suppose I shouldn't get ahead of myself. We are still on intravenous nutrition plus breast milk so she is still high dependency but slowly increasing her intake. anyway, congrats once again MMM.

[clabsyqueen]

Eye of the storm - glad to hear that you and LO have no lasting mental scars from your SCBU time. I think I'm a little more like you in that I have completely avoided talking about future prognoses. I simply cannot think beyond the present day. If I worry about implications for her future I'll go completely mad. All that matters is today she is ok today and is settled and feeding and sleeping well.

[sixer10]

Hello again - everything (well, Eleanor) going extremely well. She is out of the incubator, off the canula, and off all the monitors apart from the apnoea. She can breast feed, to my amazement and delight, even though so small. She hasn't regained her birthweight yet, but is being stuffed to the brim every 3 hours by tube, so we are hopeful that she will now start to gain. Great news of Charlotte's steady progress - what a star! I too have noticed quite different approaches from nurses - one yesterday appeared not to believe in kc, telling me that E needed to stay in the cot, and if she gets used to me holding her she will be more upset at night when I can't be there. I thought actually I would rather that, than that she becomes completely institutionalised and doesn't know who I am!

I'm also a bit worried to hear that with only very rare exceptions, babies tend to go home on a mixture of breast and bottle. I really want to breastfeed, especially as she seems to have no problems with it. I can see we will be in a bind though if it means her weight will drop and she has to stay at the unit longer. Are any of you able to advise please on how easy it is to re-establish breastfeeding if it has been necessary to bottlefeed to get your baby home?

[clabsyqueen]

Hi sixer, a challenge for you both but she seems to be telling you she can/wants to breastfeed. I have read somewhere that bottle fed babies go home sooner but also seen that many go home exclusively breastfeeding. Find the person with the opinion you want!! Charlotte had first setback - an infection. Food suspended IV fluids only. Antibiotics started. Lots of desats :-(
Was told to expect this as it's par for the course. Fingers crossed it's brief.

[clabsyqueen]

Oh and what a load of BS re the KC! Again it's all personal opinion. Twice Charlotte has had a low temp and one time the nurse on charge said let's do KC to sort her out and another said no KC until she has warmed up!

[stillfrazzled]

Was about to post to say how glad I was that it's going so well for both your girls, then saw your update about Charlotte, clabsy. Must be so scary - everything is in SCBU - but if staff aren't worried then hopefully it will pass quickly. I freaked out when DS2 had an apnoea episode but to them it was completely routine.

Re the feeding, DS2 was discharged EBF, as were several babies on the unit when we were. If you ask on this board (I know I've seen or maybe even started a thread about it) you'll read quite a few other stories, too. I don't think it's rare, as long as the SCBU is supportive.

It was frustrating - I came home and wept a couple of times - but this is what worked for us:

1. Making regular attempts, but not every feed as he wasn't strong enough. So maybe every other feed during the day. A long time to spend at hospital, though.
   
2. Trying to feed about 15-20 mins BEFORE a tube feed. So if he took some, great, and if he didn't, tube fed as normal. Also nurses could aspirate and see if he got anything (poor little thing, no secrets!).
   
3. Popping the nipple in when he yawned before he got the hang of latching.
   
4. Feeding skin to skin.
   
5. Rooming in - once he'd got strong enough, they stopped the fortifiers and let me stay at hospital for 48 hours with him in the same room. I didn't do much other than feed, eat chocolate, hold him and read (was quite nice actually). At the end, he'd put on a massive 15 grams so we were allowed to go home. I expect your hospital does something similar - have they mentioned it?
   

At the end of the day, getting home is the most important bit and if it takes a few bottles to get the girls to the point where they're big enough, then that's what it takes. I was desperate to bf, but if I'd been told DS2 would be in hospital for another month if I insisted, I'd have been reaching for the formula without hesitation.

And it isn't one or the other - I've a friend whose prem boy had some breast milk, some formula, and they were able to build up to EBF at home. She does have an older child, though, so I don't know whether it's easier because she'd done it before.

Bit of an epic but hope any of it helps.

[WillbeanChariot]

I just typed a really long reply and MN logged me out and deleted it! Stillfrazzled's tips are very good. I came home exclusively breastfeeding- it wasn't that common at my unit but I was bloody-minded. Having said that it was not feeding that held my son back, so I may have done differently if he'd been able to come home earlier.

Once he would take all feeds orally I demand fed in the daytime and he had bottles of expressed milk at night. I had a stash frozen from earlier times, if I hadn't I probably would have mixed feeds at night I guess. When he still had the tube I sat on the nurses a bit to not give him huge top-ups if he just stopped sucking for two minutes. We ditched the bottles when we roomed in and didn't look back. Good luck!

And your nurse's comments about KC sound bonkers!

clabsy hope Charlotte is doing better today. Infections are scary but they do bounce back quickly. Fingers crossed she will be back on her milk soon.

[EyeoftheStorm]

Clabsy hope Charlotte doing well now. You are on the SCUBU rollercoaster and it's hard to stay on an even keel.

I was thinking that all the DDs on this thread have regal names - Charlotte, Eleanor and Clementine - sure it will stand them in good stead.

Sixer, it sounds like your DD is doing really well with breastfeeding and will hopefully start putting on weight as she grows and gets better at it.

StillFrazzled gives great advice and all I would add is even though DS2 had bottles, it was all expressed. He hadn't had more than a couple of sucks at the nipple in his 9 weeks in SCUBU. When we got home, we went to bed for the weekend, lots of skin to skin and we were there by the end of it. I still expressed for night feeds for a few weeks to make sure he was getting enough. Then we were off and only stopped when he was 14 months.

[stillfrazzled]

Meant to add, your DDs might not actually need bottle feeds - nurses told me they don't get the sucking reflex till about 36/37 weeks anyway, so makes sense to give milk via NG tube and avoids them getting too used to the bottle.

[clabsyqueen]

I know that sixer is there before me but all those posts are brilliantly helpful ladies. Thank you. I have actually started putting milk on my finger for her to suck as recommended by speech therapist. She loves it! Hopefully a good sign. Charlotte infection coming down and she's perked up. Hopefully back on milk tmw.

[stillfrazzled]

Clabsy, I never thought of that - what a good idea. Hope Charlotte is back on milk by the time you read this.

BTW one thing I did forget to post - although hopefully you won't make the same mistake as it was pretty silly: time your expressing and feeds carefully.

One day I spent eight hours at the hospital waiting to do two feeds (DS2 was moved to a four-hourly regime to make sure he was properly hungry and more likely to latch, which might be worth keeping in mind). I was due to express an hour before the second feed, so like an eejit I went off and did it without thinking. Only to have an utterly rubbish feed with DS2 because, I think, I'd expressed off all the foremilk which was easy for him to get and he wasn't strong or motivated enough to get the hindmilk.

I kicked myself many many times for wasting the day and cried on the bus. It's v easy to get burnt out and miserable, hospitals are weird and tiring places.

Hope you're getting some rest away from the hospital, as well as time with your LOs? It's important, however guilty you feel about it.

[sixer10]

Poor Charlotte! Hope she is now back to fighting fettle and keeping you busy with her feeds and finger tasting. I have to say I think you are inspiringly positive, Clabsy. Obviously there is much to be positive about, but talking to other mothers in the expressing room I can see that it's easy to get defeated by the grind and the succession of highs and lows, and complain about the care. I wish there were more like you!
Thank you everyone for all the fantastic advice. Basically I take it that the odd bottle now won't do any harm, or cause nipple confusion - is that the general experience? Because I've been asked today to give permission for them to give Eleanor a bottle at night, when she won't settle, as she isn't doing very well with the cup feeding. I so wish I could be here more myself, as she is learning to breastfeed well, but I am permitted alternate feeds only, 6 hours apart, and I don't think I can manage a 13-hour day at the hospital (it's currently 8).
Good news - Eleanor has regained and surpassed her birth weight now, which I hope means their might be more leniency on the breastfeeding.