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.

Sorry, Clabsy, you asked where Eleanor sleeps. To be frank, primarily she sleeps on me as I try not to nod off sitting upright! But we do settle her in the Moses basket occasionally. We use one of those head-bumper things that you may have already bought as an insert to the size 0 car seat (if not, the sunshine kids one we got from amazon is good), and once she's tucked in feet to foot with that at her head, the space doesn't seem to swamp her. I put a pillow under the mattress to raise it up so it is less far to drape a hand over to comfort her in the night. And Sometimes I swaddle her if she's very unsettled, using a small jersey blanket (following demo on youtube).

Oh poor Charlotte, and poor you. I hope the antibios do the trick. DS had suspected NEC after birth although never confirmed, and the antibios did the trick. All those weeks getting strong will have put Charlotte in a really good position to fight this.

Wishing you all the best.

Hello all, news is that the gut specialist from GOS says that it's not NEC. I'm torn between being relieved and upset as she does not escape the intensive treatment of long line, nil by mouth, 3x antibiotics as once it's started it has to be finished. The conclusion is: iron supplements for anaemia= constipation, anaemia= raised heart rate, imms= raised levels of infection markers in blood. Result=total panic in the doctors!! Totally exhausted and stroppy with the nurses but have finally accepted our lot and stopped crying on everyone.
Sixer sounds like you are having a whale of a time with the sleeping arrangments ;-) I cannot wait to try out the various arrangments you are experimenting with. Thanks for the description - gives me an idea of what to expect. LO now weighs 1.5kg I still cannot imagine taking her home so small. How is eleanor's weight?

Oh clabsy how stressful, poor Charlotte having to go through all of this. Thank God it's not serious NEC though. How long is her course of antibios? How is she doing with her breathing?

And poor you it must be so frustrating after coming so far. 1.5kg is a great weight. I hope Charlotte is feeding and back in her open cot soon.

So sorry that you and Charlotte have been through that on the homeward straight. It's like having the rug pulled from under your feet. I found it very hard to come down from the stress and adrenalin-rush of something going wrong and I did the wrong thing in pushing that feeling down and putting on a brave face because I had two older DCs at home and didn't want to worry them.

I hope you have lots of people to talk to about how you're feeling, as well as coming on here. Crying on the nurses sounds very healthy!

Hi ladies, LO still very much in no mans land. Antibiotics finished and long line still in as she struggles to resume feeding. Weight doing brilliantly as you would expect with a long line - 1.8kg. Something to be grateful for, also she's not in pain anymore and breathing unaided. For 3 days they have tried every combo of feeding to kickstart her guts. Hourly/2 hourly/4 hourly/breast/tube. All milk is returned undigested. Could be a matter of time or maybe some damage done during the episode last week (NEC resuspected!). I am seriously thinking of resorting to prayer! And I'm a bloomin' atheist! 10 weeks in today. Give me strength!

Hi clabsy. Hope you are hanging in there ok. Any milk kept down yet?

Thinking of you and Charlotte.

Hi will bean, we are ok here. Milk seems to be being tolerated but has taken 11 days. Up to 3 hourly feeds after 7 days. Tummy blew up - got an an x ray and a subsequent flouroscopy (barium enema type thing poor love). Anyway finally can say no bowel damage so no surgery needed ('at present' they always like to add). She is full of air they could see. We are Slowly building up the breastfeeding after her third blood transfusion perked her up no end! I'm so jaded by all the medical procedures. I think that the breastfeeding is exactly what she needs as she passes wind continually throughout which must be a relief for her and it really helps her bowels to open. So much better than tube feeds. I am going to push for demand feeding soon I think. Weight gain has dropped off as you would expect with the stop start feeding regime. Not worrying about that as she seems huge at 1.9kg! I hope to have THE NEWS we all want to hear sometime soon but her 12 week injections are on Tuesday next week and they seem to love going nil by mouth and giving antibiotics at the drop of a hat! let's hope not.

Hi Clabsy, I left a message for you last week (or thought I did - I can only think I must have entered it at the bottom of some other random thread which will have caused some confusion! Sorry. The gist of it was that I have been re-reading this thread and noting your incredible patience and bravery. Charlotte has shown great strength of character too, pressing on through all manner of obstacles. Eleanor is just lying across my lap having 'enjoyed' a tummy massage (she doesn't mind it really) which really seems to help with the inflated abdomen. Clockwise rotation below the belly button (although the area is too tiny to stay entirely below the navel) with both sets of fingers: left hand moving in a constant circle applying particular pressure on (her) lower left side, where the colon ends. Then when the left hand is at 5 o clock the right hand jumps over to start at 9 o clock and do a half circle in tandem, then coming off and repeating when the left reaches 5 o clock again. Holding calves together and pressing knees into chest repeatedly often produces a pleasing volley of gas also (oh how my pleasures have changed!).

Oh sixer! How reassuring to hear that we are not alone! We have learnt to 'play the charlotte' over our first 12 hours at home! Yes!!!! Home!!! Pushing knees to the little ones chest does indeed produce some fabulous sounds and resulting relief in the little lady.

I have also discovered the incredible range of sleeping noises she emitts. So disturbing that I left her with dad and slept on the couch. I'm sure it's meant to be the other way around. Our stay in hospital has made it very easy for me to sleep without her!

Fantastic news that Charlotte is home. I always felt we started afresh from then on. Enjoy your noisy, no longer toasty-headed(?) daughter.

Oh clabsy congratulations! I have just shed a little tear at this news. How far you have all come, and you have had such a tough time. Well done Charlotte you amazing girl. Hope you are enjoying her.

We have just done a little dance for joy for Charlotte (slowly, obv, cos of the reflux!) How are you finding it now? Do let me know your current sleeping arrangements - ours are even now a work in progress; latest novelty is the introduction of the car seat. And how are you finding the reception of strangers when you take Charlotte out? Do you enjoy the attention or find it annoying? Hope you are enjoying feeling properly close now. X

Thanks for your well wishes ladies, youve been here all the way. Makes me very emotional actually when i reflect.
Hi sixer - how am I finding it? Very very hard indeed. Not much in the way of pleasure I'll be honest. Glad to have her home obv but it's hard hard work. Managing the reflux with constant holding/angling, managing the constipation and wind with hourly tummy massages (feels like hourly anyway). There are very few moments when she is not grunting for some reason.

The drugs/vitamins I have to give add up to 14 syringes per day. Exhausting and usually leads to a vomit if I get the combination wrong.
Little lady did not settle in Moses basket so now using the lower portion of a phil and teds double buggy. A sort of baby holdall if you will. Have put a snug inside and then swaddled her. Breaking all the SIDS advice I know. She only weighs 2kg and needs to be cost I think.

(cosy that was) A car seat sounds like desperate measures! I have taken to putting the baby holdall on the bed next to me(OH in living room) so I can see/touch her easily and interpret her grunts more easily. Am posting short messages as she is on my chest and may demand attention at any minute.

Strangers: not been out much but if so she is usually in a sling strapped to my chest or dads chest. Have had a few horrified looks (she has yellow skin from TPN jaundice but blue eyelids - not a good look) but usually lots of coos. Everybody thinks she's tiny but they can only see her head (25th centile) it's her body that is shockingly small (0.4th centile). If only they could see! Am worried about producing milk and growth today. She is gaining weight but slowly and has very erratic eating habits. Community nurse has suggested putting nutriprem powder in her night time bottle ( given by dad to help keep me sane). she has also said I mustn't stop expressing until she she is 2.5kg. It's very stressful trying to guess if she has finished feeding or is going to wake up ravenous.

Phew. Im sure we will get there in the end and by 'there' I mean a contented grunt free little lady. Oh - meant to say our best night sleep was had when I bought a White noise app for my iPhone and played it to her. She loved the Doppler ultrasound option! Went into a trance! Then I panicked about having a phone near her head whilst her brain is developing. Never ending worries!

You are well ahead of me - only discovered White noise (she prefers pink actually, which is more industrial-sounding - not a flattering reflection of my internal body noises!) last week, after a horrible day of inconsolable crying. Impressed that Charlotte's head is so big - Eleanor's is still on the 2nd centile.

I hope you have a good support network nearby, or at least some company while you are working out the 14 syringes. I am having real problems also at the moment determining when a feed should be over - when the hungry cry turns to an overfull, reflux cry. I feel so terrible when I get it wrong, and she has 3 hours of pain that sometimes sets us up for a whole day of it. It's going to be a major celebration when we are grunt- and curdled-milk-free! In the meantime, a mum told me that the feel good hormone released by breastfeeding /expressing is also responsible for making you feel thirsty - so I have been trying to note that when I am breastfeeding and thirsty it's because I am blissfully happy!!

2nd centile for head sounds like your little lady is nicely in proportion. Charlotte's head is causing some serious trouble in the arduous physical challenges being set for her: she can't bring her head with her when lifted by the hands and she can't turn it when lying on her back! We've got some serious work to do but I've also been told she must not waste calories on exercises at the moment so she gets to lie indolently on my chest for most of the day (she is actually very cute when not grunting/straining/lolling - I make her sound like a monster!) In my quest for contented sleep for the little lady I continue to disregard SIDS advice and have put a pillow in her Moses basket. She LOVES a pillow but getting the right angle to stop reflux is tough. Syringes are now down to 8 a day! And yes I have lots of lovely family to fetch/wipe/hold/burp. Couldn't have coped without them As OH very busy at work.

Meant to say I totally sympathise with the challenge that is interpreting cries. It has taken me 3 weeks to spot the "I'm tired and just want a cuddle" cry. Up until then I was practically force feeding her thinking she was hungry but couldn't quite latch on! Oops. Poor girl.

Will bean, efes light... All the ladies on here... When did you wean your little one? I swear my lady seems interested/almost ready! Only weighs 5lb4oz but it won't be long im sure. She is 4 months actual in 1 week.

Ooooh, weaning!

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!