Any advice regarding IUGR babies would be greatly appreciated

[owlsandbadgers]

Hi,
Am currently 31+3, diagnosed with early onset IUGR (cause unknown) at 21(ish) weeks.
Since then have have regular scans where baby has frequently gone below the 5th centile. She went to the 7th once but then tailed off again! Today we had another scan and baby has now gone below the 4th. Her femur and HC are measuring fine but her abdomen and her weight are below the 4th.
Today they gave me steroids and we have to go back tomorrow for the second lot along with a CTG. We then have to have another CGT and meeting with the consultant to check blood flow on Monday. They are rescanning again in 1 week to reassess delivery etc. They said they could deliver today but won't as blood flow and her movements are very good.
I am desperate for her to go at least a couple more weeks preferably 35/36??
Has anyone had any experience of something similar? I'm so frightened that she will be this early and she will have serious difficulties (breathing/feeding etc).
Also the thought of her being in hospital for a long time and me having to leave her (i have a DS) is making me feel so sick!
Sorry for the essay... thank you for reading and listening to me vent!
thanks in advance!

Hello, sorry am on phone so may be brief. I am sorry you are gong through this - my pregnancy was almost identical to yours except the blood flow was very poor. My son was born at 32 weeks but was the size and 'condition' of a 28 weeker. I would say the fact that the blood flow is good is a fantastic sign. Really great. It means that at the moment it is better to be pregnant than not. If things change you need to be prepared for an emergency c section - not as scary as it sounds when you are not in labour. It is a worrying time but with each day that passes the baby is gaining size and strength. If you can get to 34-35 weeks then she will probably only be in hospital for a couple of weeks if no other problems. She will be just fine. Staff in special care are wonderful. Just because she is early doesn't mean she will have breathing difficulties necessarily - have you been offered a tour of nicu\scbu? I didn't get a chance but I definitely feel it would have helped me worry less. My son is 4 1/2 and starting school in Sept. He does have special needs although I will never know if being early caused them or not. I know of a number of premature babies with no special needs whatsoever. X

Thank you for your reply, I had an emergency section with my son so the thought of a quick section doesn't worry me too much. At the moment she is weighing 3lb, so it would be great to get her a bit bigger.
I haven't seen the nicu yet but am going back tomorrow so will ask.to have a tour. I hadn't even thought of that so thank you!
if you don't mind me asking how heavy was your son at birth? They offered us an amniocentesis today again for the second time, luckily for me my OH and I agree on that side of things so we were able to dismiss it very quickly. Did you know a cause for your sons IUGR? Sorry to bombard you with questions!
X

Hi there, he was 1.21kg. We had no cause for the IUGR - the local midwife had never heard of it so luckily we had care at St Thomas' and ended up having 4 scans a week. One thing I personally think which has no medical basis at all was that a few months before I got pregnant I suffered really badly with gallstones. Many attacks, could hardly eat anything - i lost 4 stone in weight. I feel that I was probably malnourished and so the placenta wasn't good enough quality. Probably wrong but i can't help but feel this.

In terms of breathing he breathed unaided after a couple of days and would have continued that way but got sepsis and ended up on cpap for 7 weeks. He was really unwell but this is not necessarily due to IUGR - just one of those things. I know it is so scary but the care is truly amazng. It was very difficult at the time but days or weeks later it was forgotten and we just got on with our lives. Best of luck - rest up as much as possible. We should have been told this but were not! Feet up all the time! Xx

Hello, my dd was born in April at 31+5. She had IUGR and had to be delivered as I developed HELLP syndrome. She weighed 2lb 10. I had the steroid injections at 28 weeks and dd was breathing on her own within 10 minutes of birth. She was in the neonatal unit for 4 weeks and 4 days as she needed to gain weight and learn to suckle. She has been home for a few weeks now and is doing very well. They suck reflex doesn't kick in until about 34 weeks so dd was fed with a tube for a couple of weeks and then started taking a bottle. She is now breast fed but will take the odd bottle of expressed milk.

If you want to breast feed, you will be encouraged to express.
31 or 32 weeks is a good gestation. Apart from dd being small and needing tube fed, there were no other concerns. She was never ill when in the neonatal unit - she just needed time to get heavier and get to grips with feeding. All the best with your little one - all the scans and monitoring is very stressful.

Hello, my ds was born at 29+6 with IUGR - he weighed 2lb 2 (970g). He was in NICU for 6 weeks and came home when he was around 1.5kg. He will be one in a few weeks and now doing well! He's a bit on the small side still, but catching up. We ended up back in hospital just for one night as he had to have hernia repair at around 42 weeks but that went fine and we were home the day after.

Similar to you his head measurements were ok for dates but other measurements really low. They told us this as good as he was prioritising his brain. I had a big fibroid, high blood pressure, lots of bleeding throughout pregnancy. Ended up in hospital from 26 weeks (when they did the steroid injections as I had contractions) then they did a bunch of CTGs every day and scans every other day, and when it looked like he'd be better off outside I had a c section.

I would recommend doing a tour of the NICU so you know what to expect. I did a lot of expressing milk which was hard work but once he got to 34 weeks and established feeding I was glad I'd done it. It is really hard work especially as you have another child at home but the NICU staff are amazing and can work miracles. Sounds like your doctors are keeping a close eye on you. Really hope it all goes well and do let me know any questions xx

Hi, thank you both for your replies, it's all gone a bit mad here, they found an abnormality in the blood flow today so want to get her out sooner rather than later. We are Going in daily now at 10am for ctg and monitoring. As soon as a space in nicu is available they will do it. It would have been today but two sets of twins have arrived so no space!! She is moving well so don't want to transfer me to another hospital, just waiting for a space. No eating after breakfast each day so we can just get it done when they say, I'm feeling so scared, I'm 32+3 and she is only about 3lbs. I don't feel ready for this and wish my body would just work and keep her safe for longer x

Will be thinking of you! You will both be fine - she will be tiny but perfectly formed! Have you visited nicu? X

I had an IUGR baby last year. There was a marker for a problem with blood flow at the 20 week scan but she was a normal size then. They rescanned at 28 weeks and she had dropped off the bottom of the chart. They then kept a very close eye and at 33 weeks decided the situation had deteriorated to the point where they advised getting her out as soon as a nicu cot was available. I had the steroids and she was delivered by section at 34 weeks exactly. She had a few hours of cpap but no ventilator. She was fine, just small (3'6 at birth). She was in hospital for 3 weeks and 1 day. I hated every day of it and couldn't wait to get her home.

She is now 10 months and has just crawled across the floor to eat her dad's slippers. So she's gross but all seems well!

Thank you for your positive stories, monitoring went well today, we have been told it's unlikely a space in nicu will be available tomorrow so just back for more monitoring in the morning. Wednesday is the latest they say they will leave her so it feels like a count down now. Haven't seen nicu yet but will ask to tomorrow. Is there anything I should take with me in particular? They have know she has been growth restricted since 21 weeks, and keeps tailing off the chart xx

Our midwife suggested that before she arrived we sleep with a little toy for her to have in the incubator, so she would have our scent when we were not with her. I've no idea if it made any difference to her but it gave us some comfort.

Once your baby is here my top tips would be:
-don't forget to look after yourself, particularly if you want to breastfeed or express. Hospitals are usually not great for good and drink so somehow make sure you have plenty of calories and liquids. It is easy to forget when you are focussed on the baby and not in your home environment with everything on tap.

• do skin to skin as much as you can. Our baby visibly calmed, her breathing slowed, etc when she was in one of us. Look up the benefits of kangaroo care. Some nurses were much better than others about helping us to get her out of her incubator. Some were just too lazy to bother with it, frankly! Which is a shame because it brings considerable benefits.

Hi I would recommend getting some meals in at home as it is so tiring commuting into the hospital and you need good food. Also if you are expressing you need to express round the clock every few hours so that gets very tiring. I found ice packs useful for transporting milk to hospital, nursing bras, lansinoh, healthy snacks, cake, hand cream (as you have to wash your hands a billion times to go into the NICU). Try to make friends with other mums and the nurses for support. Don't feel guilty about anything (I did - I now realise that was silly). Take care of yourself xx