Hand holding from anyone with similar experiences would mean the world to me....

(124 Posts)

Hello,

So on the 8th Feb I had an emergency c-section as I had pre-eclampsia which rapidly descended into HELLP syndrome. My pregnancy was at 26 + 6 weeks, this was my first pregnancy.

My little girl is currently in high dependency in the neo natal unit, she is doing pretty well, has come off the ventilator and is on C-Pat, she weighed 750g (1lb 10oz) when she was born and is just so unbelievably tiny!!

I'm posting for so many reasons and if anyone could offer advice/suggestions or a friendly 'sort yourself out' then I would just hugely appreciate it.

Firstly, I feel dreadful, just shocked, scared, like I have somehow failed her by being unable to carry her to term and although I appreciate this is probably normal, I just don't know how I'm supposed to feel. I go to the hospital and I'm not sure what Im meant to 'do' and I just end up feeling awkward and out of place and then I'm worried if im not there I look like I don't care, which I obviously do. I just feel like I'm gong through everything on autopilot and it's just not sunk in.

Secondly, expressing - I m doing my very bestest to express every 3 - 4 hours, through the night and everything and I'm still only getting 10-15 ml on average. It feels like nothing, when will milk 'come in' any tips?? It's so hard with the machines.

There are I'm sure a million more things buti can't think of anything that seems important!!

Thank you

Jenny

clabsyqueen Mon 20-Feb-12 22:26:23

Hi lamb, wow - your posts have made me realise how many ladies go through the tough icu ride before they get their babies home. My little lady was born at 28 weeks weighing 660g due to a rubbish placenta. Guilt by the buckets if I think about it at all but I try not to. I really believe that it will only come home to roost for me if I ever carry a big fat healthy baby.
We spent 12 weeks 3 days in neonatal and I honestly thought it would ever end. My daughter is now 8 months actual (5 corrected) and weighs 5.5kg. Doing very well. No different from any other 5 month old except that she is tiny on the charts.

clabsyqueen Mon 20-Feb-12 22:32:08

What are you supposed to do in neonatal? Nothing!!! Just be there to start feeling comfortable with your little lady. I didn't hold my LO for 3 days and what helped was a nurse who forced me to do it. After that I tried gone more assertive and it was the best thing I did. Hold your baby as much as you can. I have to admit it was stressful sometimes - rubbish chairs/stroppy nurses/screaming huge babies but this nurse made me really believe it was the best thingcould do for her. No one else will hold her the way that you can/do.

clabsyqueen Mon 20-Feb-12 22:39:06

Sorry for typos. Using a handheld. Your baby will never remember the time in neonatal so don't worry about that. I would also say try to be patient about the bond between you. I saw my daughter as a 'job' for a while. She was just so tiny - only 4lbs on discharge. It was only when she was slightly more robust that I felt I could really cuddle and play with her. Well, I could go on FOREVER about this topic. Sorry! Stay strong and most all be patient ( not my forte) it sounds like she is doing well but there are always ups and downs in neonatal ( we were sent back to intensive care after 9 weeks!! Arghhh) take care

Hi clabsy thanks for sharing, I too am surprised how many people seem to go through this. Since I had her, the number of people with comments like "oh yeah, my first was born at 27 weeks" has truly surprised me. I really think the media and other people need to stop perpetrating the myth that you will have a perfect 40 week pregnancy and a easy, normal birth where you will bring your child home after around 6 hours. I really feel like that was what I was led to believe, I NEVER expected this.

I have been holding her, your right, I know that no one else can do it, it kind of feels like my instincts are wrong though, I want to stroke her and kiss her and mainly pick her up and take her home. I know I will get there, it doesn't feel like it right now though.

Can I ask about the actual and corrected ages, which one do you use? I'm assuming corrected is how old is she past her due date? We will of course be celebrating 2 birthdays smile but with regards things like development, do they look at corrected age? I can't help worry about her development along with everything else.

leftmymistletoeatthedoor Tue 21-Feb-12 10:32:11

I haven't been through this but wanted to wish you and your dd all the best.

My ds's friend was born at 26 weeks. She is now the tallest girl in her P1 class and is lovely and bright and healthy and adorable.

circular Tue 21-Feb-12 14:11:45

Also wanted to wish you well.

I have been through it, DD1 is 14.5, born 28+1, 875g. Small for gestation as a twin.
Very poorly to start with, 10 days fully ventilated, a few weeks on C-PAP, then oxygen right up until coming home. 110 days in hospital in all.

My info may be a little out of date.
I only got to hold her once or twice while on the full ventilator (ond not at all for the first few days), but once that had gone, there were much needed cuddles daily. And DH and me did all the nappy changing and feeding when we were there.

Expressing was one thing that came very easily, but I know I was luckier than most there. I used a hand pump, every 4 hours night and day.

With regards to the age adjustment, she was adjusted by 3 months right up until her 18month check at 21 months, then the correction stopped. This was for most milestoes, except going onto solids which wass somewhere between the two ages, as the gut would me more mature than the gestational age.
I recall the hospital saying as a guide that those around 27/28 weeks adjust up until age 2, those 23/24 weeks can ba up to age 5.

There was a really helpful book that the hospital had, written by parents called 'Born Too Early' that explained things very well, in layman terms. Not sure if that's still around.

Although you may not always feel like it, get lots of pictures / videos. We wish we had more in the early days. DD1 not over keen on looking at them, but our 9 year old DD2 finds it absolutely fascinating. We recently came across a 'hat' that the nurses made, out of gauze and tape plaster. It is slightly larger than a ping-pong ball.

And, just for the record, DD2 was 3.86kg AND 3 days late !

crazymum53 Tue 21-Feb-12 14:45:46

Reading your post rings a bell as I remember feeling like that when dd was born prematurely at 27 weeks (plus 1 day) weighing 1 lb 7oz. I had pre-eclampsia too and this seems to be the case for a high percentage of such births, particularly with a first baby. Doctors do not know what causes pre-eclampsia - other than it often runs in families (not in my case though) and is more common for a first pregnancy. So basically nothing you have done could have caused this to happen or prevented pre-eclampsia from starting. The only "cure" available is to deliver the baby as soon as possible.
Does your hospital have a parents support unit or counsellor you can talk to about how you feel?
My dd is 12 years old now and has no memory of being in NICU now - she doesn't like hospitals though so perhaps there are hidden memories there. She is bright, lively and doing well at school. Hope you find this encouraging. wish a forum like this had been available 12 years ago!

clabsyqueen Tue 21-Feb-12 19:36:58

Hi lamb, I think that someone posted about corrected ages a bit earlier - we use her due date (corrected age) to work out her age for judging how her development is going. This continues til age 2 as far as I know. Weaning however does use their real age because the tummy has been digesting since birth and so is more mature and prem babies really need their protein and vitamins. Breastmilk although fabulous is designed for fat full term babies who have laid down great stores of nutrients in the womb. It is sometimes not enough for prems (esp the growth restricted ones like my lady) so don't feel bad or be surprised if the docs add a supplement (fortifier to your milk) and you will definitely come home with a list of vitamins and stuff to keep your lady healthy! We had a huge chart which is finally reduced down to vitamins and iron in the last few months.

crazymum53 Wed 22-Feb-12 10:42:21

For more information about pre-eclampsia you may wish to contact Action against pre-elampsia APEC see link for leaflet APEC.
It is a good idea to keep expressing as long as you can and it sounds as if you are doing well. At the moment your baby will only need small amounts of milk so you are doing fine but agree that it is not easy. Even mothers who have had a normal full-term birth find it hard to establish breast-feeding after a C- section so this is another factor to bear in mind. Hope this helps.

Poppet45 Wed 22-Feb-12 11:04:21

Hope yesterday went well Lamb - was DD's half birthday and i still cant believe we've made it through a 6 months like that. clabsy ahh the meds chart that's soooooo where were at right now, 11 syringes of 5 different meds a day here. And we had the fortifier for the milk too and some formula top ups when she first came home.

CelticPromise Wed 22-Feb-12 11:22:04

Hello lamb and congratulations. You have had great advice so I won't add to it, just wanted to say that I ended up taking domperidone to up my milk supply and it worked. DS was born at 27 weeks weighing 1lb 4oz, spent five months in hospital and came home with oxygen. He's 2 now, a bit behind but catching up all the time and expected to be completely normal.

Best of luck to you. Any NICU mum can relate to how you are feeling. It's tough but you will come out the other side.

Mandy21 Wed 22-Feb-12 13:04:25

Hi, just wanted to add my story - I went into labour completely spontaneously at 27+4, they managed to stop it for 48 hours but I had my twins at 27+6, each weighing 2lb 6oz. I was always told twins would come early, but even when I got back ache that morning that was "coming and going", it NEVER once occurred to me that it might be labour. I think when its your first pregnancy, you don't know any different. I too completely agree with the issues of feeling guilty - think that took a long time to go away and made me quite protective / obsessive about their care in the early days because I subconsciously thought it was down to me to do all that to somehow make up for the fact that I hadn't been able to keep them inside for longer. I also felt at the very start that they weren't my babies - the fact that I didn't know how to handle them (I was so concerned that I'd hurt them - they seemed so fragile), the fact that I had to ask if I could have a cuddle / do their cares etc - just felt like it was happening to someone else. That does get better, honestly, as you get to know your baby and you become more familiar with the unit.

We spent exactly 2 months on the unit - they came home at the equivalent of 36+5 although they'd told us to expect it to be their due date. I remember thinking that was 3 months away and just sobbing. A lady I got to know who had a baby on the unit (a term baby but who'd had the cord wrapped around his neck) came to tell me after a week they were going home and I just crumbled on the spot (in a kind of why can't that be me way). I think its so emotional and whilst it is very hard to deal with that, its entirely normal!

So top tips (for what its worth)
1. Keep a diary - there will be days when you'll have a seemingly backward step but it helps to look back and see how far she's come.
2. For the expressing - agree that you have to do it a couple of times during the night and as often as you can during the day. I also found that having something that smelled of the babies massively helped (sounds bizarre but I used to sniff the little fabric goggles they'd worn when they were under the lights, or the little hats they had) and spread photos of them around the bed. Also, eat. That was my consultant that advised that its not the quantity of liquid that you take in, but the quantity of food which aids milk production. I used to have almost an extra meal when I woke up to express in the early hours. Persevere - I think it helps you emotionally / abates the guilt a little bit etc. They were completely breastfed before they came home, and carried on until they were 1 (I hired a double electric pump for 2 or 3 months until I had time to get going with a hand pump).
3. Be there as much as you can - you feel in the way to start with, but I was lucky to stay at the hospital for 3 weeks with them - sat next to the incubators all day. Got to know the staff, they got to know me, and it was fine. Also meant I felt more involved / understood the decisions that were being made about them and that in some ways made me feel more of a mummy. Does your unit have a parent room - can you ask to room in? Our hospital had a parent's unit where there was a little TV room, a kitchen and bedrooms that were used for rooming in. Meant you could get away from the actual unit and have a coffee etc but still be at the hospital.
4. Your DH - it is SO hard for them, they do feel helpless, feel like they have to be strong for you but at the same time, coping with the situation themselves. We really struggled, but as with everything, it gets better with time, just keep talking. My H used to go and sit with them / do cares each Saturday and Sunday morning, which gave me a bit of a lie in and chance for him to see whats going on.
5. Have you been on the BLISS website - charity for prem babies - has a forum where you can post questions and lots of links to explain things. There also might be a group in your area - I went to my local one and found it was really good.
6. Don't beat yourself up about whats happened - it wasn't anything you did, try not to feel guilty, just think that she's here now and you can be the mummy she needs. Take each day as it comes - of course you're desperate to take her home but think of it in weeks - I think my first aim was for them to get to 30 weeks with no issues, then 32 weeks etc.

My twins haven't had any issues at all associated with being prem - caught up with all development milestones by the time they were 2 and we were signed off by the hospital. Now almost 7 - both at the top of their class. We still take them back to the hospital each Christmas to take a tin of chocs for the staff - one of them
said quite early on "why do we come back here mummy?" (no recollection whatsoever).

Good luck - keep us posted. (Sorry that got so long!!)

Congratulations! We're now 14 months down the line from my son arriving at 26+2, so I completely understand what you're going through. I'm not going to do the emotional stuff because others have covered that really well (although do check whether there's a psych or priest who comes round to NICU if you want to talk - there was at St Thomas' where we were), but here are some practical tips:

* Eat porridge, flapjacks etc to stimulate milk production. Also try the Neuner tea bags from Expressyourselfmums - actually quite tasty.
* Express loads, unfortunately. I used to come downstairs in the night and watch comedy shows on mute with subtitles just to make the whole thing slightly less gruesome. Oh, and Top Gear blush
* I couldn't hand express at all, made me feel sick. I found the hospital pumps the best thing, and ended up hiring a double Medela one for about a year.
* The usual tips for looking at photos etc didn't work for me at all - I found the best thing was to switch off and go elsewhere whilst expressing, just relax a bit. Reading fanfiction on my Blackberry for some reason worked blush
* As much kangaroo care as you can! Whilst in hospital we couldn't do a lot as my son couldn't keep his temperature up, but I got a Kari Me wrap sling and carried him everywhere for a few months when we got home - gorgeous way to bond.
* Talk to the nurses. Take notes. Stay on top of what is going on.
* Fight like a tiger for your baby. That is not my tip - our neonatologist put that in a book on Prems, but it is completely and utterly true. You already know your baby the best, do not hesitate to speak up for her.

Best of luck!

Oh, couple of other things!
* A bit of chocolate just before you express. I was told a sugar boost was useful. And it worked!
* Get all of the Bliss leaflets. There was one in particular about communicating with your prem that I found really useful - how to tell when they were distressed etc (e.g. yawning, hiccups). You can download them online, or our Unit had copies.

Message withdrawn at poster's request.

Poppet45 Thu 23-Feb-12 17:23:56

How are things today Lamb?

Hello, not got time to reply to everyone but huge thanks for all the stories and lovely messages, will have a proper read later tonight.

Not had a good day today, she has an infection in her blood and they are really worried about her bowel/tummy, it is distended and she has not had a proper poo since birth. They are treating her with a second course of antibiotics for her infection and she had a platelet transfusion earlier today. They are continuing to give her suppositories but if they don't work she will likely have to go to Manchester for further investigation/surgery.

I'm feeling really low and fed up, no matter how much they warned me there would be bad days I'm a bit overwhelmed by it.

Poppet45 Fri 24-Feb-12 11:27:47

Oh hunny I'm so sorry you're going through such a tough time. The infections are terrifying - Willow had to have a lumbar puncture for suspected meningitis at one stage and i was so so fearful for her. The bowel issue is a real worry too after 3 weeks without a proper poo, are they worrying about nec? Sending you all positive thoughts.

efeslight Fri 24-Feb-12 11:34:11

Hello again lamb, sorry to hear you're all having a bad time at the moment, hopefully the antibiotics will kick in swiftly and some pooh will appear - is she weeing ok? the anti biotics made my little boy swell up, just fluid retention, it was terrible to see him look like he'd been beaten up, but it went down after about a week... thinking of you x

beckyboo232 Fri 24-Feb-12 11:52:58

Hi just want to add my story and support. I had my son at 26 weeks a crash c section after my placenta ruptured, we both nearly died. Like you I felt on auto pilot for what seemed like forever what made a huge difference to me was the kangaroo care, ds had numerous infections and as soon as I put him on my chest his heart rate would calm right down, he knew who I was and I knew no one but me could do that. Expressing is hell isn't it? Well it was for me though eventually my supply came in I found a glass of tepid water to sip helped and I didn't bother trying to hand express the electric ones were more painful but better. With regards to the other parent I found the same no one really talked but now I regularly meet up with several parents from neo, we were just all so scared and shocked at the time we were not able to help each other. My son fought 4 infections including septicaemia, had 3 operations on his stomach and bowel and now is a happy healthy 3 year old who doesn't believe me when I tell him how tiny and sick he was smile I kept a diary with photos and notes as well partly for him and partly to help me remember all that as said. Thinking of you (((hand held)))

Poppet45 Sun 26-Feb-12 16:46:30

Sending positive thoughts to you all.

clabsyqueen Sun 26-Feb-12 20:39:28

Oh gosh, stay strong. Keep going. Take every day as it comes.... and a million more cliches you might not want to hear but PATIENCE will get you through this. Distended tummies, antibiotics, transfusions and suppositories were all I thought about for months. Even on the day we were being discharged I was asking for a suppository for my lady and comparing her belly with photos I'd taken on it a week earlier.These little ones have so much trouble with their tums that it's hard to believe they will ever be normal. I couldn't give my lady a bath for at least 2 months after coming home because there was so much air in her belly that she would tip upside down if she wasn't held down by the ankles. Too stressful! Getting older is usually the answer to all the tummy troubles but it feels so painfully slow and the docs have to follow up every tiny thing 'just in case'. It's sooooo hard to stay positive. Thinking of you!

So, SHE HAS HAD TWO POO'S!!! grin I never, ever thought I would be so excited about poo. DH changed her today and got the second one, he was so chuffed, it was adorable. It was all a bit worrying over the last couple of days, there was lots of worry about nec yes poppet but it's looking better now, although they are still testing for it. Her tummy started bothering her and she was starting to get distressed but all seems to have subsidised now smile

Thank you beckyboo it's really reassuring to hear all these lovely stories and also that this is not going to scar her emotionally. Expressing is a nightmare but I think I am getting somewhere,

Thanks for all the tips penguin I can definitely get on board with chocolate before I start smile but it was actually really useful to hear that someone else is better not doing the whole pictures and focus on her thing. I am better just reading and letting it work as I am more chilled, it is noticably more fustrating and I produce less if I am stressing about it. Spoke to my GP about potentially percribing something to help and she said there are no medications for it hmm but i am seeigmg a different one next week.
Can I ask how you fought for your baby? DH and I are concerned that they are constantly trying to feed her even though she has never kept it down and just produces dirty aspirates, I have asked why they are doing this but am not really satisfied, surely she isn't ready for it, she wouldn't be 29 weeks yet.

H efeslight she is weeing fine, they did mention the swelling might be down to the CPap and lots of air in her tummy.

Think I'm getting my head round it all a bit more now, im not feeling great, my section scar is infected and painful and my back and bum are causing me all sorts of bother sad sleeping is a bit of a nightmare but really the least of my worries.

DH is back at work now which is making it even harder for him, thanks Mandy I asked I'm to go on his own tonight and I think it was good for him (and he got a pooey nappy) and I got a little break. You are right about the diary, i have been keeping one and it's a good place to vent I find too.

This thread is so useful and fantastic, thanks so much for your all your replies and help. It has meant so much to realise I'm not the only person to go through this and that they often come out the other side unscathed smile

CelticPromise Mon 27-Feb-12 21:56:38

Hi again, how brilliant she has pooed! I remember getting so excited about DS's first poos.

With the feeding, their guts do mature quicker than term babies and your milk will help this to happen. With DS I am pretty sure he was managing tiny amounts of milk by about 29 weeks. Hopefully the poo is a sign things are getting better.

When you see the GP ask specifically for domperidone. My GP hadn't heard of it being used for milk supply either. It's an anti-sickness drug normally. I've also heard it's available over the counter but I've not tried to buy it myself.

Hope your little one continues to do well and that your scar heals soon. All the best.

clabsyqueen Mon 27-Feb-12 21:58:30

Yay! Great news on the poohs! Must be a big relief - for everyone!!!

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