parents who have had a premature baby

[charlie1611]

Hello,
I am currently a 2nd year Midwifery Student and I am doing an unmarked presentation to my peers on Tuesday regarding the implications of a premature birth.
I am wanting to steer away from what the text books say about how parents and family members feel and ask people their own feelings having experienced a premature birth. Whether this be that the Drs planned to bring baby early or not. If anyone would be kind enough to share their thoughts and feelings. It can simply be 1 word or a short paragraph. How you felt at the realisation that your baby was coming early, the first time you saw your little one, first visit to SCBU. Anything you feel comfortable sharing will help greatly. All comments will be presented anonymously.

Thankyou in advance xxx

One word - terrified. Ds was born early due to IUGR from pre-eclampsia, had stopped growing and had an absent Doppler so the decision was made for a csection that day. He was only 6 weeks early but weighed 2lb odd. Honestly I blamed myself and my body for being unable to carry him properly.

The birth was surreal as I never got to see him, only this tiny blue-ish skinny thing being passed over me as he was whisked away to NICU. By then my bp had gone through the roof and I was kept under observation with medication and unable to go and visit him. Partner at the time did and brought me down a photograph. Eventually about 12 hours later they wheeled me up to NICU to see him. All the machines are pretty overwhelming and scary for a parent I think with alarms going off, the wires attached to their little bodies. I cried, and cried and cried, remember feeling like he wasn't mine. All the doctors and nurses had taken over the jobs I was meant to be doing if that makes sense. That was the feeling that most presided over the next month he was in.

Good luck for Tuesday.

Thank you so much for sharing your experience. What you have provided is just what i need! It has definitely given me some things to think about too in terms of my practice and the emotional side of caring for a woman and her family in such a situation. I hope it didn't bring back too many memories for you.
Thankyou again

Me too, terrified. I was hospitalised from 19 weeks and had lots of horrid drugs to get to 29 weeks by which time I was in a high dependency unit and very poorly.

I was counselled every week by a one of the lovely consultants about chances of survival/levels of disability which obviously improved as my stay went on.

Amnio on the day showed an infection and I was given the choice of having a go at a natural birth or going straight for a c section. I asked the perinatologist what he would tell his wife to do - c section it was as the baby's heartbeat had been slowing to 40 on contractions. I had a general as the epidural didn't work and didn't see her for three days.

All truly hideous, I was 100 miles from my home and on another continent to my family, lived in a charity house for her 3 month NICU stay.

My husband made a very short video to show me about an hour after she was born, he was so very excited to be a dad, I was absolutely horrified, my worst nightmare in the whole world, I had never been remotely ill all my life and assumed I would just have a normal healthy pregnancy.

I didn't feel like my baby was mine until 5 months after her birth (2 months at home by then) when she finally learned to breastfeed - it always felt like she was on loan.

The staff at my hospital were absolutely amazing. We are still in touch (Christmas cards from both parties and a letter/photo from us) with the NICU and the wonderful nurse who looked after us at our first GP practice until we moved house. I will always be grateful to them.

My ds was born at 35 weeks - so not really early, but he wasn't well when born and whisked off to SCBU immediatly. It was awful - I was allowed to see him before going to the ward, and then just left sitting on my bed, crying because he was there, I didn't know what was going on. I felt abandoned by the staff as although I'd had a fairly significant blood loss (over a litre) since I didn't have a baby with me I didn't get checked. If I wanted to see him, I had to take myself to SCBU (and I was very weak and wobbly), and they wouldn't take me even the first time - it wasn't on the postnatal ward so you had to go through all the ward, out, down the corridor, wait to be buzzed in etc.

It wasn't till day 3 when a SCBU nurse who had had prem babies herself actually took some time to talk to me about what was going on, sorted out a pump for me etc.

I'd have loved for any of the midwives to have acknowledged that it was a very worrying time, to have talked me through the logistics of having a baby on SCBU (like you missed your meals, no drinks on SCBU, how to express milk in the night), and to have checked that I was OK physically.
I also felt completely abandoned when discharged, and a de brief on what had happened in birth and to ds would have been great

Actually, just thinking about it, I never saw a midwife - consultant care all the way through so please ignore me as I am not sure my post is relevant OP.

I did receive the very best of care though.

CMOT's experience sounds almost identical to mine. I just felt lonely - who wants to sleep on a postnatal ward with five crying babies when theirs isn't with them?

I felt incompetent, compared to the deft way that the MW changed DS's nappy and handled him, when he was the very first baby I ever held. It took me quite a while to even feel like he was my baby ("fake it til you make it" was v good advice)

Guilty. Guilty that the reason my poor baby was being forced out of his safe, comfortable environment into the cold, harsh world early, is due to my failure. Guilty about every discomfort and pain he should have been spared had his mother's stupid body not failed him. Guilty that any lasting effects or hardships due to his prematurity will be all my fault.

I was on bedrest from 15 weeks and on hospital bedrest from 23 weeks to 28+2 when I delivered my little guy. Thankfully he is doing amazingly well which does help with the guilt.

I was prem myself (8 weeks early in 1975) and that weirdly helped; I was fine so DD would be fine kind of thing. When I was told I'd have to have a cs I cried, I was scared, but once DD was in SCBU I knew she'd be ok.

I think I was also hugely lucky with the staff; on the postnatal ward I was in a room with other women with babies in SCBU and when there was only me left and they needed the beds they found me a visitors room to sleep in. The staff on SCBU were great and gave lots of support with bf/pumping etc. I never got any food though as I was never on the ward to order it so lived on ready meals my DH brought in that I microwaved in the kitchen on SCBU.

Panic stricken when I realised I was in premature labour.
Calmer when a consultant explained that at that gestation DC was likely to be OK after a stay in special care.
Panic stricken again and shocked when he arrived very unwell and had to be taken straight to NICU.
Helpless when I saw him for the first time as he was wired up in NICU incubator, and I could only watch and watch and try to express milk.
Sad that I didn't have him on the ward with me.
Relieved when I held him on day 3.
A bit more useful when he moved into a special care cot on day 5 and I was shown how to change him and put milk into his feeding tube.
A bit of a nuisance when I wanted to ask any questions - not saying the nurses thought that - just how I felt.
Very upset when I was discharged and he had to stay. Awful unnatural feeling.
Hopeful but cautious as he moved rooms towards the exit.
So happy when we got him home and I could start being his Mum properly.
Eternally grateful for all that was done for him.

Honestly I don't mind thinking about it now Charlie as he is quickly approaching his 7th birthday. I'm astounded at how my little tiny baby has come so far.

The midwifery care I received was fantastic. Going by others posts what helped a lot was they put me in separate room rather than the general postnatal ward with the babies as they knew that would upset me as my baby wasn't with me. I even had a mw fight my corner when a doctor was complaining I wasn't producing enough milk, she told her to lay off me as my body had been through a lot and I was trying my best. I was discharged 5 days later but was told at the time I could stay a bit longer if I wanted, they had the beds. It is horrible leaving without your baby as MintChoc said, going back to a house with new baby cards and balloons but no baby in your arms. It feels very strange and the house feels empty.

I am also so grateful for the care ds and myself received.

I felt numb. I think I said 'oh bollocks' and just went blank emotionally. I shut everything down and realised I had to get on with it for her sake. I remember doing the opposite of labour visualisation, trying to smooth out the ripples in the pond - to try to make the antilabour meds work, but they didn't. I remember logically and deliberately breathing extra deeply and quickly whenever her hr fell to try to get as much O2 into her as possible. My xh (having such a sick child ultimately ended our already rocky marriage) was out in the waiting room with our DS (2) and I mainly laboured alone. The staff were amazing - in such a situation how they treat you makes a huge difference as to whether you can cope. And if you are treated with kindness even a traumatic birth can be bearable and even have positive aspects. My mw was only 5 weeks less pregnant than I was and she was lovely, stayed with me after delivery sorted out maternity pads all sorts of things, held my hand as she wheeled me up to nicu to finally meet my daughter. She was wonderful, and v upset. They gave me my own private room to avoid the postnatal ward and they kept me in as long as possible to make it easier to see her each day. As for the birth they paged the head of obstetrics to deliver dd on the weekend. We'd last met about a week before to agree a water vbac. My dd turned breech as they scanned her and I was asked what I wanted to do, I asked what they would do, and everyone told me to have a cs. I agreed without hesitation - realising quite clearly that this was never ever going to be a healing vbac with ridiculous whale music type affair. She was 27+3, apgar of 1, 1lb 15 at her smallest, her birth was utterly silent apart from my husband crying, and the squeak of the hospital clogs as the paed ran off to get her onto a ventilator. I never saw her. She was so small I couldn't see her in their cupped hands, I got a picture later and cuddled that all night and prayed and prayed. Weirdly after birth I was in much better shape than first time round where I ended up in HDU due to a huge bleed. But I couldn't get to her til 8 hours after she was born when they realised I wasn't going to sleep til we met. When we met she was tiny, her skin was red and translucent, she had no buttocks, just a hole at the end of her torso for her bum as she was too skinny for any extra fat at all, she was hairy all down her back. She was beyond anything I'd ever seen. I was shocked by her. Utterly. But I knew from the instant I saw her I loved her more than anything. Life didn't return to normal for the next two years. A prem birth is just the start of a very long, gruelling journey which leaves a lot of scars. But 3 hospitalisations, 100 days as an inpatient and 60+ outpatient appointments with 5 different consultants I think we're out on the other side.

How you felt at the realisation that your baby was coming early, the first time you saw your little one, first visit to SCBU.

Realisation the baby was coming early: I was scared but also realised there was nothing I could do about it and I was going to have to give birth. I was nearly 34 weeks and knew the statistics at that stage were pretty positive. Went into "coping" mode, lots of adrenaline, possibly in shock I think. The birth itself was ok (DD 34 weeks, born after PROM) and we were well looked after.

First time I saw my little one: When I saw DD she looked like she had Downs syndrome or some other chromosomal issue. (Not just me, the doctors agreed and ordered genetic tests). So that was a massive shock especially as I'd had a clear CVS. I'll be honest I think I rejected her emotionally for several hours. I didn't want to go and see her. (As it turned out, some days/weeks later, she had no chromosomal issue and her face had just been very badly squashed from the birth.)

First visit to SCBU: after my initial reluctance, this was quite positive because 1) the doctors were becoming more positive about her not having a chromosomal issue and 2) I realised there were much smaller, sicker babies in NICU and DD was one of the luckier ones.

I was able to start expressing right away which made me feel a lot better, like at least I could do something for her - I really feel for prem mums who struggle with this.

3.5 weeks in SCBU: draining but ok. Some feeding issues not very well dealt with in hindsight, but in general the nurses were lovely and the hospital was great in letting me stay in a private room for 10 days.

Coming home: Felt like a triumph initially but quickly became very stressful as she wouldn't wake enough to feed - this lasted for several weeks. Would only sleep on me. Exhausting and worrying. Very lonely as I couldn't take her out much (mid winter and snowy, plus it was very difficult to get her to feed and sleep enough). Seeing other women who had had non prem babies and were having a "normal" newborn experience made me feel worse. Came out the other side within 5 months or so however and will forever be grateful that she wasn't earlier or sicker.

You can immediately spot the 'new' parents on NICU because they look absolutely shell shocked.

My waters broke at 28+6 on a Friday night, pregnant with twins. We went to hospital where I was in labour on and off. On Saturday night the contractions got quite strong and I remember telling the midwives at the desk 'if this is going to happen you're going to have to talk me through this because I haven't read up on birth yet, not done any reading on it and no clue how to deal with it all. They told me how to breathe through a contraction and got one of the neonatal doctors to prepare us for what was about to happen. Monitoring of twins HBs is notoriously difficult and in the dead of night they struggled to find the second HB. The MW swiftly organised a scanner and an SHO and all was well. On Sunday the obstetrician decide I wasnt in labour (my uterus felt nice and loose apparently) and transferred me to the antenatal ward where I could get a private room. That Sunday night the contractions again were quite strong and I felt really constipated. I was sitting on the toilet bending over in pain and something had come out, which popped back again, I was in quite a bit of pain but I thought I was just really constipated (I know that sounds strange in retrospect), I mentioned it to the midwives, although I was too embarrassed to mention the something coming out bit. They confirmed that constipation can be really painful, but they couldnt give me anything for it. I went back a couple of times to the MWs because to me it just didnt feel right, what was happening down there. At one point they did decide to put me on the monitor, again they couldnt find the second HB, after some deliberation between the 2 of them they decided they had seen 2 HBs. (Dear student midwife ... if you cant find a second heartbeat, get a scanner, dont rely on the monitor, the risk of picking up the same HB twice is too big. I know its a faff and youre tired and you probably want to go on a break but the impact of not establishing the second HB is too high) Number 1 had always been down really low and now all of a sudden she was up high, it didnt make any sense to me, but the MWs said that they were so little they could easily move around, which again didnt make any sense to me because my belly looked like vacuum packed meat, you could feel the undulations of their bodies. That early Monday morning (at 29 weeks gestation) something came out that felt like it wasnt going to go back, I finally woke up my husband and told him to go get the midwife. Shift change had just happened, the new midwife took one look, exclaimed in a bit of a panic oh my god youre crowning, dont push and pushed the emergency button. My life, after she pushed that button, will never be the same.

At one point I couldnt not push and she came out. The neonatal doctor was already in the room with us. I wasnt aware at all that she wasnt crying, my husband realised immediately and started crying for her. The only thing I could think of was oh my god that felt so good ... after all that tension in my body all of a sudden releasing. I didnt get to see her of course, she was immediately whisked off to the neonatal doctors who, as far as I was concerned, were going to sort it all out. there were so many people in my room at this point but a female obstetrician came in and it was immediately clear she was in charge. She said I was going to be transferred to operating theatre, just in case. My bed was bouncing off the walls of the hospital, they couldnt get me there quick enough. I should have noticed from their faces, especially the midwives, that something was wrong but it still hadnt twigged. Half way through a new face appeared at my travelling bed, the anaesthetist, sweat was pooling on his brow. In the operating theatre I was scanned and it turned out number 2 was transverse, the obstetrician tried to turn her, which was successful but she ended up with the cord below her body which would be a problem for delivery, so she suggested a CS. I was happy to go along with it all, its weird how you have ideas about how you want your birth to be and then when push comes to shove you just roll with it all. At this point No 2s HB started to drop and they decided an immediate CS, under GA, no time for an epidural (which made the anaesthetist sweat even more). The neonatal doctor showed up at this point, at my right hand side, and started telling me that they tried everything for my daughter but to no avail. On my left hand side they were trying to get me to sign a flippin disclosure form for the operation! After that I was quite happy to be put under.

I woke up a couple of hours later and felt like I was still pregnant. I knew I had given birth, but I still had this big belly and there was no baby. The bereavement midwife showed up and asked whether I wanted to see my (dead) baby. I spent a lovely couple of hours holding her, I fell in love immediately and there are some lovely photos of me looking completely serene holding her (possibly aided by the diamorphine I was quite upset when I realised it was on unlimited supply!). At about 9pm I went up to NICU and saw her for the first time. To be honest she didnt feel like my baby, she was all wrapped up in towels (outside the incubator), so many wires and the enormous tube in her mouth. It was all so unreal. (I did fall in love with her quickly though and developed a guard dog parenting instinct for her ;-)).

We were in NICU/SCBU for six weeks and six days. Not that I was counting of course. Every day when I walked back home from hospital I would look back and be surprised that the hospital was still there, so much emotion is balled up in that place that I am always amazed that it doesnt implode from all that hurt, grief and negative energy, leaving behind a crater in the ground.

As soon as we came home and I made sure we thoroughly enjoyed our time, and we still do. After all, you never know how long it is going to last.

I was terrified to find out that dd was gearing up to arrive 5 weeks early but by the time I went into labour at 35+5 I was just relieved that she was coming out as I was petrified that the infection they had identified would damage her.

The first time I saw her was seconds after her birth but by then I was becoming quite unwell and I didn't hear her cry, nor do I remember anything of her first night.

I felt completely panicked by the time we reached the SCBU. I didn't really understand what we were doing there and I was totally intimidated by all the equipment etc. around us. A pp described all the new parents as being shell shocked and this is definitely how if was for me. However, the staff were amazing, encouraging me to take breaks and look after myself too. Whilst in hospital I was placed in a private room so that I didn't have to be around all the new Mons and babies. It also helped to speak to other parents in the SCBU who we're going through similar experiences.

I felt distraught when I was discharged and dd was kept in. Also felt totally unprepared for parenthood, the nursery wasn't ready, I hadn't yet started maternity leave and I hadn't even finished my NCT classes but the parent craft offered by the SCBU as well as the opportunity to 'room in' the night before she was discharged made the world of difference.

She's been home a couple of weeks now and already it feels so distant it could have happened to someone else.

ELCS at 36 weeks due to IUGR. She measured 32 and weighed 4 pounds.

Overwhelming emotion was guilt and still is. I failed her.

britneyofarabia.blogspot.ae

My son was born at 33+5 by emcs mine was due to health problems not related to pregnancy he was born 7.40 pm I'd had a messy csection they fitted me in last on the list and had an argument over me in theatre about why I wasn't being left for the night staff I had a ga. I was in a bad way before and after the c section all in all was in hdu for 5 days nearly all the the midwifes in the hdu where amazing when I woke I was screaming in pain delirious I thought I was hemoraging because all I could feel was blood gushing out of me like water but I could talk and they kept sticking the oxygen mask back on my mouth the only person who realised I was tryna tell them something was the lovely midwife who pulled back the covers and saw I was lying in a pool of blood. Even though they wheeled my bed round to the nicu 6 hours later to see my son and then was brought back my son's father was going to his dad's funeral the next morning so had to leave around 12 am my mum stayed with me all night. And went to see the baby cos I couldn't and was still in a bad way. My son was critical that night and no neonatoligist told me or told one of the nurses or anyone wouldn't give my mum information I found out 2days later. After 2 days still in hdu they called my neuro surgeon he came over (different hospital) they was trying to get me moved he told them I wasn't having the operation I needed while my son was so ill and they said well we think postnatal wise I was fine he explained to discharge me home then and they'd keep my comfortable because psychologicaly I needed to be with my son whilst he was like this I later found out I was discharged with an infection which bloods on the day I was discharged showed but they still discharged me. My community midwifes where amazing they came to my house weekly from 29 when I was constantly in the nicu they'd turn up to my house if I wasn't there because I'd forget through all the stress the appointments they made, they'd go straight to the nicu take me to a side room exam my botched csection and act like it was not problem I'd forgot my appointment they where lovely and just wanted to make sure I was ok

What I'm tryna say is although under consultant led care the hole time and they knew from what they told me that it might end up an emergency situation they was not prepared and most of the midwifes did make me feel safe and where lovely. But to be honest they should have gave me a tour of the nicu they said they was gonna 5 weeks earlier but it never happend the 1st time I saw a neonatoligist was whilst I lay on the operating table. And all they said was do I have a preference on formula the hole thing was very scary and not managed very well

Shock - genuinely I had never considered the back pain I was having at 27+4 could have been labour.

Distress - Drs told me they'd try to stop the labour but they'd be here with the next 48-72 hours.

Born at 27+6 - numb / distress / panic stricken but almost as if it was happening to someone else. Gave birth naturally to both babies (although Twin 2 was breech), but I didn't react well to pethadine (spelling?!) so don't remember much of it. Just that I remember seeing something that looked like Morph (you know the little plasticine character on Tony Hart's art programme - probably way before your time!) - the colour of liver, tiny - being whisked away. Going to the intensive care unit seeing them attached to all manner of wires, Twin 2 on a ventilator and it was almost like watching TV - that it was some sort of programme, not actually happening to me. Waking up on the ward that night, just my H and I (they'd let him stay) with no babies with a massive bump still and it was like it hadn't happened.

After that, guilt, fear, worry, like I had to ask for permission to hold them, touch them, feed them. That the nurses were better parents than me. Jealousy of other parents who'd had a "normal" birth, I felt angry at people who were congratulating us on the birth because we didn't know whether they'd make it. Devastated at having to leave them behind in hospital when I was discharged. Sitting in the empty nursery at home sobbing all night.

Ongoing issues - that nagging doubt for the first couple of years whether they would have been affected by their prematurity, always looking for the next milestone, worry that they weren't doing something at the time they should have been doing it. Probably rushing those early months, eager to get to the next step, not really taking time to enjoy it. Guilty - being blinkered about breastfeeding (because they needed to be fed as if they were still inside me), feeding (had to be organic / home made etc etc) shutting out H / my parents / friends because I was so obsessed with making them healthy / trying to put right their early birth.

But now - recognise we got the best care in the world. Amazing, amazing care. Quite active in local charity for prem babies and parents.

DS2 born at 29 weeks as a result of duodenial atresia. He had a bleed on the brain, three small holes in his heart and Down syndrome.

I didn't realise I was in labour, waters broke on the way to the hospital, ds2 born in one big woosh. I had my eyes closed for most of the time in delivery room but the one main memory that has stayed with me was a midwife?/nurse? constantly calling for a plastic bag for the baby." A plastic bag, a plastic bag", that's all I kept hearing and in my heightened emotional state I kept thinking that DS2 was dead and that they were going to put him in a Tesco carrier bag (not sure why Tesco but that was the image I had).

The other thing was that they kept saying, "this baby that, this baby the next thing" and from the depth of my lungs I bellowed, "his name is DS2".

I would say that as a trainee midwife, even if the baby is your main concern, be careful about what you say and how you say it.

DS2 is now a very healthy, happy 8yr old but I still feel sick when I remember thinking about the Tesco plastic bag.