Share your stories of giving or receiving support following premature birth with Tu at Sainsbury’s and Bliss this World Prematurity Day - £200 in vouchers to be won

[JustineBMumsnet]

From thousands of Mumsnet discussions, we know that giving birth prematurely can be a major event in parents’ lives, bringing with it a whole host of experiences and emotions that parents hadn’t necessarily planned for - and, of course, sometimes, some really difficult scenarios.

Around 8 in 100 babies are born prematurely according to the NHS - that’s one in 13. While lots of these are ‘planned’ premature births, others are unexpected. As Bliss, the UK’s leading charity for babies born premature or sick, points out, not all of these babies will need to be cared for in a neonatal unit; however, some will need specialist care or extra medical help, meaning that their early weeks can be very hard on their parents too.

Understandably, parents in this situation often need a lot of emotional and practical support, and it’s for this very reason that Tu at Sainsbury’s has today launched their first ever Premature Baby clothing line, in partnership with Bliss.

Tu’s Childrenswear Buying Manager, Melanie Fieldsend, says: “We’re really proud to be expanding our babywear offering to now include premature sizing, in the hope that we can help to support families in this small way through what can be a challenging and unexpected time.”

World Prematurity Day is on the 17th November and Tu would like to encourage you, our generous Mumsnet community, to share the little (or big) things that you found useful when giving or receiving support following premature birth - from sourcing baby clothes to helping with childcare for older children or perhaps being an emotional support when needed, and the things you wish you’d known. If your baby was born premature, what helped you the most during this time?

All who leave a comment in the thread below will be entered into a prize draw where one MNer will win a £100 Tu voucher as well as a £100 Sainsbury’s voucher.

If you’re currently pregnant or have recently had a baby born prematurely and would like to find out more about prematurity and the support available to you, get in touch with Bliss.

Thanks,

MNHQ

Insight Terms and Conditions apply

[OpEd]

There was no support. It was an awful experience and then ongoing MH issues for me and physical for the child.

Terrible memories include waiting to be let into the secure ward for half an hour to see my baby.

The nurses repeatedly failing to order a test so that when the test was finally done the issue had escalated into another stay in NICU.

No support on a subsequent pregnancy.

I don't think I've been the same since, it really fucked me up.

[whereonthestair]

My DS was born 11 weeks early. I had been at risk of late miscarriage but things had settled down. I went to hospital with what I thought was a scare, after earlier scares I phoned my office and told them I wouldn't be in that day, and possibly not the next either. The next phone call I made to work said I was on maternity leave! I hadn't thought I was in labour and it took a doctor to tell me. Less than two hours later DS was born.

The following day my DH's step father went into hospital, the day after that his stepfather died.

The staff were amazing. I couldn't thank them enough. Mainly because they took the decisions away and allowed me to put one foot in front of another.

They told me that they would care for DS, and they were the worlds most expensive babysitters. That I needed to get better and told my parents to care for me so that my DH could care for his grieving mother.

It may sound harsh but it was what we needed. We were traumatised and decision making was beyond us.

My DS was in nicu for a week, and scbu for another 7 weeks. The NHS thought he'd be discharged earlier but after speaking to another friend I advocated it was too soon. The following day DS temperature crashed as he just wasn't ready. That was the first time I had to advocate for DS and it was against the medical director of the hospital who happened to be the consultant at the time.

It was a good experience, as DS is disabled and we are still in the NHS system. But I learnt how to do this knowing that the NHS staff cared and we wanted the same thing even if we didn't always agree.

At the time very premature babies clothes were difficult to buy. I found eBay invaluable.

I was also lucky, I lived less than 2 miles from the specialist regional unit. I could go home to eat, sleep and shower and still spend all day in the hospital. The staff were always very understanding about those who didn't have that luxury.

Bliss were the best source of information at the time. Baby books didn't apply to us... baby groups weren't relevant, and I walked out of the one which said whatever you were going through someone else in the room was in the same position. I don't think so. Our disability issues have now made our path different but I still remember those days.

[Signoritawhocansway]

I had my son as an unexpected emergency at 27 weeks. He weighed just over 2lb and was very poorly. The best support I received was from my bestie, who drove the length of the country after he was born and arrived at the hospital having dropped by our house to pick up pyjamas, clothes, fruit. She stayed with us for twenty four hours and cleaned our house from top to bottom before she left.

Subsequently I received a huge amount of support from our church community. People sent cards and gifts, and knitted premature/dolls clothes for him. I've kept some of those.

I didn't get so many guests with him. I didn't get to choose his first outfit or change his first nappy... It's a hard road to travel and can be lonely. Loving support from friends and family is the main thing that got me through.

[Eyre89]

I was lucky my first ds was 4 weeks early but only 5 days in nicu and 2 on the ward. I am forever grateful I was allowed to stay in hospital the whole time. Being with him and being able to express milk. Then havong support to breastfeed meant when we left hospital we had a good routine set up for feeding. The staff were great. Made a traumatic time alot more bearable.

[JC110]

My son was in 2 different hospitals for 10 weeks. We found the nurses extremely supportive and have kept in touch with many of them over the last 4 years. One key learning point for us is that the need for support does not end when you are discharged from hospital. We happened to have friends going through a similar journey at the same time so found support through each other. Coming home can be very strange as suddenly the 24 hour support you received from the nurses on the unit stops and it can be very isolating.

[Angelfaced]

I don't think anything could have truly prepared me for my son being premature, he was so tiny and in the hospital for a long time although you would never guess that to look at him now as hr is a healthy 3 year old hitting all if his milestones. I struggled to find clothes to fit him as i had only bought newborn but the hospital staff were great in helping source items. As an older mum i struggled so much with the lack of sleep from worry and not being able to hold and be with my baby really affected me. I did however get some amazing support from pandas who were amazing. I think its amazing you can easily buy premature clothing and nappies now so easily it takes a little of the worry away and makes thing seem a little more normal.

[daisy913]

I'm 5 foot 10 and a bit chubby, 21 and at my 36 week scan with my partner, happy that this is the last trek across 2 towns to get a scan, so in we go....baby is small, only 5lb 3 and hasn't grown since 32 week scan (I had a lot of scans from my medical history) so there and then I'm rushed to a side ward from the scanning department and told I'm being induced! I had no idea what any of that meant! A lovely nurse came in explained to me I need to have steroid injections today and tomorrow and then I will be induced, so I have the first, get taken up to the ward and at 36+6 I have a beautiful but healthy little 5lb 3 baby, he was estimated to have many problems having not grown etc but he was absolutely fine and 3 days later.....christmas day! We went home, he was tiny and to this day nearly 8 years later, everyone remembers how little he was

[nailsathome]

It's wonderful you're doing preemie clothes - the ones we had to buy were so expensive.

It was such an awful time for our family. People rallied around for the first couple of days but support dwindled after that. The effect it has on both parents is significant.

[ArnoldJRimmer]

I had my twins 10 weeks early. There wasn't enough room for us in the NICU so we were blue lighted to another hospital. Sadly 1 of our twins didn't live for long and just the following day when room was made in our original hospital we were again moved but this time had to leave twin 1 behind. I still carry the guilt at leaving him behind and I never got to see him or hold him again.

Twin 2 spent 7 1/2 weeks in hospital. Bizarrely, expressing breast milk every 2 hours and getting up during the night to do it was what held me together by giving me something to focus on. Breastfeeding support were brilliant and I made a friend for life in the "pumping room" . We had a lot of hurdles during twin 2's stay in hospital and I found it exhausting talking about it. Family wanted to visit everyday but it was too much for us so in the end had to ask people to keep their visits for the weekends and on Wednesdays. I would have much preferred them using their time making us the odd meal since we were living on microwave food and maybe even the odd bit of laundry.

It was the most traumatic time of our lives and I still feel a bit scarred by it but our surviving twin is an absolute wonder and you would never ever know she was born prematurely

[ConquestEmpireHungerPlague]

My preemie is a healthy 21yo now and a perfect physical specimen if a little on the small side. I wish there was more balance in the way the medical profession approached prematurity once the issues aren't life-threatening. I had the fear of god put into me by my obstetric team, who all melted away disappointedly once he turned out to be normal and healthy, but absolutely zero support with the tedious challenges of feeding a baby with a poor latch and sucking reflex. All these years later I still regret following the only advice I had, which was to do mixed feeding in the hope breast feeding would establish along the way all by itself with no help, advice, support or encouragement to persevere. (Clue: it didn't.) I hope things would be better nowadays, but with neonatal support even less well funded and resourced than ever, I somehow doubt it.

to all on the thread who have lost babies and had dreadful experiences. I know how lucky we were.

[lucie82]

I've had two preemies, my ds was born at 29+0 and my dd was born at 35+0. DS was in SCBU for 6 weeks dd for 6 days. Ds was 3lb1oz and dd 5lb8oz. We had several scares with ds he kept forgetting to breathe so had to gently rub his chest to remind him. Dd caught an infection so that's why she stayed in for 6 days. My son has asthma, and eczema and has recently been diagnosed with autism. Both children seem to be very happy. With my son I lived 45 mins away from the hospital and having had an emergency section I relied on family to take me to visit him. Daughter was a emergency section aswell. Both times family and we're very supportive and the hospital staff with my son were great, however with my daughter I felt that they just didn't care, I was discharged less than 24 hours after having major surgery. Son is 11 years old and daughter is 5 years old.

[RedElephants]

I was 22 yrs ago and 32 yrs off age, a 'geriatric' mum according to the hospital
Ds1 now 22, & 6'4! was 'born' a day early, was 8lb 8oz, wasn't expecting him to be on time, as had been told most babies go over the EED date by a week or so!!
Due to jaundice, spent 8 days in SCBU, firstly on a billi bed, then more intense phototherapy, he was breast fed, with top ups of formula. It was a good 3 weeks before he returned to a 'normal, pink colour.

Ds2 was born almost 4wks and a few days early, he's now 19, again not expecting him, apart from the fact he was early, was glad to get him out I was huge!! And most uncomfortable.

I had gestational diabetes, and he was 8lb 15 in weight! He spent 3 weeks in hospital, as he wasn't feeding well.
Being stuck in hospital, again, with older sibling at home, wasn't the greatest of times, A really good friend of mine, who lived near the hospital, gave me the keys to her house so I could go 'home' and rest for an hour or so between feeding him.
In the end my friend (who's a midwife and delivered him) intervened, and we were sent home.
All went well after that, as I knew it would.

I too, was lucky enough to have great support from parents, sister, sil, all friends.

[Apple35]

I had a premature baby born 7 weeks early on 4/2/20. My baby was in the neonatal unit for 4 weeks. Throughout this time I had PND and got amazing support from the Neonatal team. They saved me having a nervous breakdown.
Finding clothes for ur premmie is hard so it is amazing that TUI are doing this!

[LargeProsecco]

I had a 29-weeker, who weighed 1lb 9oz & spent nearly 100 days in the neonatal unit.

Babies were only allowed to wear clothes when they got to 1kg in weight. I can remember how difficult it was to get clothes; a shop assistant suggested I dress him in doll's clothes. Very few retailers had clothes that small.

The Bliss forum was an amazing source of support for me; I used it when he came home on oxygen & had severe reflux too.

I also had support from the other mums on the unit; we still keep in touch 12 years later & have a very strong bond. We saw eachother through some very dark times in NICU.

DS is now nearly 12 & doing great; he has dyspraxia from his early start but is bright academically & very sporty.

My DD was also early; 4 weeks & in nicu for only 8 days - a much easier journey all round.

I'm very lucky to have my 2 healthy children, and the great circle of friends I made in nicu.

[ThePurpleMoose]

DD was born via EMCS at 34+6. The hospital staff were lovely...the midwife who came in the morning after she was born, got me sitting up and teeth brushed ready for DD to be wheeled down from SCBU for my first cuddle and took photos for me...the HCA (old enough to be my grandma probably) who helped me have my first wash when I could get up and didn't even tell me I was splashing her (why they didn't have a shower screen I don't know!) and helped me get those awful compression stockings on...the anaesthetist who came to see me, genuinely worried that I might have nerve damage because the epidural was so difficult to do (and visibly over the moon that I was fine). And my colleague, who brought us formula and tiny baby vests (still huge on DD but much better than the newborn things she'd been dressed in originally)...my parents, who came and cleaned our house and filled the freezer with meals and cake while I was still in hospital, and my in-laws who came when we were finally home, fed us and held DD so we could nap. Just thankful we all came out of it relatively unscathed.

[NervousInYorkshire]

No experience of having a premature baby, but I was one at the end of the seventies. I was in the papers, and strangers sent my parents dolls clothes and doll sized clothes they'd knitted.

Glad to see Tu are doing a specific range
I do know my parents had horrendous heating bills when they brought me home in winter - my mum sold her story to a woman's weekly mag to help with the gas bill (I've actually just tracked down a copy)..

[EvieRussell]

Our first born was 34 weeks and then became very ill and ended up in NICU. I remember when she was born, the midwives seemed obsessed with hats: I felt ashamed to admit we didn’t have a hat for our newborn. They insisted she needed one. A really kind health care assistant miraculously appeared with a hand-knitted hat. That small act of kindness felt amazing. Someone out there had taken the time to think about my baby and knit a hat for her, before she was even born.

A few hours later, at shift change, the new midwife told me my baby shouldn’t be wearing a hat and that she would overheat. I felt terrible again, this time for using the hat.

I still have the hat. Our baby survived, and thrived. Every time I put a hat on her, be it a wide-brimmed hat on a hot Summer’s day or a woollen bobby hat on a crisp winter morning, I think of that tiny pink knitted hat, and the kind stranger who knitted it.

[Cotswoldmama]

My eldest son was born at 31w 3days. We were lucky that because I was in labour for so long I was able to have steroids to help to develop his lungs and other than needing to gain weight he was fine. It was very hard to leave him and go home at the start but we got into a routine. I got to the hospital for 9.30 and breast fed every 3 hours. My husband finished work and stayed until 8 then we went home and repeated. We did this until I was in transitional care with him. During this time we were so exhausted ( I was also expressing every 2 hours at night- although I over produced so eventually reduced it to every 4 hours to get some rest!) I think the things that helped us get through were having people make or buy us meals to have in the evenings and helping us keep on top of the washing and cleaning as there was just no time. I also read so many books! Books got me through! I forced myself not to sit by my sons side constantly but to have a break and read a book in the communal kitchen. And when I was in transitional care there wasn't much else to do either. It was nice to have that little escape from reality and peace that comes from a book.

[TheDIsiilusionedAnarchist]

My baby wasn’t early but she was small (2.2kg) and very sick and spent six weeks in Teheran neonatal unit. The best things people did

1. Bought ready meals we kept in the unit fridge and microwaved for lunch
   
2. Told us about cheap and free accommodation so we could stay close to her (thanks Ronald McDonald House)
   
3. Gave us a Starbucks card for our daily coffee
   
4. Bought sandwiches and snacks
   
5. Did our laundry
   
6. Bought us small clothes. We’d not expected her to survive so had very few.
   
7. Were responsive to our needs and whims when NICU insisted on organic sunflower oil for dry skin SIL sourced some. MIL sorted a breast pump, my mum turned up with a steriliser.

[KoalaRabbit]

I went into labour at 36 weeks with my first and she was born small for dates and also had jaundice so spent first week in hospital with her. It was really hard as I wasn't allowed to leave her side. Thankfully DH was great. The hospital gave us prem clothes which was a big help. Emotionally it was hard esp being the first and there wasn't any support but there were others so much worse off. I was also only partway through antenatal classes so felt very lost. DH helped me most and the lady in the bed next to me.

[stuckinarut86]

Finding premature clothes was one of the hardest things to find when our twins were born at 24 weeks. In hindsight the need to find such tiny clothes wasn't that important as she wore nothing for some months and soon grew out of the first few items she had. But finding clothes was a focus on a hopefully positive future which it was for her. As for her twin who died within the first 24hours of birth it would have been nice to easily purchase premature outfit to bury her in, though the donated outfits the hospitalised were nice they weren't necessarily what I would have chose. Nicu most definitely wasn't the easiest journey and I feel dads are often left out of the picture as everyone focuses on how mum and baby are doing.

[fishnships]

My children were all full term but, from another perspective, I was a premature baby myself. Then baby clothes were hand knitted so smaller sizes could quickly be made. It is great to have ready made premature baby clothes easily available, thanks to Tu. I know my DM wasn't able to even see me for the first week which must have been hard for both of us! Thanks to tech, even a very ill mother can 'see' her newborn - what an improvement that is!

[sjonlegs]

My daughter had to be delivered just over 5 weeks early, and a hole was detected in her heart. She was small and slender and a slip of a thing ... I'm so incredibly glad that Bliss were on hand for advice and support and Sainsbury's held a lovely range of beautiful smaller baby clothes. It was an incredibly trying time and there's nothing like feeling lost and alone with all that worry. I'm so glad that services and help such as these are available to new mum's with desperate worries. It's such a lifeline! Thank you

[Feargalthecat]

I had my son 13 weeks early very unexpectedly after having a straightforward pregnancy then suddenly going into spontaneous labour at 27 weeks.

I don't think anything could have prepared us for the journey as he spent the next 98 days in hospital. Family and friends rallied round helping with our eldest and support came from people I wouldn't have expected, a school mum who I didn't know we'll offered to do pick ups and I then learned she'd been in the same boat a few years earlier.

I found Boots did a good prem clothing range that was accessible for tubes etc which were useful. At first even the smallest sizes were still much too big.

I did use online support from both Bliss and Mumsnet but I was too scared to go online and google outcomes at first and found I turned to those later on and in his first few years.

He was discharged on oxygen a few days after his due date and is now becoming a strapping 13 year old although his difficult start left him with cerebral palsy and learning difficulties.

[Blueroses99]

My DD was born at 24 weeks but the last month of my pregnancy was on bed rest due to complications which had resulted in losing my DS at 21 weeks the previous year. While in bed rest, I read several books about premature babies. All of them without exception said DON’T read this cover to cover, just dip into it as needed, just read what’s relevant on your preemies journey. However, I like to read and I found that having an understanding of the medical terms, premature babies development and other people’s stories was incredibly useful as a parent in the neonatal unit. Obviously not everyone knows that they are going to have a preemie, but knowing helped me prepare.

DD’s first nappy was a size 0 cut to size. She was 605g, so tiny. My sister bought DD her first dress as her wedding was when DD was 3 weeks. I now don’t remember a thing about that day, it was a blur between NNU visits. Some guests even thought they would be meeting DD that day but obviously she couldn’t leave NNU and they had no understanding as to what we were going through. The dress was from an online preemie clothing site, she couldn’t wear it for several months but it was a lovely thing with cute little bloomers.

DD moved to our local hospital after 6 weeks when she had doubled her weight (to 1.2kg so still tiny!). One morning we came in and she was wearing her first vest. The previous hospital hadn’t allowed her to wear clothes so we hadn’t even tried to hold of any. It’s a special moment buying clothes for your first child and a bit disheartening when there isn’t much choice based on sizing because she’s not a normal term baby, so I’m really pleased to see another range available.

DD finally came home after 91 days in NNU. She was 2.4kg so had quadrupled her birth weight. But still tiny. I expressed day and night for almost a year to help her grow. She is now 3 and now caught up!