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

[sharond101]

We were only a few weeks early but I was small and baby was therefore small with a few complications. The medical team put the fear in me. Every day a new syndrome was suggested, small issues bundled together to hypothesise what cold be wrong. Blood tests or this and that, genome testing and worry after worry. My Husband was and is a realist. He grounded me and could see from the outside nothing was wrong. My Son was perfect in every way and no syndrome was indentified. So much worry and Husband was right all along.

[lillypopdaisyduke]

DS1 was 8 weeks early, and weighed just 3 pounds, SCBU was my second home for weeks. There were a several heart stopping moments, but we got used to all of the noises and alarms in the unit. The staff were amazing. He is 8 now and above average in weight and height. I have done several raffles and fundraisers for the unit, as I was one of the lucky ones.

[BristolMum96]

I was young having my first and she arrived much smaller than expected. I didn't even know they did size 0/premature nappies so the poor baby wore size 1 for a few days (went up to her chin!) until a midwife kindly let me know about other options.

[voyager50]

I haven't had a premature baby myself but a close friend did.

The thing she was most grateful for was the kind and generous donation of breastmilk from other mothers via the milkbank - it meant such a lot to her to be able to give her baby natural, healthy nutrition when she wasn't able to herself.

If any of you are able to donate any, it really does make a difference - thank you.

[FraterculaArctica]

I've had 2 premature babies born at 35 and 33 weeks respectively. The 33 weeker spent 16 days in hospital in total (8 days in each of 2 different hospitals). The thing that supported us the most was the generosity of various amazing friends, who stepped in when my waters broke at 31 weeks and took me to hospital at 6 am, looked after our older 2 children all day and overnight on more than one occasion, and did shuttle runs with me and DH to and from the hospital to help us get to baby DS when he was in NICU.

[bob1985]

My DD was born nearly 7 weeks early. Practical things that helped, our NiCU had a clothing bank. We found it so hard to find things in stock , it was great to be able to pick up a few donated bits. We handed in a pack of premature baby grows when we were discharged.

For emotional supper the Bliss volunteers were amazing! Always had time for a chat

[NoHunGosh]

I don't think anything can prepare you for the harrowing rollercoaster that having a preemie entails. There are so many contrary emotions: the amazement and incredibile joy of having brought a new life into the world is interspersed with nausea-inducing terror that they may not make it and guilt that you have somehow already failed as a mother by being unable to keep them safe inside you. Nothing prepares you for the fact that you will not get to hold your baby for days or weeks, though you can snake your hand into their incubator and place your hand on their feet, or let a tiny hand curl around your finger.
Nothing prepares you for trying to sleep in a ward surrounded by other mums and the cries of their newborn infants while your baby is alone in their incubator, covered in wires and tubes, catheters, IV lines, hooked up to oxygen. The pain of being sent home battered, bruised and stitched without your baby. I thought I'd be able to stay with my boy. 'Go home and rest' the doctors and nurses say. 'There is no room and no point in being here over night until he is big enough and strong enough to start feeding by mouth. That's weeks away'. Weeks.
Weeks spent sitting by the incubator all day, every day. Breaking off to go and express milk every three hours. Then getting up through the night to pump more milk to take to the hospital in the morning. Expressing milk was the only thing that I felt I could do for my child and it gave a rhythm and focus to those long days and anxiety-ridden nights. I was lucky. I had milk and an incredibly scary Sebian NICU nurse who seemed to relish sorting out blocked ducts.
The dedication of all the medics and nurses in the NICU is just amazing and I will never stop being grateful for what they did for us. Fast friendships are made with other mums living in this unimagined world of new motherhood. You share the tiniest triumphs and the crushing sorrows. The outside world ceases to exist, though if you are lucky friends and family will be discreetly cheering you on in the background - leaving you easy to prepare food shopping on the doorstep, bringing you handcream for hands cracked and sore from constantly having to use sanitizer gel, sourcing teeny tiny babygros for when your baby is strong enough to move out of the incubator and into a cot. Having a premature baby was the very worst and yet the very best experience of my life.

[loubieloo4]

All 3 of my children were born premature. Dd 6 weeks, spent 10 days in scbu. Ds 11 weeks, spent 2 months in the nicu, dd 5 weeks, stayed with me on the ward for a week until discharged.

When dd1 (1999) was born she was a good weight and thankfully only needed a little help to feed. We really struggled to get small baby clothes and had to order them in from boots, Adams and mothercare or go and pick them up from the larger city stores.

Ds (2001) was a tiny 2lbs and the only clothes that fit him were dolls clothes or some of the used stuff from nicu. I was made to leave the hospital 3 days after he was born (emcs), the physical and emotional pain were heartbreaking. We did have family that could watch dd for a couple of hours each week, most of the time I had to take her with me to visit him. It took an hour each way on the bus, thankfully the nicu team were amazing and tried to help as much as they could. Unfortunately I do think I had pnd that was missed, even after I told the Heath visitor I wasn't going to visit him again until he was ready to pick up.... like a bloody takeaway.

Eventually he came home (I did see him every day for hours) weighing 3lb 11oz so we had to order specialist clothes and nappies from boots, they were the only place that did clothes etc that small. They cost a fortune.

It would have been so great to have the support that's available now, especially online. I don't know anyone who had babies as small as mine and the loneliness of trying to be everything I could for dd and pump and feed ds every 2hrs was exhausting. He never managed to latch on so I pumped and bottle fed for the first 3 months. He could only take 1/2 oz every two hours when he first came home and it took him 40mins to do that! Dh was amazing but worked a long commute and long hours.

I hope that TU and Sainsbury's have included tiny 2lb clothes in their collection. I would have felt so much better if I could've dressed ds in his own clothes sooner.

[loubieloo4]

Wish I could edit! I have just looked through the range and see you have a very tiny range. TU thank you 🙏

[Saucery]

I won’t share my whole story because of anonymity, but Bliss and Sainsbury’s played a huge part in helping me adjust to the premature birth of my DS. The former because of the wealth of information and support they provide and the latter because it was a ‘safe’ little trip out when we eventually came home from hospital. The staff at my nearest Sainsbury’s still ask after DS and he’s 17!
Agree that a wider range of smaller baby clothes would be useful, if they don’t provide them. DS wore a LOT of TU clothing as he grew bigger, but the early days were difficult when looking for tiny clothes.

[EggysMom]

I'd agree that it's lovely to see Tu are including 2lb clothing in the range - our son was 11 weeks early, had IUGR, and wasn't even 2lb in weight when he was born! He didn't wear clothes when on the ventilator but the nurses started to dress him once he moved onto cpap, so he was almost 2lb at that point; even the smallest clothes they had on NICU were too big. We didn't have much money so I bought bundles of second-hand preemie clothes from eBay. He wore "our" clothing once he moved out of the incubator into a cot on oxygen.

I think I was lucky with the support that I received: I got to stay in a private room on the post-natal ward for two weeks (basically until our son was stable), and DH had lost his job during the pregnancy and so was able to spend as much time as me on NICU with our son. Once we came home, he would bottle feed our son at the same time I was pumping, so it really helped the two of them to bond.

One of the most important things to me was that the birth of our son was celebrated by family and friends - congratulations cards, balloons etc. Every child only has the one birth, there's no 'second chance' to celebrate.

And when he or she is being a stroppy toddler ....tweenager ... teenager .... just remember what you and they went through to get to that point, and give them a hug regardless.

[EggysMom]

By the way, Sainsbury/Tu, why are the bodysuits only available in a pink floral design? Where are the plain white options, where are the non-floral designs? I do hope these are still to come ...

And why not push the boat out with yellow or green clothing rather than the traditional white/pink/blue?

[CMOTDibbler]

My ds was born at 35 weeks, and had a week in SCBU as he was breathing funny, couldn't maintain his body temperature, needed phototherapy, was tube fed etc.
The best support was my colleague who arrived with a baby card and a soft washable toy for him and admired him - even though it was through an incubator. Everyone else talked about the tubes, his size etc, and she just said he was lovely, and I was stuck on a ward without my baby and no cards/balloons like everyone else.
Also dh really appreciated the baby shop that he staggered into and said 'my wifes had the baby early, I need vests/babygros/ nursing bras and everything' and they sat him down and sorted it all out (multiple miscarriages had meant we'd left buying more than the big things as late as possible)

[WellLetsSayHesSquare]

The biggest support for us when we had our earliest prem was family who took our older child and continued to do normal things with him when we couldn't. He was shipped around so many people during our little ones week stay but he had a whale of a time. He still had daddy to put him to bed every night but each day he went with either my mum or other family members who took him to the park, farm etc and every day he was so excited to get home and tell us all about his great day (in tesco?! Really?!) It just meant that if we got a phone call from NICU saying I needed to be there earlier than usual I had many people who i could just drop him off with and know he would have fun. Having that support meant i didn't have to choose between my children as I could just go to my little girl as she needed me the most with (almost) no guilt.

[WellLetsSayHesSquare]

Sorry meant to say 7 week stay.

[Amirite]

I gave birth to my twins 6 weeks early, on Christmas Eve. Their due date was supposed to be the end of Jan so when I woke up at 6AM with serious contractions it was a huge shock.

Once we got to the hospital they did not have 2 beds available in NICU so I was blue lighted to the nearest place that could provide beds for us. That was 2 hours away from our home but I didn’t care, as long as they were going to be looked after! I eventually delivered the twins via c section late in the evening... narrowly avoiding a Christmas Day delivery!

The staff were amazing, from the ladies in the kitchen to the docs and nurses in theatre and NICU. We ended up staying for 10 days before being transferred closer to home, the twins were fine but both were jaundiced on separate occasions and they weren’t gaining a lot of weight initially.

I think it’s good to remind yourself that babies are born when they are and that you cannot control it so to not blame yourself. I also think asking nurses and the doctors what you can do proactively to help is useful. I spent my time in NICU learning how to change nappies and bathe my babies which was so useful, I also received some excellent assistance with breastfeeding and getting my supply going, I ended up breastfeeding them for a year thanks to their help! I also kept a notebook in my room to help me with any questions I had so I could remember to ask them. I remember feeling isolated and lonely so looking back I would have called a few more friends for a chat but I did get quite close to other parents at the hospital which was good for some perspective, one other mum in there had her daughter at 24 weeks which really astounded me. They both did (and are still!) doing really well so it opened my eyes in that we were really lucky. It’s not how you imagine your first few weeks with your baby to go but in a strange way I am thankful for it, they had the best possible care from lovely people. Who could ask for more?

[ErinSophia]

My daughter was born 3 weeks premature in 2012. She was in NICU for 9 days before we were allowed to take her home. Our biggest support was family who took care of the house in our absence. The midwive s were very reassuring, I was scared to pick my daughter up in case I knocked out any of the tubes she was hooked up to but they put me at ease.

[Hellomoonstar]

I loved reading bliss websites when ds2 was born at 33+2 weeks. The have a page of premature babies who are now older, pictures of when they were born and now. It was a page of hope.

Ds3 was slightly premature at 35 weeks and we ordered size 0 nappies from Asda. Will Sainsbury’s stock small nappies too now?

I don’t know what I would have done without my friends and family.

[greyinganddecaying]

I think it's great that Tu are producing a prem baby clothing range.

I would love to see "accessible" vests/baby grows for bigger babies on the neonatal unit - my baby was 6 months old before he left and had loads of tubes and wires - "normal" size baby clothes just don't have the access for these things, often meaning that babies have open clothes/leg or arms hanging out and so get cold!
Also quite a few babies in neonatal care are born at term, they also need accessible baby vests and baby grows.

Tu - if you could do this it would make a huge difference to so many babies and their families!

[greyinganddecaying]

I remember having both Asda and Mothercare prem baby clothes and found that the Asda ones were better for us as the press studs were all down both sides, which meant we could always get them on our baby.
The Mothercare ones bad Velcro that stuck to everything and often only opened one side (usually not the side where he has a cannula so we couldn't get them on properly!)

I think one of the most important things on the neonatal unit is parent peer support - parents being supported by other parents who have also had babies on the unit. It's an experience that so many don't understand as they've never been there.

[Gin4thewin]

Both of mine have been premature at 34 weeks and it was both times, the most mentally and physically exhausted i have ever been, not including the factor of just having given birth.

My daughter was very sick and had to have bowel surgery at a week old, my family completely took over the care of my 6yo son without being asked so that myself and my fiance could be with our daughter. My grandparents sorted all his school letters into a folder for me so i could be organised when things started to level out.

Knowing my son wanted for nothing, was happy and with people he loved was the best help we received because it took a little bit of stress away from a monumentally difficult time for us.

[BellaVida]

My twins were born 5 weeks premature- both struggled and were taken straight to the NICU. It was a real shock only being able to give them a quick kiss before the were whisked off and it seems like hours until I saw them again. I was taken back to my room and had to wait several hours before I was taken to see them. Then of course they were in incubators and I couldn’t even hold them. I wasn’t prepared for that gap, or the sheer panic of not knowing what was happening.

When family visited and looked at them in NICU, I really wasn’t prepared for their reactions either. My twins looked poorly and one had an obvious deformity. I was obviously thrilled with my babies and thought others would react the same way, but there was pity, shock, upset and one person even had to leave the ward as they found it too much! I don’t blame them now, but looking back it was v tough on top of everything else we had been through.

Leaving hospital without them was one of the hardest things I’ve ever had to do. It goes against every instinct and I just got home and sobbed.

After that it was a juggling act with a child at home, back and forth to hospital, expressing breastmilk, then one newborn at home and another still in NICU. On top of that we had to order special tiny nappies (couldn’t buy them anywhere) and track down premature baby clothes. If it hadn’t been for family help we never would have coped.

[Bollockingfuck]

I agree with other posts - there’s very little to prepare you for a premature birth and it’s probably best not to worry about it too much beforehand as the chances are that most people will have a pretty ‘normal’ experience.

The worst experience of premature birth is never being able to take your babies home. Leaving the hospital without my twins was the worst journey I’ve ever made, worse even than walking in to their funeral. I had huge anxiety going back to the hospital for many years.
The best thing other people can do in this circumstance is acknowledge that your babies existed, remember their names and don’t spend any visit or phone call in such an emotional state that the grieving parent has to comfort you.

When my youngest child was born at 32 weeks and transferred to a distant hospital I would have loved to have been told where I could buy food (ie a supermarket) other than at the hospital coffee shop. I was glad to be staying at a Ronald McDonald house near the hospital but it’s just so hard trying to get to a shop when you’re pumping (with additional time cleaning and sterilising, labelling milk, getting it to the fridge), trying to talk to nurses at each shift change, talk to doctors on their rounds, care for the baby (which is terrifying and lengthy as you have to be so careful with ventilator tubes, gastric tube, cannulas, pulse monitors etc) - all whilst recovering from a birth and in a state of terror that your baby might not survive the night.

I had to get the bus from the hospital into nearby town to go to mothercare for small enough nappies and clothes. I remember standing in front of the tiny outfits and feeling so faint and overwhelmed, I burst into tears. I think having a friend offer to help with this kind of shopping or just a short visit would have been lovely. People rightly know that they can’t visit a premature baby but visiting the mum can be a big help!

I hope everyone commenting on this thread is ok after reliving their experiences and that their babies are safe and well or at peace now. ❤️

[yellowgecko]

It's great to have more clothes available for prem babies! There were some but quite limited choice when DS was born at 30 weeks. He didn't start wearing clothes though until he was almost 4 lb from memory.

We spent 10 weeks in NICU and 4 months after on home oxygen. He's now a fantastic thriving 4 year old, who you'd never know was such a tiny, poorly baby.

I was hugely supported in the unit by the amazing nurses, and support staff. I am still in contact with some of them. Other mums there were a huge help too and we still have play dates. They knew exactly what to say, and we lived every shred of good and bad news together. We raised £1500 for the unit through fundraising.

What I found hard was coming home. I had PND for months after and friends I would have gone to for support before didn't understand. I needed 2 rounds of therapy and a lot of time to feel like a 'normal' mum. Hard as it is, talking about it helps so much. The Bliss resources were great.

I'm now 25 weeks pregnant, and while I am scared of the same thing happening again, I know that we got through it once and we will again. We have some life long friends we wouldn't have without that experience. And I have my little boy. For anyone going through it, my heart goes out to you and while it may not feel like it right now, you will get through it too 💕

[BlissPeter]

Thank you to everyone sharing their amazing stories of having a premature baby. At Bliss we know that having a baby needing neonatal care can be challenging. We just wanted to mention that you can find information and support at our website if you need it, at any stage of your neonatal journey: bliss.org.uk/parents