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

I had 2 premature babies
My first DC I was only a young mum and developed severe preeclampsia. I was in hospital a week prior to having DC and then had her premature. We were in a hospital another 2 weeks after that and finally sent home together. However she has gone on to have disabilities relating to her birth and it's something I have struggled with a long time.

Second DC was also premature. I was consultant led this time but didn't develop preeclampsia again. DC stopped growing at 28 weeks and developed IUGR. Had an emergency c section and spent another couple of weeks in hospital too. This time it was really difficult as I already had a DC with complex needs who didn't understand why I wasn't at home.

When I had DC the only place to do premature baby clothes that fitted (2-5lb) was mothercare and boots and they were really expensive. Also, it was difficult to actually get them in the first place as I was still in hospital and DH couldn't go to the shops easily because of my other DC. Perhaps some sort of service where you can order baby essentials to the hospital? I needed teeny tiny baby bottles and other things for premature babies which I hadn't anticipated. Something like this would be so useful

Complications began early in my pregnancy with DS1. I had a Subchorionic Hematoma that hemorrhaged three different times along with two different slow bleeds. Then at 24 weeks 4 days my waters broke. DS and I were the lucky ones and made it 6 weeks more on hospital bed rest. He worn at exactly 31 weeks gestation weighing 3lbs 6oz, he was quickly taken to the SCBU. He received one round of surfactant to help his lungs. He spent a short amount of time on si pap machine then went to a cpap and quickly graduated to breathing on his own. Owen was in the SCBU for one month undergoing multiple rounds of treatment under the bili lights, gaining weight, and learning to eat on his own. During his time in the SCBU I stayed at the discounted hotel. We lived over an hour away. I can’t describe how thankful we are for the Hotel for the comfort and support they provided during this trying time. There were set backs and triumphs for DS. I was able to be by his side for them all holding his small fingers, sharing this journey with him. I was pumping around the clock to provide breast milk for my son. Having aa breast available at hospital and the SCBU was crucial in establishing my supply to feed my son. DS was released and sent home on an APNEA monitor. How thankful am I. Can I finish by saying the staff were both caring, honest- which we needed, and supportive, and always put baby first.

From the moment my husband and I found out that we were pregnant it was an amazing roller coaster of feelings and emotions. We had been told very early on in the pregnancy that my medical history meant that often come with complications, one being premature birth. At 33 weeks I was admitted to the hospital with severe preeclampsia. Two days later, my beautiful DD were born via emergency c-section, 7 weeks early. They were in the NICU for 15 days, learning to eat and gaining weight. To say that we were overwhelmed was an understatement. Had it not been for the supportive and super caring NICU nurses and support staff I’m not sure my husband and I would have been able to make it. The NICU nurses supported every choice we made and cheered me on as I learned to nurse and pump for DD I only saw and could hold for a few hours a day. Those 15 days were the some of the best and toughest days I’ve ever had. Leaving your small newborn children in the care of someone else is truly a humbling experience. However, we made it through with the help of some truly caring and compassionate people. Today, you would not know that our DD were born so small, they toddled around like any normal baby and met milestones bringing joy and love to our lives..

It was the day after just having our maternity pictures taken a few short hours before. I also had my regular Obs/Gynochologist appointment that same day and everything was looking normal. Up till this point I was having a normal first pregnancy with zero complications. The last thing I expected was for my water to break unexpectedly and be rushed by ambulance from our local hospital for the fast delivery of our DS. Our little prem arrived at 32 weeks, 5 days gestation. Nearly two months early, he surprisingly weighed in at 4 lbs 10 oz and was 18 inches long. We were over the moon to be first time parents but little did we know what a long and emotional road we had ahead and what our precious little guy would have to endure. It was an extremely long journey with a five week NICU stay, with so many ups and downs, listening to machines and alarms, other babies came and went, 2 did not survive even the fantastic care they were given.such a scary roller coaster ride!

I had made the decision to try breast feeding while pregnant. However, since my son was NPO and then eventually on a feeding tube, the only way this was possible was through pumping. I pumped directly after delivery using the hospital’s pump. Once I was discharged I LIVED with my Pump In Style, religiously pumping every couple hours and even setting an alarm at night to pump. I had so much milk to give to the NICU they told me that I could start freezing it at home because they were running out of room! Words can’t even describe the feeling I had when they allowed me to push his first 30 cc of MY breast milk through his NG tube feeding.

After many setbacks we brought our son home after five weeks, but not before clearing freezer space first for all of my liquid gold. We brought him home on O2 and an apnea monitor for the first month home. Once home I eventually switched to exclusively pumping his milk for him without nursing and used bottles instead for feedings.

We are so blessed to have had the care our son received while at the NICU and for all of our family and friends’ prayers and support. And cannot thank staff enough for making it possible to give my baby the best stuff for him and allowing me to connect with him in a way that would have previously been impossible. It allowed me to provide for him and give him something that the NICU could not, which was empowering. Today, he is a happy, perfectly healthy.

DS was born at 33 and a half weeks. All very unexpected, went from being at home and realising something was wrong to DS being born via emergency c section 2 hours later.
The hardest thing was dealing with the various emotions. I went from being at work not having started maternity leave to being in hospital for 2 weeks with DS. Luckily he was born a good weight and with no major complications. The NICU staff were great and we were able to take DS home with his feeding tube still in with the support of the community neonatal team. Knowing they were contactable 24/7 when we first got home was very reassuring.

Very pleased to hear TU are doing a premature baby range. It would be great if some were stocked in store for unexpected arrivals. We bought a few prem baby grows from Mothercare at the time.

I experienced a few scares throughout the first 4 months of my first pregnancy and after bleeds, and two ultrasounds, I was diagnosed with a uterine abnormality called “bicornuate uterus” (a heart shaped uterus). My obstetrician assured us that it was simply caused by the point down the middle, which was bleeding as the baby grew. He told us that by 18 to 20 weeks it should stop and things would progress 'normally'

I had my 20 week scan. and all was well. At 23 weeks and 5 days old I woke up in pain, I thought I was having my first “Braxton Hick experience” I took a bath, but after an hour the pain became really intense, I rang the hospital and they told me to come in, just to be on the safe side. I was sure that I would be told it was Braxton Hicks and would be sent home, to my shock, the doctor told me I was 3.5 cm dilated and she could see my waters.
They tried to stop my labour (or stop the inevitable for the steroids to help the lungs) my labour was progressing faster. We were told that our baby would be very small and under-developed, and her odds of surviving were 50% at best. If he did survive, there was a very real chance that she could be disabled for life.
The doctor asked us to decide whether or not we wanted to revive him once he was born. It was the hardest decisions we have ever had to make - for him. and us but we decided to give our little one a chance at life. I was inconsolable.

11 hours later DD arrived weighing 650grams the APGAR score was 4. A few hours later. I was wheeled to Intensive Care for the first time. DS was very poorly, hidden amongst tubes, wires and machines. It was so overwhelming, I couldn’t believe what had just happened.

The lungs were so underdeveloped they could not breathe on their own, and was on life support. his tiny body was not ready, her eyes were still fused shut and he had suffered a brain haemorrhage during delivery.

We spend every moment next to the incubator, forgetting to eat or sleep. We knew we may not have long to be with him, every breath he took, every wriggle, every time we put our hand into the incubator to touch the foot or hand.

At 21 days old and weighing a 518grams, he had to have heart surgery Being born at 24 weeks meant that there was underdeveloped lungs. and required life support since birth, to keep breathing, the surgery was the longest most terrifying hour in my life, but the surgeon told us that he had survived the procedure - just one of many hurdles.
When she was 60 days old, I was able to hold him for the first time, and I cried with happiness when the nurses handed him to me for the very first time. I couldn’t believe I was holding my baby.
The only way she could have a chance to come off life support, was if we agreed to try a. new drug, which can cause bleeding on the brain, disability and death. Without it we were told she had little to no chance of surviving. he was to be given two courses of steroids to reduce the inflammation in the lungs and hopefully would be able to breathe. If they did not work, it would be time for us to let him go.

At the end of the two week course, DS had improved just enough to try taking him off life support. , we were moved out of Intensive Care and into the special care nursery. From here we could get ready to go home. We were told that she would need to come home on oxygen equipment, so we ordered some ready for her discharge. DS is in perfect health. he needed. psychology, physio, speech and occupational therapy assessments, he still has a stammer which needs ongoing speech therapy - but we can manage that.

we feel so lucky to have him in our life.

I had prem twins born at 26 weeks who stayed in SCBU for 8 weeks.

I was stunned by the total lack of support on the whole, particularly horrific was a breezy rep who came into the ward regularly to chat to mums and would chatter about play activities etc which were a million miles from what I needed to hear.

We couldn’t get any perm nappies most of the time so made do with newborn ones and tape!

I used to just sit by their incubators from 8am to 10pm every day and occasionally the hospital chaplain would sit with me for a bit. I’m not at all religious and made that clear early on! But it gave me a little bit of calm and I found it very touching that he kept me company.

Our son was 4 weeks early so not that long but he was quite small and very jaundiced. He also had a lot of feeding issues and the first week was a truly awful time - so much conflicting information from the staff in the hospital being given to me, severe tiredness from never being able to sleep on the ward because of babies crying, alarms going off or people coming to service the bed or TV (yes really)

My biggest support was my husband he was an absolute trooper, especially as they didn't really allow any other visitors. He had to go out and buy tiny baby clothes as everything we had bought was far too big, he helped keep me sane and kept an eye on our little one during the day so I could try and sleep. I think it is so important to receive the good support during this time, especially if you are a first time parent as we were. It's a worrying time when your little one is premature and I think it would be good for staff in hospitals to remember that things need to be explained clearly in a way that is easy to understand and given all the options available to them throughout all stages of their stay in hospital.

My niece was born premature 3 years ago. She was so tiny and she was her mother's first baby. So understandably my sister in law was very upset and worried. She wasn't producing enough milk. And she worried that her daughter wouldn't grow properly. But thankfully she stuck to it, fed her bottled milk and 3 years later she's an absolute gem.

Premature and born in the first wave of lockdown. Double whammy. Size 0 nappies and premature baby clothes were extremely useful.

DS1 was born at 36 weeks, so not overly premature but I was only 19 and didn’t even know things like size 0 nappies for prems, or tiny baby clothing. I had already bought everything newborn + so it was hard to have to run out and find smaller clothes for him.

Thankfully he was born happy and healthy and he didn’t need a stay in NICU, which I will always be grateful for 💕
He’s now a massively cheeky 5 year old, enjoying his new journey in school, and you would never know he was a premature baby at all!

Adding to my above comment - my biggest support was my Family Nurse. Being only 19 years old I was entered into the FNP which gave so much more support than a health visitor. She helped me over come so much, got me in touch with breastfeeding support groups, helped source clothing and smaller nappies, etc. She even supported me through severe post natal depression. She was my only life line at the time and I am so thankful for her and the whole Family Nurse Partnership and I hope all young, expectant mothers who use the partnership feel the same way too ❤️

My second DC was induced 5 weeks prematurely due to ICP. He was in HDU and SCBU for a week.

I had v little support from the hospital, was put on the postnatal ward without my baby who was 2 floors up on HDU, I had to traipse up there several times a day - in my post birth state- to take expressed milk (having had to fight for them to give me something to express into) and to see his Drs. It was utterly shit but at least he was ok in the end.

My advice would be to take up every offer of help - childcare for other DC, food, cleaning etc. And keep badgering the hospital staff if they are not letting you know what's going on or being supportive. And don't worry that your baby isn't always sitting up/ crawling/ walking at the same time as all the others, it might just take them a bit longer.

My first was 6 weeks early weighing 4lb 7oz, I was a young mum and had no support from the hospital/health visitors and felt completely overwhelmed, he used to take an hour to feed and took forever to put on weight (he is now a healthy 14 year old), my daughter was born 3 weeks ago and was 4 weeks early (was
Induced due to placenta failing), still no support but I knew what to expect this time around and could cope on my own, luckily she feeds brilliantly and has surpassed her birth weight after a few weeks.

My child was 7 weeks premature. I'll never forget the kindness of the midwife who early next morning bundled me into a wheelchair, roped in a nursing assistant to carry my drips and took me to see him for the first time in NICU. During his time there thoughtful texts from friends and the patience & kindness of the NICU nurses meant a huge amount.

My twin nieces were premature, I bought loads of prem/tube friendly vest and suits for them. My brother and his wife said they really liked that gift as they could dress them in their own clothes and felt it brought a bit of normality to a scary part of their life. Years later they still bring it up as the most useful present they were given initially

My son was born at 28+1 weeks in Italy on what was ment to be a Babymoon in 2018,
The nicu is a long and hard journey and we spent 108days in three different Nicu's in two different county's which involved one air ambulance and far to many land ambulances. Our journey is far from over but we will get their just on ur own path. At the start of our journey we used bliss to try and answer sooo many questions that we had about what was going on and why premature labour had happen.

I've had two babies born prematurely, both 28 weekers. One survived for only 5 days but his little brother was born this year and is now home although still requiring oxygen support.

Nothing can prepare you for premature birth and nothing can prepare you for a death of a child or the stresses of life with a NICU graduate.

It is completely life changing and support is so very much needed to help a family through.

I'll always be grateful to the hospice that helped give us support in our son's short life, they helped us create memories and keepsakes and they continue to help us now with our grief.

Our family and friends have been amazing, they'd ensure our firstborn was totally cared for, we were all eating well and give us words of comfort. They have done so much for us as a family.

During lockdown, I spent 3 weeks alone unable to leave NICU due to us all having to isolate on the unit and I'll forever be grateful to my friend's mum who had an inside contact that managed to sneak me in a lovely parcel of treats and magazine. They were very much appreciated by us NICU Mums. It was a very lonely and scary time but us NICU Mums helped support each other through, with a 2 meter distance of course.

My girls were 6 weeks early. It was a planned c section as we'd had complications with the placenta. They were tiny at 3lb5 and 3lb9 and hadn't yet developed a sucking reflex to feed.

We were extremely lucky with very little intervention needed, but NICU is hard and I am ever thankful to the wonderful staff who supported us and took care of my babies.

My first was 7 weeks early. I was overwhelmed with the kindness of friends and family. One person at work sent me all their preemie clothes from their own little boy who had been born premature a few months earlier, people rallied to make sure we had everything we needed for taking DS home. It really took a lot off my stressed put and anxious mind.

Being in neonatal is a terrifying time, it’s such a rollercoaster but the nurses who work there are truly guardian angels and the support from other mums on the unit has been amazing both during our time there and in the 18 months since we’ve all been home.

I’m now 37 weeks with my second and hoping for a smooth and straightforward delivery.

I've never had any experience with premature birth but have heard so many stories and seen so many news articles about it. I love the fact that there's more clothes for premature babies in stores!

My sister in law was inconsolable after she gave birth to her DD prematurely, and I remember being there for her and just encouraging her to stay positive and giving words of encouragement. I just tried being there for her and being positive.

I think the main thing is to realise that other people have been in the same position as you, and so you know there will be help and support available and there's a light at the end of the tunnel. As long as everyone around you is staying positive and you're not overthinking or stressing about it all, your kids will be fine.

Our first born arrived at 34 weeks. She was a good weight but needed some help with maintaining body temperature, feeding and with jaundice. Mixed experiences. I wasn’t allowed to stay at the hospital which was incredibly hard. I pumped at home every 2 hours and stayed at the hospital from 9am-9pm. One night they gave her someone else’s milk by mistake. Another night she had a dummy in her incubator even though we’d never agreed to her having one (& were heartbroken think she’d been crying all night). One staff member in particular was very ‘matronly’ and told me off for wanting to cuddle her too much 😔 We were so glad to have her home after 2 weeks.

I've been lucky in that I haven't had any premature babies. However, that does not mean that I don't know the fear of them or of having tiny grandbabies. I think the main thing is to be positive. Negativity ruins everything.