premature baby

[Candycotton]

hi all,

I have held off writing a post on here for a bit but feel ready to now. has anyone got any experience with premature labour? my little boy came into the world 10 days ago at nearly 28 weeks, weighing 2.8 pounds.

brain scans have all come back clear and the hole in his heart has happily now closed. he is currently on CPAP/high flow to help with his breathing. I was feeling really positive and then late last night read a story about a 28 weeker who didnt make it and it's really really hit me and I cant get myself back up.

ridiculous really, but I didnt let the thought he might not come home enter my head as the idea of him being here for my birthday and Christmas was all that was getting me through. I feel totally totally crushed now. A consultant told me to look at it as his risk is not necessarily high, just higher than a baby born nearer or at full term. I took comfort from this at the time but I'm feeling very low again now after reading that story.

does anyone have any experience? and any tips on how to cope?

thank you

My preemie is about to turn 21 ☺️

My advice would be to just take each day as it comes, listen to the nurses and doctors, be positive and upbeat. Keep pumping the milk, do the washing/nappy changes as much as you can and talk to your baby.
Your “crash” is probably partly hormonal. Make sure you eat properly and look after yourself. Getting dressed, hair brushed etc does make a difference.

Luckily google didn’t exist then. Don’t google!!

And accept help wherever it is offered.

aw I'm glad to hear! that's great.

yes, I think google is both a blessing and a curse atm. I have seen a lot of happy stories and outcomes but yes that one I read yesterday just knocked me so low.

I find myself feeling very panicky as i approach the hospital still. i was hoping it would get easier as the days went on but sadly not :(

thanks for your response, I will try and look after myself as much I can.

My 29 weeker is also 21, at a Russell Group uni, 6ft tall with size 11 shoes! He was 2lb 11oz but has never had a single medical or developmental issue, apart from some back teeth being taken out.

He was born mid October, and I do also remember having a big emotional crash at New Year, about the time he would have been born. I think a lot of it is hormonal. You are at the very early stages and you have had a huge emotional and physical trauma and will also be grieving for a normal pregnancy. Be kind to yourself, you are doing brilliantly.

I agree, take it one day at a time and get all the support you can. Get as much skin to skin time with your baby, really helps to bond and they adore it. I found it tough to see other mums doing all the normal milestones but you have to be patient, it's a long haul. He was on CPAP for quite a long time but suddenly just stopped needing it. Sad things do happen but care of pre termers is improving all the time and the vast majority of outcomes are very positive.

You and your baby will get there and this will all be a very distant memory. BLISS are a great charity with loads of info and support. Best wishes to you.

thank you.

it's amazing what they can do to help them now. I think that is also what I'm struggling with. I went into the hospital the day before with bleeding and they said everything looked normal, that they couldn't see where the bleeding was coming from. I now know it was my mucus plug coming away. the test they did for pre term labour also came back negative. my son was here 24 hours later, I guess I'm confused how nothing was picked up as this meant I only got one dose of steroid injections about 2 and a half hours before he was born.

I go between being angry, lower than I've ever been and then I can do this, hes going to get home. then sheer panic if he doesnt. it's an awful merry go round of emotions.

I guess I just need to keep what the consultant said in mind too - anything can happen at any gestation and hes in the best place right now.

I'm glad to hear your son did well too :)

it's a tough and stressful time.

A 23 weeker I know who weighed less than 1lb has just started secondary school!

At the hospital where I gave birth there was a wall of pictures of babies and children (former patients) just as you went into ScBU. I found it very uplifting every time we went in. I’m guessing this is your first baby? You never stop worrying about what might happen to them, it’s what being a mother is about - will they pull a plug out of its socket, will they fall off a swing, will they break their neck playing rugby, will they crash their first car, will they get home after a night Clubbing etc etc etc. It shows you care!

I’d ask if there’s any specialist counselling available to help you come to terms with the way your baby entered the world especially as it came as a surprise. I was lucky in the sense that I knew that I wouldn’t go to full term and was in hospital for some time before my baby was born and had a chance to visit SCBU etc to come to terms with it.

he is my second, I also have a one year old little girl that went full term which I guess is also why this has come as such a shock. I'm not sure I'll ever know why he came early.

I'm trying to take every day at a time, it's just so worrying. I definitley think speaking to someone would do me good. I'm going to look at that bliss charity that was mentioned. feel like I have the weight of the world on my shoulders atm.

There’s really no point in spending energy wondering why. It’s happened. Focus on the present and future.

Both of my daughters were prem, first @ 33 weeks, but she had IUGR and weighed only 2lb 13oz, no health problems, just very small for gestation.

My second daughter was born at 27 weeks, weighing 1lb 6oz and was quite poorly.

My advice would be to steer clear of Google, I know it’s difficult, but do try.

33 weeker came home at 17 days old, weighing
3lb 8oz. 27 weeker came home at 66 days old weighing 3lb 5oz.

My girls are now 17 & 14 with no health issues whatsoever.

Take each day as it comes, and take any help offered. Wishing you all the best

I had a 32 weeker who is now and adult ,well over 6ft with size 11 shoes and no medical issues.

Don't Google anything.

If you are in the uk and on face book there is a wonderful group called parents of preemies uk. There's about 10000 of us with babies of all different gestations and there is pretty much nothing we haven't seen before.
There are parents with children at all different ages from yet to be born to adults.
They are wonderfully supportive, they helped me massively when my 36 weeker need emergency surgery at 3 weeks old and I wish I'd know about them when 1330g 33 weeker was born.
But I'd also take what the drs are saying to heart. If they aren't worried about your baby then all is well and he is doing fine which is amazing.

I was quite premature and never had any problems! I now have a little girl of my own. It sounds like his outlook is really good, I'm sure everything will be ok. I am rooting for you!!

Preemie mama twice. My 29 weeker who weighed the same as your little one, is soon to turn 18 and is taller than me. Came home on oxygen but other than that, no other issues.
Also my 30 weeker is soon turning 8 and is doing great.
Yes, sometimes there isn’t a happy outcome, but I can’t stress that your baby is in THE best place and the neonatal nurses and doctors are some of the most incredible people I’ve ever had the pleasure to meet. Some of whom have become lifelong friends. Don’t be afraid to ask questions, no matter how silly you think it may sound. They’re there to look after you aswell as your baby.
Take comfort in that there’s no ventilator and it’s just CPAP. There may be bumps in the road, but you’ve got this mama!!
I’m happy to chat any time xx

My ds was born just before 32 weeks weighing 3lb.
We've stayed in touch with his little room mates from the hospital.
Earliest baby was 26 weeks. Smallest was 1lb 12oz. Ds was the biggest of the group.
This summer we celebrated their tenth birthdays with a weekend away. They all get on brilliantly, are all doing well in mainstream school and are all lovely healthy kids. They have a few issues between them but on the whole they've all done amazingly well.

thank you for your hopeful stories.

sometimes you just need a reminder that others have gotten through it. I feel emotionally exhausted now, I think the first week I got through on pure adrenaline, now halfway through the second week and I just feel so tired. feel like I am avoiding people too which is not making it any easier but I just dont feel ready to discuss it with people in real life.

I find I can only spend a few hours in the hospital with all the alarms and beeping before it starts becoming overwhelming and then I feel guilty because I think I should be there all the time. the doctors all speak in the future tense "it should get easier as he moves down the rooms" "the apnea should improve as he gets bigger and stronger" which I am trying to cling to.

Hi @Candycotton congratulations on your new little boy.
I am a neonatal nurse and I've known hundreds of 28 weekers go home perfectly healthy!
Of course there can be hiccups along the way and of course it it such a stressful worrying time for you, the parent.
Please don't feel guilty about anything. You must do what is best for you!
We have some parents who sit by the cot all day, and others that visit an hour a day, or every other day.
It is especially hard if you have another child, and in my hospital, because of covid19 it's parent only visiting, no siblings,so things are doubly hard.
I also recommend the bliss website, and my hospital has a family support nurse who is amazing, she is there for all the parents should they require support. Might be worth asking if your hospital has similar.
Please feel free to message me if you have any questions

Don’t feel guilty - honestly the baby will know nothing and you do need to keep your other child in focus too. I had a nearly 3 year old who I could take in with me to play which helped of course but certainly couldn’t stay for more than a couple of hours at a time - I popped in twice a day with a cool bag of bottles of expressed milk (!) which were frozen at the hospital. There was a young couple who could only visit their baby every few days because they didn’t have a car and no affordable public transport available to them. It was very sad.

I had a 24 week, 1lb 6oz super-preemie - he’s now 6 years old, tall, no health problems and just a bundle of energy and love.

You will gradually get used to the beeps and alarms and everything. I remember feeling so helpless, like I was a pretty poor part-time parent. I used to read to my son - from when he was super-tiny and I couldn’t hold him. I went through so many books - lots of Winnie-the-Pooh, Magic Faraway Tree, Roald Dahl etc - it gave me something to do. Distracted from the noises, - and I figured he’d get used to the sound of my voice.

I remember not wanting to see anyone either - just my husband. I couldn’t cope with anyone else’s emotions or questions. Do what you need to do for you.

You’ll get there - trust in the doctors and the nurses - they can do amazing things. There will probably be bumps in the road, but that’s normal, it’s not a quick journey. Take all the offers of help and support that you can. Xx

OP I think you're doing great but if you want to stay at the hospital longer maybe you could try noise canceling headphones? Also I found herbal/minty essential oils nice when I was in the hospital, I don't think they have any special properties but they smell nice which can be soothing.

34 week twins here. They're now 20. Both at uni one studying languages the other nursing.

My brother (who is now 33) was born at 27 weeks.. and I was born at 29 weeks.
We spent a long time in the hospital but have both been ok with no ongoing problems. And to think that was over 30 years ago when the equipment etc wasn't as specialised as it is today.

Thinking of you 💐

My premature twins are now 1yr 9 months, healthy, happy, and hitting all their milestones.

They were born at 30+1 and 3.1 and 3.6. We spent 8.5 weeks in NICU and special care, and they caught colds, infections, so kept going 'back' in their recovery. Same as you with CPAP/BiPAP/high flow/low flow for WEEKS. One of them couldn't keep 2mls of milk down and was sent to a different NICU for a week discussing bowel surgery, then before we knew it, he was chugging more milk than I could express.

This is going to be a long road, and I feel for you, but your baby will be home in a few weeks I'm sure.

At the time, the nurses kept telling me to keep a diary but I didn't want to. I wished now I had, just so I can show the boys when they are older as to their progress and set backs

I've had two premmies and I know how tough you are finding it right now. One of the most important things is for you to try and look after yourself too. (Easy to say I know) I know you won't feel like it but try and get something to eat, it'll help with milk production. Try and catch some sleep when you can too. I used to hold my babies as much as I could, talking and singing to them so they were used to my voice. Take each day as it comes, that's all you can do. Do things with your one year old too that'll help you through the day. When mine were in hospital their siblings came to visit. I know this isn't possible now but could you facetime in the room or they visit in the hospital cafe or something so you're not feeling like you're facing this alone and it gives you something to look forward to. I agree that this can be a very lonely time and I used to dread going to hospital. I wanted to see my babies but hated that I couldn't leave with them so therefore started to detest going in. (If that makes sense)
I found that if I went in first then had their siblings come a couple of hours later and meet me in the cafe or visit then it took some of the horribleness away for a while. It gave me something to look forward to and a break in sitting next to the cot and feeling like I was just existing. It helped to feel like we were all in it together and we would get through it together.
Everyone will mean well and want to chat to you but it's ok if you don't and they will be ready for when you do. Don't be so hard on yourself, I know you will analyse everything, I did. But, please just focus on now, get into a routine that works for you, baby and family and take each day as it comes.

Sending you lots of love x

I just feel like I've hit a bit of a wall. like I said last week I think I got through on adrenaline and I think was still in shock so it hadnt really hit me.

now i feel really low and like i cant be bothered to get up every day. I feel like I will never get him home and am struggling to find the point right now in getting up. its torturous going to the hospital and I have a panic attack every time I get near, dreading the update.

I'm not sure what the do to pick myself up and fight. in the last couple of days I just have convinced myself of the worst and I am really struggling.

I've reached out to Bliss but I am not sure where to go for help.

I have a 24 weeker, now 4 and started reception. She was in NICU for 91 days and I kept a daily blog. DM me if you would like to read it. I remember hitting a wall and crashing. It takes its toll on you, not straight away because you are staying strong for your baby but after a while the adrenaline isn’t sustainable and all the emotions come flooding in. Hand hold here xx