Need some positive outcome stories.

[Kcd1984]

I recently gave birth to 26+6 week twin boys we are currently in the neonatal unit.
one is doing slightly better than the other only needing the hi flo unit to support breathing the other is on the ventilator. Been here 9 days so far.

The labour was an emergency c section so only had time for a single steroid injection and that was it, no magnesium either.

Has anyone else had preemies that have done well without the steroid injections etc.

Both are gaining weight, already eating full feeds.

Im not expecting a miracle I know I’m in for a long bumpy road but could do with some positive outcome stories to give me hope.

Are they taking bottles ? Or through the feeding tube ? Infection and bleeds are your main hurdles. Sounds like they are doing well. Have you got other children? My son was a 33 wheeler nearly 12 weeks ago . Scbu is tough , good luck

Through feeding tube atm.

Yes I thought it was very unusual to have bottles at that age .
They sound like they are well , my son aspirated and wouldn't keep milk down which wasn't great .

What weights are they? A lot seems to depend on how heavy and developed they are.

The biggest was 2lb 3 at birth the other was 2lb.
They lost weight during their first week now going up again. My biggest boy is has his 1kg certificate, my smallest is 920lb at his last weighing.

I just gave birth in December at 27w4. It was an emergency section and the steroid was given minutes before I was rushed to theatre, so basically no steroid. He's now 37 weeks and still in NICU on a tiny amount of low flow (he was ventilated, then on CPAP for a long time, then high flow for a long time). However he turned a corner in the last week when he went on low flow. He's failed one sleep study in only air (how they test oxygen requirements when getting close to going home), but he's having another one next week and him passing is an actual possibility, which would mean he comes home without oxygen. However, I've also read lots about coming home on oxygen as it's certainly a possibility for us, and it doesn't look as terrifying as I initially thought.

That’s wonderful, thank you for that ray of hope.
Hoping your little one passes.

I'm not sure where you're based but in the NW there's a local charity that has active Facebook pages and things and parents that have gone through NICU that visit the ward. You might have something similar where you're able to hear more stories about people in similar positions. I found the NICU counselling staff really helpful too. It's a really, really shit thing to go though, but it's amazing what these utterly tiny humans can do.

Hi OP, no direct experience as my preemie was further along but just to say it sounds like they're doing great - full milk feeds already and gaining weight is great! They are already past the tricky earliest days so I'd say things are looking really positive.

Just to add, one of my best friends was born at 28 weeks and that was nearly 30 years ago - she's now a wonderful, brilliant woman with a little baby of her own. Her only lasting effect was asthma that she had throughout her childhood (didn't help that her parents were both chain smokers so she got a lot of second hand smoke...) otherwise she was and is fine xx

HI OP, I had twins at 27+6, mine did have the steriod injections but I don't recall magnesium - both 2lb 6, Twin 2 went down to 970g. It was a while before they started gaining weight (about 14 days) so the fact your boys are gaining is a good sign.

It will be a rocky road, there's no way of getting around that, but there is lots of support - have a look at BLISS (the charity) and see if the hospital offers any support. There will be good days and bad days but stay positive.

Mine came home at 36+4 so after 61 days, and we had fab support at home for a few months after that. They were signed off just after their 2nd birthday. They hit their milestones a little bit late but had no lasting effects of their prematurity at all (they're 18 now and off to uni in September).

38 years ago our DD was born at 29 weeks.
For the first 6 days we were prepared for her to die.
Consultant was very good and not giving us false hope.
She had tubes in her arms, legs, tummy, head, mouth and nose.
She had other ideas and at 3 weeks we were able to hold her and
give her a bottle.
At 12 weeks her older brother was able to see her on Christmas day morning.
At 22 weeks she came home.
When she went to senior school she still wore clothes for 3/4 year olds.
Now she is a mother of 3. Still only 5ft tall.
But apart from colds she is never ill.

@Kcd1984 congrats on your boys!!! I had preemie twins born at a similar weight 6 years ago now. It was a hell of a rollercoaster and without a doubt the hardest time of my life. HOWEVER they are gorgeous, funny, kind and brave little kids now and I wouldn’t have it any other way.

This board is super quiet (as is the Multiple Births one) but there’s a great Facebook group called Parents of Preemies U.K. which is super busy and full of the most amazing advice and success stories.

There is also an incredible Breastfeeding Twins and Triplets U.K. group - It’s not too late to think about breastfeeding (only if you want to of course).

Sending you lots of good luck and huge congrats on becoming a twin mum - it’s the best thing ever😍

I just wanted to say you and your boys are doing so well. I had twins girls born a little later than your boys (33 weeks). I had 1 steroid injection an hour or so before my emergency section and no magnesium. My girls are now happy, healthy 8 month olds. Just wanted to say wishing your boys well and wishing you strength at this time. I made friends with other parents on the units and this helped me. (we still have occasional meet ups now)