I had extremely premature twins - AMA

[Mermaid36]

My twins were born at under 800g each at 26+1 (by emergency c-section)...AMA...

How are they doing now? My friend had a baby boy born at 25+2 weighed 1lb1 sooo tiny. He’s now 5 and a lovely cheeky little boy

Bless you. My smaller twin was 1.6kg and he’s had enough health issues as a result. I hope you’re all doing okay.

They are 27 months old now, and very small for their age - only just in 12-18m clothes and weighing just over 21lb.

One of the girls is still on oxygen 24/7 after a spate of chest infections and a collapsed lung last summer (plus 2 intensive care stays over winter) but other than that they are good.

Congratulations on your babies.

How long were they in hospital for?

What would you advise those who are faced with this kind of situation?

Also what should someone who hasn't been in this position say to someone who is. Has anything been hurtful, or anything particularly kind?

@TheCat They were in NICU for 16 weeks before coming home on oxygen, so it was quite a while!

@Sunshiness I guess it's a bit of a cliche, but take it one day at a time. NICU can be really difficult, because things can change do quickly with very small/pre-term babies. Ask lots of questions, the staff are used to it - I had a notebook so that I could jot things down as I thought of them and ask them at Dr's rounds etc. Also, don't be afraid to cry/get upset etc in front of the nurses - they've seen it all before and can help you get through it.

In terms of what to say/not to say...
DO say "congratulations" when the baby is born, send a card etc
DON'T continually ask when baby is coming home, if the parents knew, they'd tell you.
DO offer practical help (if possible) - can you do any washing? Fill their freezer? Help with school pick ups for other children?
DON'T pester to come and visit - some NICU's are really strict or have particular visiting policies.
TRY NOT to say things like "oh, you'll have more time with them because they are here early", or "goodness, they're small" - 16 weeks sat in hospital is not the kind of time you want to spend with a baby, and yes, we know they're small - that's part of the issue!!

We lived at the hospital for the first 7 weeks - the girls were so poorly that we couldn't risk going home in case we ended up having an emergency and needing to be on the unit.
Best thing that people did was our washing and bring us meals (home cooked and ready meals) - we were spending 15-20hrs a day on the unit, so just taking some of the burden of "household" stuff away was great!

Thank you Mermaid! Wonderful that your girls are doing so well now. I can't imagine how tough those early weeks must have been Xx

Mermaid that's brilliant. Well done you and your DTs.

My DS1 was born at 24 weeks weighing 725g and is now 12, nearly 13....he has various disabilities but is doing astonishingly well, all things considered. It's been a heck of a journey for us and I can't imagine doing it with twins, it was horrendously hard with just one.

Hi Mermaid36, my DS is about a month younger then your twins. He was born at 33 weeks weighing 1.3 kg so tiny for his age and like yours has only just gone into 12-18 months clothes.
I don't have a question but just wanted to say that preemies are amazing aren't they

Wow, 16 weeks is a long time. How did you manage it while you were staying at the hospital? We're they your first babies?

If you went back to work after having your babies, how much maternity leave did you have and did you feel that you needed longer, given that the first few months were used up before your babies came home?

@The cat - yes, the girls are my first and only children. The first 7 weeks we lived in hospital accomodation (similar to Ronald McDonald house) so we were minutes away from the unit. We spent 15-20 hours a day in NICU. After that, we moved back home, and we'd be at the hospital from about 8.30am to 7.30pm (hospital was about 30-40mins from home).
My mum did a lot of our washing and housework in the first few weeks and we lived off ready meals and stuff that people brought us.

I planned to go back to work after having a full year of mat leave, ended up extending it with accrued holiday and then didn't go back because work refused my part time hours request.
TBH, I felt "cheated" out of my maternity leave at the beginning, and even when we got them home, our days were full of oxygen nurse visits and hospital appointments

@Catkin - 24 weeks is amazing - I'm still in awe of what NICUs can do for teeny babies!

@Mammy - yep, preemies are really special and amazing, especially when you think about what they've been through!

Mermaid yes he is pretty amazing. Statistically he shouldn't have survived and I really do thank my lucky stars every day that we were so fortunate. I'm sure you must do the same.

TheCat if you don't mind me answering too, re maternity leave - it's a massive problem for the parents of extremely premature babies. When my boy was born nearly 13 years ago, SMP and official maternity leave only lasted for 6 months - you could then take an additional 6 months but that was completely unpaid. I think SMP is for 9 months now? So it's better than it was, but still a major problem when you've spent a vast chunk of that time in NICU. My little chap was born 109 days ahead of schedule and was in NICU for 120 days (a pretty short stay, all things considered) but by the time he came home I had only two months left of my 6 months' maternity leave. There's no way any nursery could have taken him at six months old because he was the size and had the development of a brand new newborn. So I had no choice but to resign from my job. This was totally what I wanted to do but it took a massive hit on us financially. I went back to work part-time when he was 18 months old, but it wasn't until I had DS2 at 38 weeks and I had a lovely 9 months' maternity leave with DS2 that I realised that was how it was supposed to be. I think inevitably your first experience of being a parent is, by default, your understanding of 'normal' - and extreme prematurity was our normality. I'm sure it must have been similar for you Mermaid, except times two!!