Twins in NICU

[Tonii1985]

My friend has had her twins at 33 weeks and they are in NICU. She is really struggling. They are generally very positive about the outlook but it's going to be a long time and things aren't looking as good for one of the twins.
She doesn't want to see anyone but we are talking over message.
Anyone who has experienced similar - what can I do? I want to help but just don't know how.
Thanks

Not the same but I lost my baby at 20 weeks lat week. The most supportive thing for me is receiving little text messages letting me know that people are thinking of me, even if I can’t reply. It’s been irritating when people say ‘here if you need me’ because I don’t know what I need. My mil has been more specific eg ‘I’ve bought you bread and milk, what time can I drop them round’ which is much more helpful. The other message that has stood out to me is ‘I know you’re not ok, tell me how you’re feeling’ which is such a validation and an invitation to share as I’m not always sure people want to listen to an answer that isn’t ‘I’m doing ok’.

Just keep in touch- keep texting to let her know you are thinking of her and there for her whenever she needs you- doesn’t need to be a text that requires an answer- just a text to let her know you are thinking. I really appreciated any contact I had when my baby was in NICU. I didn’t always reply, but appreciated people thinking about us.

Also food parcels- I really appreciated people leaving me food that could be reheated as we weren’t allowed to stay at the hospital and had to come home for some meals. It was lovely to not have to think about cooking/prepping and just shoving something into the microwave.

My friend had her twins at 30 weeks. They are wonderful 8 year olds now.

I just made sure she knew I was there for anything at all, without putting any pressure on her. So I messaged her just letting her know I was thinking of her and the babies, and got in touch with her mum so she could let me know what was needed. It was mainly nice food for the parents, having a coffee with my friend when she needed a cry away from the babies, popping int her house to give it a clean and do her laundry etc.

Is she staying in the hospital too? Or has she been discharged? I agree with food parcels, new pjs or something too, little self care kits

@HenrysHome, I'm so sorry for your loss. You must be devastated. Xx

Messages will be good then. So normal to want to stay in her little cave now.
Some food treats of something a bit healthy too, I bet she is not thinking about her now bless.
Is she staying in one of those flats close to the NICU or at home with visits?

The most helpful thing for me was people offering lifts as I had caesarean and couldn’t drive for a while.

Just keep the lines of communication open, the one thing I remember from those days is your mind just focussed on the next test or the next procedure..it’s hard.

Lifts to places would have been the most valuable to me too.

I wanted to retract into my own little bubble too so visitors to see the babies themselves were not a priority , in fact it was a hinderence. Allow her to offer visits to see the babies, but don’t expect ykwim? Everyone’s different however.

Follow her lead, of messages are working for her just now, keep it at that and don’t press for anything.

33 weeks is a good point and one twin often has it harder than the other. As long as they have a non eventful stay, they could be out in a few weeks.

Oh yes don’t ask to visit babies, it’s such an emotional time that any pressure like wanting to see them would have sent my friend over the edge.

I met the babies when they came home and my friend had settled in and relaxed slightly. She was so much happier.

Healthy, hearty food and some nice hand lotion - the constant washing hands/alcohol gel makes them so sore.

I'm so sorry for your loss Henry'sHome. It's such a horrendous road you have to travel. It does get better although it never stops hurting. Look after yourself xx

Thank you everyone. OK - I will keep messaging. I live 50 miles away so it's hard to pop in but I am thinking I could send a nice food package.

She is discharged so is in an endless cycle of pumping and sleeping at home for 4 hours, going to hospital, staring at an incubator, going home, pumping, sleeping etc. It's just grim.

She doesn't have parents but her mother in law is there and being amazing apparently. Her husband too. Xx

@HenrysHome

Thank you for sharing your experience. I'm so sorry for your heartbreaking loss xxx

My dd1 was in nicu for 4 months.
Remember to check in - more to let her know you are there rather than ask qs. I found it exhausting having to update ppl all the time.

Food/ care package for mum - perhaps including a couple of books she could read to the babies. I lived off biscuits for 4 months so a supply of ready meals/ snacks that she could keep in the fridge in the parents’ room would be good. Also nice shampoo/ bubble bath. Hand cream because she will be washing/ sanitising her hands all the time. Etc.

PS I would agree with @HenrysHome. Offers of specific things (rather than here to help) are much more useful. I have found this both whilst in nicu and after my daughter died....it is emotionally exhausting and I didn’t feel able to think of what I needed/ ask for help.

So sorry for your loss @HenrysHome.

Thank you so much for your perspective @Robs20
Im so very sorry you lost your daughter
I will send her a package this week and keep checking in x

My twins came at 27 weeks and we were very devastated to lose one. The other was in NICU/SCBU for months but is fine now.

Agree that vague nonspecific offers of help aren’t actually that helpful. She will be in total shock at this stage and won’t know if she’s coming or going.

I found microwaveable ready meals/soups etc helpful. Audiobooks were brilliant for distraction and entertainment as it’s very boring there but also very sad. It would have been great to have had some cordless headphones so I could use my hands for kangaroo care/expressing. Also your hands get very dry from constant washing so hand cream is a great gift.

Some people bought us super tiny baby clothes which was really helpful, I couldn’t even think of shopping but actually dressing the baby in non-hospital clothes really helped me to bond. Another idea would be plaster kits for making moulds of the babies feet and hands. The little feet moulds of the baby we lost are one of the most precious things for us because we have very little else given she was only hours old when she passed.

The best thing one of my friends did was just keep in touch with little jokey texts every day. It doesn’t seem like much but it made me smile and laugh during the most horrendous time of my life and I’ll be forever grateful for that.

So sorry to hear of the other losses on this thread and hoping all goes ok with your friend OP