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How to support family of a NICU baby


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#1 Mose

Posted 02 September 2018 - 01:46 PM

Close relative had a daughter at 29 weeks by emergency caesarean last night. Baby has been, and mum in process of being transferred to hospital approximately an hour from their home, and about twenty minutes from ours.

Also have two primary school children at home.

If you have been through the NICU experience, please share with me:
- what things people did or said that were helpful
- what things people did or said that were unhelpful
- what did you wish someone would do for you during that time?


#2 Riotproof

Posted 02 September 2018 - 02:05 PM

Oh Mose, I'm sorry for your friend.

Things people said that were good, saying congratulations, she's beautiful but not going on about it like it was completely normal and everything would be fine. Being interested in the small developments.. not on oxygen anymore, for example.

For the older kids, maybe babysitting so they can be bedside?

What I wish people would have done is offered to drive me there when Dh was back at work. I'm sure I drove sooner than I should have in a desire to be with her.

Friends gave us emergency entertainment (colouring books) and food snacks, coffee sachets for the kids and us. And handcream, hers will be raw with all the washing.

Wishing her the best. Girls do tend to fare better than boys when born prematurely, but don't share that without testing the water first.

#3 Mooples

Posted 02 September 2018 - 02:12 PM

A friend of mine really liked it when I would visit and have lunch with her during the mandated 1 hour no visitors time. It gave her someone to talk to and keep her mind off her bub for a while. When my baby was in scn I didn’t want any visitors so it definitely varies from person to person so ask her what she would prefer.

I broke down whenever anyone asked me how I was or if I was ok. My baby wasn’t in my arms so no I wasn’t ok. Be gentle with how you speak to her which I’m sure you will be.

#4 Bethlehem Babe

Posted 02 September 2018 - 02:18 PM

My sister was in a similar situation.

Her friends gathered a roster of dinners for the family. Each night a dinner would be delivered.

Also useful was a once a week or so delivery of fruit and veg and cereal, tea bags, loo paper etc. so they didn’t have to go grocery shopping much.  

Lots of time on the phone.

#5 .Jerry.

Posted 02 September 2018 - 02:29 PM

Helping keeping the house going at home would be best.

I was lucky in that I didn't have another child, so nothing to organise at home.  I imagine having dinners cooked for home and babysitting help would be high priority so mother can be at hospital.

As for gifts, buy whatever you would normally buy.  I got few gifts and cards as people were too worried.
(about my 27 weeker)

Things that you need in a NICU:  snacks, moisturiser (that hand wash they make you use if brutal), magazines to read etc.

A 29 weeker is a good size. Barring other health issues, the baby should do just fine and hopefully can be transferred back close to home in about a month.

#6 IamtheMumma

Posted 02 September 2018 - 02:38 PM

Offer to do her laundry/take her shopping for necessities.
Make lunches, dinners and snacks.
Be her taxi
If she has older kids, offer to take them out and about. Even have a sleep over with you so she can have some down time.

All of that is variable and some of it will be the exact opposite of what she wants. I do think she'd like the laundry done. Even though places close to the hospital will have laundry facilities, her mind is elsewhere. She will be grateful that clean underwear just shows up.

Edit - sound out your friends to see if there is a breast pump she could borrow. The hospital will have them for while she is on the ward but it may not be so easy once she is moved to a hostel. Ask what type the hospital use and see if a friend has that. She can get supplies from the hospital to use with that pump.

Edited by IamtheMumma, 02 September 2018 - 02:42 PM.


#7 Bethlehem Babe

Posted 02 September 2018 - 03:11 PM

Many Home breast pumps are designed for single person use. For a nicu bub, I wouldn’t risk it. I’d go to aba, local chemists in stead for a hire of a hospital grade pump. Some hospitals will discharge mum with a pump too for Nicu babies b

#8 Mose

Posted 02 September 2018 - 03:16 PM

She did have the Medela Swing. I know because it died on my watch with DD. I replaced it but then gave it away because we were all so very definitely done with having babies!!

Will definitely offer to replace it if it's what she needs.

#9 gc_melody

Posted 02 September 2018 - 03:25 PM

This is going to be a roller coaster of a ride for your friend OP. It is a brutal experience and there's very little which I imagine anyone can feel so completely raw emotionally. That's the way I felt anyway.

* Others have made some great suggestions. I can't second more enough the non-scented hand moisturiser. The constant hand washing makes your skin like sandpaper with the stuff they use in the hospital.

* Congratulate your friend. She had her baby ! But like PP said, don't make out all is normal because there is nothing normal about the NICU or SCN journey.

* Sound out your friend on what dinners are family favourites and cook those. Even better if they are freezable and you can cook some in portions for defrosting. Your friend and her partner will appreciate not having to think about cooking.

* Ask if it would be ok to take photos. Your friend may not want them taken but it's something I wish I did.

* Maybe buy her a special diary she can write her thoughts in, record baby's milestones and stick photos in for later. It helps to keep the faith and remember to celebrate each success, no matter how small and something to look at when baby is older to see how far they have come. I wish I had done something like this for myself.

* Offer to take care of her older children and looking after them (pick ups/drop offs/hang out time) will be much appreciated.

* Something my friend did for me when I came home with DS which was out of the ordinary but so, so appreciated was borrowing DVD's of TV series from the library. She would drop off a care package each week and collect it for returning the following week as she delivered another set of DVD's. It was a much needed sanity saver when feeding and pumping every two hours.

* Hiring a hospital grade pump for her if she wants to and can get BFing going would be awesome.

Most of all, just be there when she needs you. Keep checking in gently and making the offer of support. I wish your friend and her baby a smooth and uneventful journey.

#10 .Jerry.

Posted 02 September 2018 - 03:37 PM

I was able to claim hire of hospital-grade breast pump on PHI.  They fully paid it for me.
Might be worth mentioning if friend has PHI.

#11 AliasMater

Posted 02 September 2018 - 04:04 PM

I've had 2 long stay newborns.

Honestly, cards and presents are unnecessary. I would not have needed precooked food or help with laundry. Baby sitting for siblings, yes.

What I remember most though were the messages and visits. People I hadn't seen or heard from in years came to see us and DS, and/or sent regular messages. At thd same time some of my best friends went completely MIA.

It was the same when I had a serious car accident 2 decades ago. Acquaintances, customers from work, neighbours etc came to visit. Some of the people I thought I knew well and were friends with, could not find one day in 2 months to stop by.

They are the things you don't forget. Those that were there and those that weren't.

#12 .Jerry.

Posted 02 September 2018 - 04:10 PM

Having a chuckle here, as I absolutely would have hated visitors when I was with DD in NICU.
I would have hated having to do small talk with an acquaintance or even someone I considered a friend.

Family was hard enough.
I just wanted to sit with DD and get through each day.

But I would have liked hand cream, food, magazines.


Also OP, tell your friend to keep a diary or blog.
I wish I had.

#13 Crewdy

Posted 02 September 2018 - 04:18 PM

My little one was a bit further along when born (33 weeks), but I know that I really appreciated when another mum passed on a meal voucher she had been given but never used. There were no restrictions on visiting hours at our hospital, but it was great to know I could duck out for half an hour to get something hot to eat from the hospital canteen, without having to worry about adding to all the other costs of spending so much time at the hospital each day. I also liked reading to my little one once he was moved into an open cot, so a lovely new picture book might be nice (but I know it wouldn't suit everyone).

Also, definitely get some things to keep older kids quietly occupied. My 12 year old stepdaughter was great and wanted to be in the hospital with us, but was also bored a lot of the time.

#14 livelifelovehappy

Posted 02 September 2018 - 04:35 PM

I was in this exact situation (different gestation and issues, but far from home and having to live in the hospital's emergency accomodation after I was discharged).

Bring nice meals to me (that can be heated in a microwave). One friend did this, and just dropped them off while I was sleeping, you don't have to stay and it can be overwhelming. I had two friends bring me nice dinner and we sat and had it together in the courtyard. That was really nice.

Bring me a warm jumper/slippers (it was an emergency where I went for a check up and scan at the hospital and then didn't come home for a month, and I had very little in the way of clothes). Bring some supplies like laundry powder and toiletries if they don't have that and plan to live at the hospital.

Babysit my older kid to allow my husband to come and be with myself and the baby (this was the hardest part, we had nobody to help us and so I barely saw them).

Bring me books to read.

Take me for a coffee outside the hospital but close by (and talk about something else).

Bring my other child to visit me.

Offer to come and meet my baby in the NICU.

Say congratulations and offer to take pictures of my baby and I together. Tell me my baby is beautiful.

Coordinate one person to update interested people so the parents aren't bombarded with enquiries.

Don't say: what can I do to help? Just come up with an idea and do it. That's probably the best advice. The person is so overwhelmed they can't think of anything and don't want to ask. If it's just done, it's easier to accept.

Edited by livelifelovehappy, 02 September 2018 - 04:42 PM.


#15 Franny and Zooey

Posted 02 September 2018 - 04:55 PM

My daughter was only in NICU for ten days but I did really appreciate the people who came to visit.  I was lucky enough to be able to stay in a parent room at the hospital for that period while my other child was with his dad at home.

#16 Luci

Posted 02 September 2018 - 05:18 PM

I have 3 children. They were all born full term but I have had some experience with staying in hospital with them (one at a time as older children).

What I found the most helpful was help with the older kids who were at home with DH.

If possible could you try to find out from your friend what would be most useful to her in terms of assistance.

Luci

#17 Sweet.Pea

Posted 02 September 2018 - 07:56 PM

I hated it when people would say he was small...um yeah I'm aware of that! He is supposed to be in my stomach still!

I also didn't like visitors. There was a limit on the number of people next to the bed, which was 2. If people came, then either me or his Dad had to leave. Some people treated his birth as a normal baby so expected their time next to him. It was a constant battle, even after explaining there would be plenty of time when he came of home and if I didn't have the emergency I would still be pregnant.

#18 gc_melody

Posted 02 September 2018 - 08:01 PM

View Postlivelifelovehappy, on 02 September 2018 - 04:35 PM, said:

I was in this exact situation (different gestation and issues, but far from home and having to live in the hospital's emergency accomodation after I was discharged).

Bring nice meals to me (that can be heated in a microwave). One friend did this, and just dropped them off while I was sleeping, you don't have to stay and it can be overwhelming. I had two friends bring me nice dinner and we sat and had it together in the courtyard. That was really nice.

Bring me a warm jumper/slippers (it was an emergency where I went for a check up and scan at the hospital and then didn't come home for a month, and I had very little in the way of clothes). Bring some supplies like laundry powder and toiletries if they don't have that and plan to live at the hospital.

Babysit my older kid to allow my husband to come and be with myself and the baby (this was the hardest part, we had nobody to help us and so I barely saw them).

Bring me books to read.

Take me for a coffee outside the hospital but close by (and talk about something else).

Bring my other child to visit me.

Offer to come and meet my baby in the NICU.

Say congratulations and offer to take pictures of my baby and I together. Tell me my baby is beautiful.

Coordinate one person to update interested people so the parents aren't bombarded with enquiries.

Don't say: what can I do to help? Just come up with an idea and do it. That's probably the best advice. The person is so overwhelmed they can't think of anything and don't want to ask. If it's just done, it's easier to accept.

Totally this. I didn't want to see anyone either but I would have LOVED a friend do all to all these things.

Edited by gc_melody, 02 September 2018 - 08:01 PM.


#19 Manicmum

Posted 02 September 2018 - 08:18 PM

I’m addition to what’s already been mentioned:
A pen and a journal.
The smallest clothes you can find. A bonds 00000 is ok.




#20 FretfulMum

Posted 02 September 2018 - 09:40 PM

Congratulations to your friend!

DS1 was born at 30wks and spent 10wks in hospital so I know the roller coaster that’s ahead dor your friend. As others have mentioned bringing reheatable meals was the best and cleaning the house/looking after animals was amazingly helpful. Something that my husband or Mum did was print off some photos of DH & I so that we could stick them on the outside of DS’ incubator. It made it feel like we were always watching over him even when we couldn’t be there.

The thing that absolutely wore me down was people asking ‘when is he coming home!?!’ It just broke me in the end as DS1 made such slow progress and seemed to have one complication after the other. I just felt like screaming ‘I wish I f***ing knew, so stop asking!’ I was pretty much an irrational mess by the end of his hospital stay.

All the best to your friend

#21 luke's mummu

Posted 02 September 2018 - 09:51 PM

I have a friend who had a baby at 36 weeks, and she insisted no visitors  except the parents were allowed near the baby until 40 weeks due to germ risk. Actually, her son is 4 and she still is quite germ-phobic. So I would ask re visitors but be aware she may prefer none.

#22 AdelTwins

Posted 02 September 2018 - 09:57 PM

Looking after the primary aged children would be my main focus. Pick up and drop off for school, help with homework, take to sports/parties, prep meals.

DS1/2 were in Special Care nursery for 20 days. I was there from 8am until 9-10pm or so. It was just us so I could do that without too many issues.
I only had 4 days in hospital when DS3 was born and it was a real struggle. DH wanted to stay with me, but it was really hard with 2 at home.

#23 ~J_F~

Posted 02 September 2018 - 10:05 PM

I think its really important to sound your friend out.

Lots of great suggestions here but a couple, I have experienced the opposite of.

My friend needed us to pretend it was all normal and the baby would be fine and come home, she was dealing with so much that she needed us, her friends, to pretend that it was going to all be ok. She needed to talk about coming home, it didnt happen for them but she needed to hold onto to it while she could. We gave her that.

I found just being myself and including her in just normal life stuff was appreciated. I would send funny memes that I seen or stupid things that happened at home or the schoolyard gossip, that kind of thing. It kept her included in all that was going on.

Be ready to bring chocolate and booze and just be there to sit in silence when she needs it.

Just be her friend, dont desert her in this time of need, she will be the best guide in what she needs from you.

#24 Mose

Posted 03 September 2018 - 01:56 PM

Thank you all.

As a tip for others, they aren't on display, but if you ask at Pure Baby, they have onesies, booties and hats to fit premmies in up to 1kg, up to 2kg and up to 3kg sizes.  And do exchange cards with a two month return period.

I will confess to having cried when I saw the up to 1kg onesie, and the lady was so nice.  I then bought the 2kg one as I figure if bub is just over 1 now, she should hopefully be starting to think about needing clothes by 2kg.

I have arranged a babysitter for my kids so I can go talk to my friend later in the week and try to get a gauge for what will be most helpful to her, but I really appreciate the suggestions above - it gives me some good ideas of what I can offer, and if she says no that's absolutely cool, but I think some specific ideas will probably be more useful than a general "tell me what I can do to help", which as someone says above, puts the onus on her to work out what she needs.



#25 Riotproof

Posted 03 September 2018 - 02:00 PM

You’re a good friend, Mose.

Kmart, Target and BigW do have 00000 sizes now. Dd was 1.3 kilos when born and left hospital at 2.1, so you are right on the money with that sizing.




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