NICU Friends and Family Survival Guide

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NICU Friends and Family Survival Guide

Postby PixieB » Sun Jun 22, 2008 5:32 pm

I wrote this when Talia was 3 weeks old and we were just getting into the swing of our 3 month NICU stay. I though I'd share it with you as something to use to help NICU parents give their friends and family something constructive they can do to help. There are plenty of survival guides out there for NICU parents (I'm happy to put together one for here if you're interested), but there seems very little on how others can help the family. Feel free to take all or parts of this to use as suggestions for your own friends and family.

~~~~~~
A Survival Guide for the Friends and Families of NICU Parents.

This is just a quick brainstorming of ideas, not intended as a comprehensive guide though I may develop it more over time. As someone a little over 3 weeks into this rollercoaster ride I know there are a few things I appreciate from friends and family wanting to help.

- Frozen meals are one of the best helps, ideally in individual microwavable servings, good meals primarily for lunches. Something good and filling, your friend probably isn't thinking too much about their diet (other than guilt tripping themselves occasionally). Giving them meals saves them eating expensive junk from the hospital.
- Lifts to and from the hospital without the expectation of seeing the baby if your friend needed to have a c-section, NICU's often limit visitors.
- It feels a little awkward giving people money sometimes, but a donation towards petrol money or breast pump hiring can make a significant difference. If the baby was born prematurely the family may have been unprepared for the amount of leave they'd need to take so finances can be rather scary. And babies with disabilities often need a lot of extra help with equipment set up.

- Small amounts of social contact on their timetable, keep in mind that time is a bizarre concept when you're not working and you're spending so much time in the NICU. It'll most likely be you making an invitation of "Do you feel up to coming over for dinner tonight? I don't mind if you have to cancel at the last minute." Thinking more than a couple of days in advance is a serious challenge, but they'll need support to stay connected to their community and the real world. Burn-out is a serious risk.
- See if you can give them a night out as a couple to assert their relationship beyond being in NICU, or invite them to a small scale party where they aren't the focus and they don't necessarily have to entertain or repeat their story thirty times.

- Little text messages and emails to see how they're going and tell them you're thinking of them. Phone calls mean verbalising the same news over and over which gets exhausting. Text messages mean they can reply when they have time and energy for it. With their permission, forward on the baby's and the parents' progress on to others who are curious, and pass back well-wishes.
- Make something special of the photos they've been taking, like a web-based scrapbook or website where you can update where the baby is at for them so they can just direct family and friends to look at the website. If they don't have a digital camera, see if you can find someone to loan them one or pool together with other friends to buy them one. Those photos will become precious treasures.
- Do your own research on conditions the child develops so they're not having to answer the same questions over and over, and try to become a little familiar with the terminology and equipment used. If you do put together a webpage, put links to medical websites or summaries of the conditions to help others understand what's happening.

- Help them celebrate the milestones, it's so important to share and make a big deal of every little positive you can find with them.
- Offer to clean the bathroom or the kitchen for them. Asking what you can do to help is a little too broad and overwhelming. Offering something specific they can just agree to is so much more helpful.
- Give them something special and meaningful as a present to them. Let your friendship with them dictate what you give them, but it's important to acknowledge them as a living human, not just a parent.

- Keep in mind this is a long term journey for them, they could be in hospital for a very long time. And it doesn't end once they leave hospital. Touch base after the rush of everyone wanting to meet the new baby and wanting to see the new baby once they get home.
- If they seem to need space, give it to them, and see if you can help maintain their breathing space too by asking others to hold off on visiting just yet.
- Call before visiting, and be understanding if they refuse.
- Understand that if the baby is in intensive care then visitors will probably be severely restricted, probably just to the parents, siblings and maybe grandparents.
- If the family already has children, babysitting is always welcome as it allows both parents to visit their new baby together without worrying about an underfoot bored toddler playing havoc with the electrical cables and monitors.

- For all the complications, these parents will love their baby, help them celebrate the birth in a positive way, especially if it was traumatic. Put a birth announcement in the newspaper, make cards with photos to send out to share the joy at the baby arriving. It's easy to get lost in the equipment and medical terminology and problems, anything to help them focus on the positives is important. Ask them for the precious stories of what their baby does to help step them out of the medical side of things and love their baby.
- Take their requests for health and hygiene care very seriously as any illness you have could easily be passed onto the fragile baby. If the parents get sick they may be excluded from the NICU and unable to see their baby. So if you're sick, make your apologies and stay away, even a small cold can become a major drama for a NICU bub. When you visit them (even if the baby isn't home yet) wash your hands when you arrive, this helps significantly in reducing cross infection.
- Ask them what they need. There's likely something I've missed here and every baby and family is unique, their needs will be utterly unique too.

This is a traumatic time for everyone involved, and it's the little things that make a difference. I hope this list is helpful and would welcome suggestions to add to it.

-Pixie, 8/8/07
Last edited by PixieB on Sat Dec 26, 2009 8:52 pm, edited 1 time in total.
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby PixieB » Sun Jun 22, 2008 5:53 pm

As an addendum to this, from another forum I'm on we brainstormed a list of "What Should People Say" to a new NICU parent. So many people are so awkward about what to say that they end up saying nothing, or something completely insensitive, and the new parents need as much support as they can get.
(Please forgive me for just copy-pasting the various suggestions)

For instance, every parent's proud of their child, parents of premmies and children with disabilities are no different, in fact, because our kids have been through so much we're often prouder of their achievements because we didn't automatically take them for granted.

Celebrate our child's birth! Send us cards, flowers and gifts. We had a baby, it doesn't matter what the circumstances of their birth is.

"Congratulations!!!!!" would be a good start! Closely followed by "What a lovely name"
"I bet s/he is gorgeous, please email me photos!"
"I've made you a lasagne, how soon can I bring it over?"
"Do you have clean clothes? Would you like me to wash for you?"

"Is there something I can get you from the supermarket?"
"Would you like something other than hospital food for dinner?"
"Can I bring you some books or magazines?"
"Is there anything you need?"

Don't be afraid, I don't have any weird diseases or infections, I only want a hug.

"Haven't they got beautiful tiny little feet!"
"I love her little turned up nose"
"It's amazing how strong someone so tiny is"
"You're doing so well, I'm in awe of your strength in coping with this."
"I found these prem sized clothes online, what colours would you like them in?"
"She's definitely got your fingers/ frown/ whatever feature."
"I've been reading up on prems and found these amazing success stories/ support groups"
"I cleaned your kitchen for you, do you need some freezer storage space for a few dinners?"
"I've gotten you a voucher for a day spa"
"What's your favourite thing about your baby?" :arrow: this one focusses on the positives and shares the parent's joy.
"Isn't it amazing how much they've grown! You must be so proud!"

Marvel at the photos showing their growth.
Be interested in the medical technology and make an effort to remember what it's all about.
Focus on the baby rather than the medical paraphenalia, the technology can be overwhelming, but the baby within it all is so beautiful and so precious.
Remember how much each parent has invested in their baby, if their child is in intensive care, all of that emotional investment, energy and love is very raw and at risk. They'd give anything to be able to just hold their baby, but are often told that too much touch can be detrimental. Help them hold onto what they can do for their baby.
Acknowledge the parents' grief and just let them vent, sometimes they just need to be angry at all they've missed out on and how things have gone wrong, they can't be positive all the time.

Whenever I meet a new parent of a bub with SN's or a prem I always fuss over how clucky they are making me and how gorgeous they are, even if you can't really see them for CPAP, etc... it makes a big difference.

I would have loved it if we were invited over to someones house for dinner a few times whilst our baby was in hospital.. Would have done us good to have a break..

Sometimes you just need money.
That being said, I would have loved a gift card for petrol or a train ticket etc.
The other thing I really would have liked was somebody to offer a nights accomodation in the city where the NICU was (many parents have to travel away from home to be with their NICU baby).

And one thing in the what not to say:
Please avoid the "Just be thankful you're not getting up to a screaming baby"; waking to a screaming baby is far preferable to peering through a perspex box at a hospitalised baby you're not allowed to touch. Actually most "You should be thankful"s come across as holier than thou and belittle the new parent's current experience. They're going through enough already without being told they should just be happy.
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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preemie

Postby babymagik18 » Wed Jun 25, 2008 6:44 pm

gg
Last edited by babymagik18 on Sat Jul 31, 2010 3:26 am, edited 2 times in total.
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Postby PixieB » Sun Jun 14, 2009 1:44 am

I'd like to add some more considerations to this:
~Always be convinced that the baby will come home. Every positive effort counts and the parents spend more than enough time dwelling on what can go wrong already. They're very aware of the risks, let them cling to the hope with all the help you can give.

And
~Keep in mind that when the family gets their baby home they may have some very strict restrictions. These aren't things to be taken personally, they're to protect the baby's health and the parents' sanity, give them a chance to properly bond with their baby as their own.
~NICU babies who've just come home may be on O2 and tube feeds still. They're still fragile and highly susceptible to every bug around them.
~If you're sick, don't visit, hospital or home.
~Always wash your hands when you arrive at the home/hospital for a visit, whether or not the baby is there. This requirement may continue for 12months or more, the parents aren't being over-protective. A ridiculous proportion of prems are re-hospitalised within their first 12 months at home, that statistic could be significantly reduced if more people washed their hands.

~And if the mother needs to duck away to pump, don't delay her. That milk could well save her child's life and she needs every support and forgiveness you can give to encourage her in milk production. It's hard and exhausting work, and does involve getting up during the night to an alarm and a pump rather than a crying baby. Many mums of NICU babies struggle with milk supply because they're under so much stress and it's very hard to keep the necessary routine.
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
http://pics.livejournal.com/littlebutto ... y/0000scpq
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