Note: this is part two in an ongoing series about life as a long-term NICU parent. Find part 1 here.
Before we had kids, our friends’ daughter was in the NICU for heart surgery. They were almost 5,000 miles away and nothing seemed helpful to send, so we did absolutely nothing while the time slipped by. She healed and is an unstoppable toddler now, but letting her parents go through that without helping at all remains something I regret.
Our sons lived in the NICU 122 days. My husband avoided the hospital at all costs, and I functioned in survival mode, so parts of everyday life fell by the wayside — the house fell apart, I couldn’t pay bills, it was tough to pretend to be “normal.”
The NICU has been described as a roller coaster. Every good moment was followed by a bad one.The hospital where my boys stayed had an excellent support system, but it was still a lot to deal with. No matter how self-sufficient we were before the NICU, during and afterward we needed help. But, when we were stuck in the middle of the situation it was tough to articulate just what we needed.
Everyone is different, but chances are that something on this list, compiled from my experiences and those of other NICU parents, would be helpful for the NICU parent you know. Doing a single thing, no matter how small, makes a big impact. Please learn from our mistake and don’t wait for your friend or family member to ask for help, just do one thing.
If you don’t know the NICU parent well but want to do something helpful, donate blood. Two people’s blood donations supported my twins until they were big enough to make their own efficiently.
Be a good friend
If you know the NICU parent well, the most important thing you can do is be there even though it may not seem like much at the time. You don’t have to say anything profound. Just be there. This is especially important when things go wrong. The NICU experience is tougher than it’s shown on tv, and there are far fewer happy endings. Be there for those moments when words are useless, even if you are far away.
Cut parents some slack
Parents try to get by as their child swings between life and death. I used to spend a minimum of eight hours at the NICU just for the chance to touch each of my children once, and it was weeks before I could hold them. It’s emotionally and physically exhausting, and it’s tough to remember little things like small chat, appointments, meetings, thank you cards, etc. I once sent a thank you to a friend, who messaged me insisting I never send her another thank you card. It was a huge relief.
Cut NICU parents some slack, and understand that it takes immense amounts of energy to even present the impression of normality.
Celebrate those little Milestones
Preemie milestones are different from regular baby milestones. The tiniest things make a huge difference, but because people don’t know how huge they are, they don’t celebrate them. Take your cues from the parent, and congratulate them when the moments arrive.
Help build and maintain a support network
I was fortunate to already have an established group set up online for friends interested in my pregnancy when I went on bed rest. People did all the things we do in person to build a community around someone in pain, just online. If I didn’t understand something from rounds, people with medical backgrounds stepped in and explained.
They performed kind acts on this list despite being hundreds of miles away. So, despite having no friends in our physical community, I was surrounded by love and hope. Helping build or grow this type of community for your family member or friend with a child in the NICU can make them feel less isolated.
Help with chores
When your baby is in the NICU, you want to spend every waking minute you can with them. Cooking, cleaning, weeding, etc takes time away from that. I struggled to do the bare minimum. Not having to do even one of those chores would have let me have 20 more precious minutes with babies I wasn’t sure would survive.
So do a load of laundry, run the dishwasher, mow a lawn, harvest a garden, or gift maid service. Anything like that gives parents extra time with their child.
NICU parents don’t seem to take care of their own needs, but people have to eat. Dropping off food is a great way to make things easier. If you cook, make extra helpings and put them in a microwavable container for the parents. If you don’t cook, take over something from store that they can heat up, order take out, or utilize a meal delivery service if you are far away. If you do take food, an extra kindness is to include disposable utensils because that makes it easier to take the meal to the hospital if necessary.
Help with Pets
While I was at the hospital, my husband took care of our cat who needed medicine twice a day. When he travelled for a week, I had to cut my visits in half and come home to a lonely house that echoed of halted nursery preparations. If we had friends nearby who could have fed and drugged the cat, I could’ve just stayed at Ronald McDonald House and spent time with my sons.
Feeding a pet, walking a dog, checking in on a cat. . .these are small things that can mean a huge difference.
Help Set Up The Nursery/Car Seats
If you take the time to help set up the nursery, it takes another responsibility off the new parents’ shoulders and gives them more time to spend at the NICU. Or, offer to swap cars for the day with your friend, and take the car seat to a fire station to be installed. It’s another chore your friend won’t have to worry about and it’s free.
Buy a gift card or give cash
Gas cards or cash are perfect for parents because transportation costs add up fast. In the months my sons were in the NICU, my commute cost us $2,400. We hadn’t budgeted for this or for my lost wages.
Even without the financial hardship, it’s hard to remember to do little things like fill up the gas tank, eat, or hit the ATM when your mine is occupied. Having a gas card or extra cash in a wallet “just in case” is nice.
Help with a place to stay
A nurse or doctor at the NICU should talk to the parents about the Ronald McDonald House. Though affiliated with McDonalds, RMHs are nothing like the fast food chain. RMH is a healthy, safe, friendly, family-centered home for parents when their children are in the hospital. If you know that the NICU parent is staying at a RMH, call and donate a night’s stay for the person–you can do it anonymously. One night is anywhere from $15-$25, but not having to pay is a huge weight off that parent’s back.
If there is no RMH in the community, you can help by donating money for a hotel. Staying near your NICU baby is really important and for the baby and the parent. I cannot emphasize enough how awful it was to get a phone call that my child had just had a life-threatening crash and know that I was an hour away. Staying nearby can mean time to say good bye, or time to see your baby before emergency surgery.
Help with Older children
I have no idea how NICU parents with older kids survived. These families juggled the emotional and practical needs of older children with the needs of their NICU babies and their own emotional roller coasters.
To a person, each one spoke of the incredible people who helped with their older children by babysitting, hosting sleepovers, or taking them out for fun. If your child’s friend has a little brother or sister in the NICU, consider offering to have that child sleep over regularly or hosting him or her after school and for dinner to allow parents to spend time with their baby in the NICU or get much-needed sleep. Doing this lets the friend spend some time in a “normal” home where tragedy doesn’t lurk under the surface.
A particularly helpful option is to take older siblings on a play date close to the hospital. Most hospitals limit visitors to those over 12 years old, and don’t allow any minors to visit during flu season. A playdate near the hospital means parents can visit their baby while the older sibling gets a chance to feel special, since he or she is often overshadowed.
Preemie clothes that actually fit
Micro-preemies tend to be long and thin, so the preemie outfits you get at stores like Babies R Us make them look like flying squirrels (late term preemies and those with ostomy bags, fit those outfits well, though) If your friend has a baby who is thin, consider shopping at an online store that specializes in micro-preemie clothes. Here are my three favorite: JPP, PP, TP.
No matter where you get your preemie clothes, make sure that the clothing does NOT zip. Zippers get in the way of all the wires and monitors–snaps and velcro are wonderful things.
In all the uncertainty and fear that surrounds the birth of a micro-preemie, it is easy to set aside the fact that these parents have just had a baby. You may feel uncomfortable sending a gift or congratulations card when the birth of the child is tinged with sadness, but please send the gift or card anyway–it is so rare to feel like a “real” parent when you have to watch your child through plexiglass, and ask for permission to touch or hold him. A card or gift like one would have at a normal birth helps remind parents of the joy of their newborn.
Get a Gift for the NICU Nurses (chocolate is good)
Nurses keep our children alive, often know them better than we do, and pretty much run the NICU. I didn’t have the time or money to get them anything. So, it was nice when an aunt and uncle purchased an edible arrangement thanking them. You don’t need to get that fancy: pretty much anything chocolate disappears quickly (Note: I’ve met preemie parents who hated their nurses, so only do this if your friend likes their nurses).
Help with transportation (at least at first)
Most preemies are delivered via c-section because delivering them vaginally is too dangerous. For the first weeks after the c-section, mothers are not permitted to drive, but many will just to be with their babies (I am guilty of this). You can help your friend be safe by driving her to the hospital and/or home.
Get little things to help parents survive the NICU.
The NICU operates 24 hours, so often by the time the parent leaves the hospital, stores are closed, and they’re exhausted. You can make their experience easier by dropping off any of the following little things to help:
- Magazines & books – Because of HIPAA if the nursery is an old school open one, parents can’t be in the nursery while doctors are rounding on other children. This results in long waits to see their child. Something to read helps make that time less worrying.
- Books to read to their baby – Reading to a baby is one of the few “normal” things NICU parents get to do. But don’t limit yourself to baby books that take 5 minutes to read because parents are often there for hours. I ended up reading The Phantom Tollbooth, Emma, and an anthology of Mike Royko columns (if they grow into grumpy old white men, it’s on me). My husband read Car and Driver Magazine. I’m not saying don’t get children’s books, just consider getting something parents want to read too.
- Amazon (or other online store) gift card – I’m all for supporting local businesses, but Amazon is available 24/7 and delivers.
- A nice water bottle — Moms are constantly told to hydrate so that they can more easily produce breast milk, but often aren’t allowed drinks in the NICU, so a water bottle they can swig when out of the nursery is a great solution.
- A small cooler bag for breast milk – Every 4 hours, I pumped. It was one of the few things I could do to help my babies. A cooler bag lets that milk stay fresh on the way to the NICU, where it goes in the freezer until the preemie can use it.
- Hand lotion (antibacterial is awesome) – In the hospital, parents wash their hands constantly. My hands got so dry they cracked. A small bottle of hand lotion that fit in a purse was wonderful.
- Hand sanitizer – Hospitals are breeding grounds for bacteria and viruses, and parents cannot visit their baby if they have even a hint of sickness, so sanitizing after shaking hands or hugging friends is important.
- Portable Snacks – Often NICU parents forget to eat, and hospital cafeterias are expensive.
- Notebook/journal – I went to rounds and wrote down everything I could. Later, I asked the nurses to explain it. Doing this let me make sense of the crazy language and customs of the bewildering world of the NICU. Journalling is also a nice place for parents to pin down fears and articulate their emotions so they don’t eat them alive.
Button up shirts a size too large – I stored a button up shirt in the drawer of my son’s isolette so that if I got there and found out one or both could kangaroo I was always prepared. The best kangaroo care shirts are cozy and soft: zip front hoodies, button up flannel shirts, think teddy bear innards and you’re close.
- Cute art/framed pictures for shelves near the isolette – for a few months, this IS the equivalent of the baby’s nursery, and most hospitals will allow parents to put one or two personal touches up. If your friend’s hospital does not, a personalized blanket for the isolette is a nice touch. If the baby is older, a simple black and white head shot of family members is nice to tape to the inside of a crib.
- Do you knit? Make something. . .a hat is good, blankets are great. It will make that crib or isolette more like home.
- Travel sized toiletries (tooth brush & toothpaste, hairbrush, kleenex, chapstick, gum, wet wipes) – This allows parents who spend their waking hours either at the hospital or going to the hospital to take care of their hygiene easily.
- Disposable digital camera (used one off of craigslist or something is fine) – A cheap digital camera lets nurses take pictures of the baby when mom and dad can’t be there. I learned the hard way that the camera must be digital. If the baby gets multiple X-rays and a film camera is stored under the isolette, the pictures get ruined. Ours did.
That’s all I’ve got. If you have your own hospital experience or ideas, please share them. If you’re looking for ideas, I hope this helps. More than anything, please remember that just doing one small thing can make a huge difference during those long weeks of on the NICU rollercoaster.