Last week I became a March of Dimes Mom (my picture and bio aren’t up yet because I haven’t found a picture I like!). I am so honored to be able to give back to the community that did SO much for Mike and me when we were dealing with Madeline’s gestation and hospitalization. Once a month I’ll be blogging about the issues that Mike, Madeline, and I deal with due to prematurity. You know…pretty much like I already do!
The number one email I get is “I have a friend/cousin/neighbor with a baby in the NICU. What can I do for her/him?” After receiving three emails like this in the last four hours, I thought I would post my advice here. As with all advice, take it and adapt it to your friend. Everything I’m suggesting was what MIKE and I needed – it might not apply to the person you know in this situation. Disclaimer, shmishclaimer, let’s get on with it.
Things you can SAY:
- Say Congratulations – this might seem like a no-brainer, but I can count on one hand the number of people that congratulated me on becoming a new mom. A baby is an amazing, joyous event, and should be treated as such.
- Ask questions. Just like you would ask a mom with a healthy baby how breast feeding & weight gain is going, ask a NICU parent how their baby is doing. Don’t be afraid to ask what acronyms and medical terms mean. The parents will be happy to talk about their child – it makes the baby more real, more THERE, even when the baby is miles away.
- Ask to see pictures – just like you would with a healthy baby.
Things you should NOT say:
- “When can I see the baby in person?” No one wants to show off their baby more than new parents. If they are comfortable bringing you into the NICU to see the baby AND the baby is healthy enough, they will practically drag you back there.
- “When is the baby coming home?”As soon as the parents know, YOU will know.
- “She’s going to be okay.” Do you have a crystal ball? That’s what I thought. You DO NOT KNOW the baby is going to be OK. Believe me. TRUST ME. Infections are the dirty secret of the NICU, and they can hit any baby at any time. They are MAJOR, sometimes life-threatening setbacks.
What you can DO:
- Offer to help. Volunteer to: walk dogs, do laundry, bring books & magazines, lend a computer if the parents don’t have a laptop, Google medical terms, print up NICU terms, babysit older kids, send cards, start prayer groups (should you be so inclined), pick up pumping supplies, be another set of ears when the parents need to hear important information – this could go on and on. Just BE THERE for your friends however they need you.
- Sit in the waiting room, especially during a procedure.
- Meet your friends for dinner in the Hospital Cafeteria. Better yet, BUY them dinner. BEST, BRING them dinner. Most NICU parents forget to eat. This is obviously not good, ESPECIALLY if the mom is breast feeding. If you make an appointment to eat with them, they will have to eat something.
- If you can’t be there in person, call or email. You might not get a response, but it will definitely be heard and appreciated.
- Offer to be the mom’s chauffeur. In my case, I’d just had surgery and wasn’t cleared to drive. Mike often went to the NICU first thing in the morning, but I had to stay home to pump and recover. My friend Brianne took me to the NICU and I was SO grateful.
- Be the spokesman. The parents will have MANY people that want to know how the baby is doing. Offer to be the point person. Answer questions, email updates, keep everyone else informed.
What you can BRING:
- Comfortable clothes, especially for the new mom who just gave birth. NOTHING fits her. Bring her yoga pants, sweats, anything she can be comfortable in.
- Button-down shirts and zip-up hoodies. These are AMAZING for when parents practice Kangaroo care.
- A disposable camera to leave at the baby’s bedside so the nurses can take a picture of the baby when the parents aren’t there.
- Gifts for the nurses. Nurses run hospitals – doctors just drop in. The parents will soon realize this, but they will have a hard time getting out of the hospital to get stuff for the nurses. Help them by bringing cookies, cakes, etc.
- A NICU Parent Care Kit. These are some of the things Mike and I had, or wish we had:
- hand lotion (EXTREME CARE)
- chap stick
- antibacterial lotion
- energy bars
- gum, mints, mouth wash
- tooth brush & toothpaste
- disposable camera
- gift card to baby store
- hospital parking pass (most hospitals offer long-term parking options, but it’s still pricey)
- wet wipes
- energy bars
- BOOKS (Maddie’s favorites are Goodnight, Moon and Madeline)
- oatmeal cookies (oatmeal is good for breast milk production)
- a notebook & pen to be a journal of thoughts, treatments, etc
- The Dad. Mike heard countless times, “Oh, your poor wife.” As if he wasn’t also suffering! The dad’s baby is sick, too.
- The NICU is a roller coaster, and just because you got good news from your friend yesterday doesn’t mean you’ll get good news today. Be prepared for any kind of update.
- Be the kind of friend your friend needs. Some people want optimistic friends, some want realistic, some want silent pals, some want comedians, and some want all of the above. Know your friend, and LISTEN to what he or she needs. And then BE what s/he needs. Even if that means being the realistic friend when you’re normally Pollyanna. Even if you have to make fart jokes when you’re normally quoting statistics. Even when you have to admit that the baby might not make it. Especially then.
- Don’t tell the parents how scared you are. THEY ARE MORE SCARED.
- Saying something is always better than saying nothing. Get over yourself and contact your friend. They will remember that you didn’t. Yep. THEY WILL REMEMBER.
In the end, you know your friend/cousin/neighbor the best. Do what feels right. But do SOMETHING. The NICU is a hard place to spend time – do what you can to make a few minutes a little brighter. You’ll be glad you did.
Did I forget something? Let me know!!!
This is an AMAZING post! So many people have no clue what to say or do when such a happy occassion becomes terrifying. You’ve given such concrete, useful tips to say and do that anyone could feel helpful when friends or relatives are in the NICU situation. I’m bookmarking this page in the hope that I never have to use it but thankful that if I do, your words will help to guide me to be the support they need.
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Anna Marie Hinnant says:
Great advice Heather – especially the bit about not saying the baby is going to be fine. I got so tired of hearing people tell me Thomas was going to be fine when no one on the PICU staff could tell me whether he was going to live or not. And I can’t tell you how many meals I ate standing up in the hallway outside the PICU because people were kind enough to bring food. Hospital cafeteria food is bad under the best of circumstances!
Great advice. I lived hundreds of miles away when my friend’s little guy was in the NICU so I just called her and emailed her whenever I could. I didn’t care if she called or emailed back I just wanted her to know I was thinking about her.
Lisas last blog post..My Toddler: Mommy’s Little Helper
I love this! You are right on everything. Oh, one more thing ot add for the dont list: dont ask if you can come see the baby in the hospital.
mayas last blog post..Rock on DJ. Rock on.
I love this! You are right on everything. Oh, one more thing ot add for the dont list: dont ask if you can come see the baby in the hospital. I didnt really want anyone to see the girls until after they were home. I felt like they werent a side show. If the mom offers then go, but if she doesnt- dont ask.
mayas last blog post..Rock on DJ. Rock on.
This is a great post. You really hit the nail on the head.
When our daughter was born premature, we weren’t expecting it and so really weren’t prepared. One of the things that meant the most to me was a friend of mine who went out and scoured the city for beautiful preemie sleepers and outfits we could dress our new baby in. That simple act of dressing her in clothes just brought a little sense of normality to the whole situation. The other gift I really appreciated was books. There was a lot of down time where you’re just sitting around, but too stressed to sleep, so a book was nice to escape into for a bit.
DesignHER Momma says:
this is absolutely fantastic advice. I’m gonna stumble for ya….more people need to be aware on how to help.
DesignHER Mommas last blog post..All I got was a toothbrush
I commented on your blog when you first started writing and have been reading ever since! My son was a Westwood preemie, too. In fact he and I talk about his NICU stay sometimes (he’s seen some of the less scary photos of himself in the NICU). He knows Maddie was in the “hoppable” like he was and he has a big crush on her!! He always wants to see the videos and photos you post.
This post was a great NICU primer–the only thing I would add is that friends/family can help to update everyone so that the parents aren’t fielding tons of calls and emails. When Liam was in the NICU my mom sent out “status reports” so that we didn’t have to. It was really helpful.
Thanks for writing this!!
What a great list!!! That’s awesome!!
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Backpacking Dad says:
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ms. changes pants while driving says:
gah. you got me all choked up with the list. sorry for not getting you a baby gift card. it’s in the mail
great list. i hope there comes a time when we don’t have to use it.
ms. changes pants while drivings last blog post..i love babies
Heather…that was totally awesome! It is so helpful having you be so frank about what types of things are just plain annoying when you are dealing with a situation like yours! Good luck with your March of Dimes Mommyness!!
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Keary Naughton says:
What a great post of advice- I read your blog all the time and truly enjoy it. We have much in common. My sister lives in LA- she went to USC and never came home. Goes to all the football games and takes my nephew who is 2 to them. sent her a link to the picture of Maddie in all the USC gear. She got laid off from her job in November and is looking for another one. I understand what it is like to be in the hospital for an extended period of time pregnant and not knowing what will happen- both a bad outcome and two good outcomes. Many people don’t know what to say so they don’t say anything. Right now my son is 18 and at college and my daughter is 15 and in High School. Things do work out.
Amy Halleran @BeyondJEMS says:
I just caught up with your blog this past wk. I so related to where you were with Maddie. I went into labor at 20 wks, they held me off to 27. E&J were born weighing less than 2 lbs each. 2.5 months in the NICU was quite an experience. One of the things I did was find a local massage therapist who did house calls & she came to the hospital & the nurses set me up in an empty room to enjoy the hour. And great call on the not eating. I ate but it was junk and I put on 20 pounds in the 2.5 months, ended up heavier than when I delivered. So great healthy tasty meals are awesome. A couple of my friends did the new moms packages from an online delivery place – full meals w/ appetizers, desserts, all the fixings. They are frozen and you just pop them in the microwave. Very healthy. Thanks for sharing this. It’s a great post on how to support your friends. Hope Maddie has a good session with the feeding specialist! Amy
Amy Halleran @BeyondJEMSs last blog post..Ultimate Blog Party 2009 – Let Me Introduce Myself
Great! We lived 3 hours away from the NICU and had 2 older children at home and one of the best things that was offered to us was a family member sitting with him when we couldn’t be there. She read stories to him and even had us do a tape with all of us talking to play to him. It meant so much.
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Thanks so much for this list! Such great insight for all of us!
Great list! This should be handed out like cigars when a birth is announced because alot of this can be said about a new non -NICU baby as well.
To add to the volunteer list, offer to babysit older siblings. That was my daughters problem having a toddler at home and yearning to be at the NICU as long as possible.
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Awesome post. I wasn’t in there for long but I can see all of those being important. I’m donating a bunch of the teeny clothes I had for Amelia/Alex to my NICU. I remember just how nice it was to see my baby–even hooked up to the gazillion monitors–in something NORMAL. Because the NICU is not NORMAL.
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this list is great! I think this list is also applicable in general to parents of preemies. My little guy was a preemie and while we were able to go home almost right away, he required daily nurse visits for his first ten days and we had to wake him to eat every 2.5 hours for his first two months.
The one thing I would add is for people to understand they might not get a thank you card for a LOOOONG time. Friends/family who are helping out at home with pets, older kids, whatever can also help out by sending a quick email or a call to someone who has sent a gift so they don’t ride your a$$ over it.
Great post, Heather! A lot that people don’t even think of!
This was an awesome post…My little sister’s best friend (who is like a lil sis to me too) has a son who is in the NICU and she got bad news yesterday. Her son was actually born full term but she almost delivered multiple times before that. He came out with the cord tight around his arm and developed a major rash. The tests came back clean except for jaundice which wasn’t too bad. He is so tired, too tired to eat so they put in a feeding tube to help. They thought it was the jaundice making him so tired. Well yesterday they did and MRI and found out that he has major swelling in his brain and a small bleed. They are doing a test today to see what his quality of life will be: some learning disabilities or severely handicapped. Please keep baby Kaden and his family in your prayers. I’ve called her a few times, texted, and e-mailed but I haven’t known what else I could do for her, for them and this really helped so thank you.
This is a GREAT post! I am going to bookmark it in my reader and the next time I have a friend in this situation, I will refer back to it. Such practical advice – many of which I would never have thought of. Love the idea of taking things in for the nurses too.
Thanks for sharing this!
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You’ve totally been reading my mind haven’t you? I was half way through writing something like this for my blog! lol
One thing, If you don’t know what to do ASK. Be specific. We’ve all gotten the “If there’s anything I can do…” but never asked even when we did need something.
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Great post/advice. Thanks for the information!
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This list is excellent. And SOoooooooo needed. I wish my friends had been able to read it while my son was in the NICU.
Yeah, isn’t that last point SO true?
I love this. Love, love, love it. This should be printed and posted on the wall of every hospital.
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You and your family have made and will continue to make an amazing mark on the world.
I wish the people in our life had read the list before they came to see us or contacted us when our son was in the hospital. He had to have two surgeries and spent over a 100 days in the NICU. I actually had a co worker ask how we were going to afford to keep him in the hospital or pay the hospital bill. We also had people just randomly show up at the hospital and I sent them away. My addition to the list would be call the parents before you visit. They may need some time to themselves and will let you know when they are ready for visitors.
I just don’t think people know what to think or say when presented with the situation.
I live in Utah and just returned home with my twins from the NICU yesterday. What a journey! During the second week, which was particularly difficult, I received a bag in memory of Maddie. It had everything you listed in the NICU parent kit and then some. They even made treats for the nurses and brought lots of magazines that helped pass the time. There was a card with Maddie’s picture on it and I wondered about this beautiful little girl. I read through your blog today. My heart aches for your loss. Maddie’s life and your struggles have inspired many people and it made such a difference for me. Every time I realized I had forgotten something, I looked in the bag and there it was..a disposable camera, lotion, my toothbrush..little things that made such a difference. I won’t forget it. Thank you.
Damians Mom says:
Wow, this is great! I wish i had this when my son was in the hospital. He was there for 3 months and it seemed like all anyone every said or asked was the stuff that you listed as stuff not to say or ask. This would have helped. I was always hearing oh hes going to be fine this person had a preemie and hes doing great now. But every baby is different and has different things to deal with. How did they know he was going to be ok??!! We were also asked about every day “do you know when hes coming home yet?” or “When can we see him?”
I just wanted to let you know that this post is a lot of what inspired me to create Survival Mode Parent, an organization designed to help parents with kids in the NICU or PICU with their basic needs. You can find us at http://www.survivalmodeparent.org. I reference this post often. Thank you so much for it!!
.-= Mandy´s last blog ..Welcome to Survival Mode Parent! =-.
Michele Pulaski says:
This is just a wonderful, wonderful list. Thinking back to how my beautiful baby girl almost died and how out of our minds her father and I were with fear, grief, and the exhaustion which all came with camping out at the hospital, you put in writing what I know to be true and what should be passed along as “must have” information to as many as possible. THANK you!
.-= Michele Pulaski´s last blog ..Help Fight For Healthy Babies =-.