This article was originally published as a Facebook post on June 27, 2019 by NICU parent and WHA patient Joyell Hardy. Her twins are now healthy 21-month-old babies. Thank you to Joyell for sharing her experience and suggestions. Read more about her emotional journey in her second article: NICU life part 2: GRIEF. Photo credit: Ericka Westmoreland.
I have twins born at 28 weeks and 1 day gestation, so three months early. Baby A was 1210 grams (2lb 10.7oz) and was in the NICU for 52 days. Baby B was 1120 grams (2lb 6.4oz) and was in the NICU for 68 days. My perspective is from the point of view of a preemie mom. Not all of my suggestions will apply to every NICU baby.
Many people want so badly to help! Aside from prayers and checking in, there are some physical things you can get for these families. Here are some ideas:
Lotion: Unscented lotion or hand cream. There is a LOT of hand washing that happens and hands get dry. Please only get unscented and high quality. The littlest patients need as little stimulation as possible regarding scent. Other ideas would include unscented body wash or soap. A care package was left for me in the NICU with some lotion and it was lovely.
Pajama tops for mom. Get a super soft pair of button up pajama tops for mom! Skin to skin (Kangaroo) is super important for babies. Moms are a bit more exposed than dads in this regard. Soft button up pajama tops let mama stay pretty well covered and gives the ability to immediately button up afterward. We were in a shared pod for the first few weeks. I lived in the jammies gifted to me for about two months, but especially those first few weeks.
Hypoallergenic and fragrance free laundry soap and dryer sheets. Again, scent can be too much for little littles. My sweet cousin ordered a bunch of soaps and dryer sheets on Amazon and had them delivered straight to my door. It was such a blessing not to have to go to the store for those things or to have to research!
Slippers. Buy mom (and dad if he’s there a lot) a pair of slippers. Hospitals are not home. You’ll want something on you feet. And a cozy pair that you can chuck in the garbage on discharge day is perfect!
Lovies. Some hospitals provide them. Some don’t. Some will have them super close to the babies and some make you keep them at the foot of a bed/crib/isolette. A lovey is basically anything fabric and small, often a little doll or animal. Mom (and dad, but mainly mom) will put a clean lovey down her shirt for a minimum of four hours. You then leave them with baby(ies) when you are gone. The smell of you will comfort them! Smell is a powerful thing. Get more than one. You will want to have a few so that you can regularly wash them when they inevitably get dirty or lose their scent. Remember to wash in fragrance free soap.
Books: I had a few Nancy Tillman books that I read to mine regularly. My favorites are You’re Here For a Reason and I’d Know You Anywhere My Love. I read those two books over and over. They remain favorites. Any book or books will do. I preferred only to have a few on hand. The repetition helped me.
Jammies for baby(ies). You can’t usually dress a NICU baby right away. If they’re on a ventilator or CPAP or under bili lights etc, you’ll have to wait to dress them. When you do, get snap up jammies with no feet! Having clothes that DO NOT go over the head are much easier. Having only snaps and not zippers allows for all the cords and whatnot to escape back to their monitors. Having no feet allows the pulse ox to have a little more room. You can use onesies or footie jammies. But snap up, footless are the easiest.
Swaddles. This is pretty much a preemie only one. They are so little that regular swaddle blankets are WAY too big. Make little ones or get some from somewhere like Etsy. Get a few so they can be washed! Again, swaddling has to wait for respiratory gear to step down below CPAP level. But it was lovely to have special preemie swaddles.
Photography. If you are a photographer, give the gift of photography! My big regret was only having someone take pictures once, early on. I wish I’d had a professional photographer.
Frozen convenience meals or premade individual lunches. I liked Evol Bowls (freezer section). I could throw one in a lunch bag with an ice pack then slip away for just a few minutes to warm it up then get back to babies. Any meals would be helpful! But the quicker it is to thrown it in a bag and get out the door, the better!
Gas gift cards. Mom is going to do a lot of driving if she’s not rooming in.
Restaurant gift cards to places nearby the hospital (from a friend and fellow preemie mom). Send a gift card to a restaurant near the hospital. It lets mom and dad go have a “date” and still be close to baby. “It wasn’t fast food but an actual sit down restaurant. Lovely!”
Neck pillows. Get a good quality inflatable or stuffed neck pillow for the parents. Please get ones that can be washed. Everything gets sanitized all the time in the NICU. If it falls on the floor, it needs to be washed. So get something that will stand up to that.
Things for mom to remember:
IT IS NOT YOUR FAULT, mama. Your body did not fail you. You did not fail your baby. You are showing up and loving that baby. You are singing and reading and talking to that baby. You are holding your baby (if allowed) or giving hand hugs or holding their hand. You are crying and loving and trying your best to give your all. It is not your fault and you are doing your best.
It’s ok to go home to sleep and shower. Rooming in is not always an option. It wasn’t for me as we have dogs. And in the first three to four weeks, there wasn’t a place for me TO lay down to sleep. It is hard walking out of those doors. YOU ARE NOT ABANDONING YOUR BABY! You are taking care of basic human needs for yourself so that you can go and take care of that baby again. Your sleep is not going to be good anyway, even in your own bed. You’ll wake in the night to pump or cry or call the NICU. That’s ok. It’s still ok for you to sleep at home. They ARE being cared for and tended to. It’s not by you, who will always be best suited for the job. But they ARE going to be ok in the capable and (almost always) loving hands they are in.
Mama, speak up. Tell the care team that you don’t understand what is happening and have them explain it 29 times until you understand.
Tell them if YOU want to be the one to put diapers on or take temps. Some moms prefer nurses to do it. Nurses have the best intentions for your babies. I promise. Sometimes it’s just habit for them to kinda take over. It’s not because they don’t think you are doing a good job or can do it better. It’s literally their job! But another part of their job is to support and educate parents. So if there’s something you want to do, learn how. Make it clear if YOU want to give the first bath or dress baby for the first time or change as many poops as possible. The nurses have to document everything, so don’t be surprised if they pop over to see how big a poop and what consistency. It’s not that they are judging your skills, they just have to document it. Speak up. Ask to have care conferences or rounds in your presence. They want to empower parents and we need to do our part to show them how to do that with us as individuals.
If something is happening with [your baby’s] care that you aren’t comfortable with, speak up. You WON’T and frankly shouldn’t get to make all of the decisions. But you DO get to speak up about care plans. Make sure you’re comfortable. Make sure you understand.
Friends and family, DO NOT EVER SAY ANYTHING RESEMBLING: “at least you have babysitters so you can go home to get some rest.” I will punch you in the throat. All that mama wants is to have a healthy baby home keeping her up all night. It’s not balm to our souls to have someone else taking care of our babies just so we can get some sleep. It does not help.
DO SAY: “We’re thinking of you. We love you. We’re praying for you and the care team. We want to help, can we XYZ?” Give something specific: “I’d like to provide some meals. What are your favorite snacks and meals?” or “I’m sending you an Amazon care package. What are some of the things you need? Ok, I’ll be sending XYZ.”
DO NOT SAY: “Everything happens for a reason.” It may be true, but now is not the time.
DO NOT invite yourself to the hospital. Mom and dad will invite who they want when they are emotionally able. Don’t take it personally.
DO check in regularly but don’t be offended or stop if you get no response. A good friend of mine texted or called daily and I didn’t respond for weeks. It meant EVERYTHING that she kept going and checking even with utter silence from me. Mom and dad aren’t mad at you, we don’t hate you, we don’t think your concern is worthless. It’s just that we are incredibly overwhelmed.
DON’T compare your own story to someone else’s. Saying “I had a baby born XYZ (surgical patient, preemie, unexpected breathing difficulties, jaundice, blood sugar, whatever), so I’m familiar with some of the things you’re seeing and going through. I’m praying for you and am here if you need anything” is one thing and totally ok with me. But saying “My baby was born XYZ so I know what you’re going through” is another reason for a throat punch. Knowing what it’s like to have a NICU baby is always a way to connect with someone and empathize. But their story is their own. It is not better or worse than yours, just very different. In some ways (a lot, actually) having little babies in for months was easier than parents who are in for a few days or a few weeks. Definitely easier in almost every way than having a sick baby. I can say that now. But when someone tried to compare their 36 week baby who was in for 2 days to my brand new 28 weekers I about lost it. Offer love, compassion, a shoulder to cry on, things that helped you etc. But DON’T say you know what they’re going through. You don’t. I’ve had multiple friends with babes in the NICU since mine were born. I try to offer love and support and words of kindness, but I’d never say to someone with a sick baby “I know what you’re going through.” I don’t. I’d never say that to fellow 28 week moms!! Don’t brush it off as nothing, either. It’s easy for me to think to myself “why are they worried about preterm labor, they’re already 34 weeks!” Then I remind myself that that’s still 6 weeks early. That’s still terrifying for that mom. That baby would still likely have to spend a bit of time in the NICU growing and feeding. I’d have been so upset if my 24 weeker friend had brushed things off because mine were born almost 4 weeks later. The bottom line of all of this is DON’T COMPARE.
I’m not sure exactly how to handle this next bit. What do you say to a mom who you know was pregnant and suddenly isn’t anymore with no baby in tow? When you don’t know them well enough to already be in the know? Sometimes we’re lucky enough to get out of the house with someone else watching our littles. Sometimes our miracles are in the NICU when we have to do something like walk the dogs or go to our own postpartum checkups or therapy or the grocery store. And sometimes those precious little babies are the newest angels in heaven. I think a direct, concerned, open approach is what I’d prefer. Don’t ask run-around questions trying to dig info out of someone. Don’t simply congratulate them with no info. I think the best thing would be something like “I know you were pregnant and I haven’t seen you with your baby. I sincerely hope all is well. If it isn’t, I’d love to help in some way. Just know I’m thinking about you and praying for you. If you want to talk about it, let me know.” I like this because if they say, “oh baby is great, just with grandma,” you can congratulate them and celebrate. If they’re in the NICU, mom might want to talk about baby and show pictures, but she might also be mourning. Leave it up to mom to say, “they’re in the NICU and I just don’t feel up to talking about it,” or “they’re in the NICU. I’m just so proud, let me show you 3.7 million pictures!” And if they lost their baby, they can know that crying and walking away or saying what happened is ok. You’re not demanding an answer, just posing your concern and offering help. I’ve never lost a baby (aside from chemical pregnancies). So I can’t say what the best approach is for everyone. But I think that response would probably be pretty good for any situation. Just be mindful that a woman without her baby is liable to cry for any and every reason. Don’t be a mean or insensitive reason for the tears. Be the kind and compassionate reason for them.