Items You Need for a Long-Term NICU Stay

If you know your baby is going to end up in the NICU, you might be trying to prepare ahead of time. Maybe you already have a NICU baby and you’re trying to improve the situation. The NICU is a tough and demanding place (not to mention the NICU during the age of COVID-19); NICU mamas need all the help we can get!

I wrote a similar post to this one a few weeks back, based on my own experience with the NICU: 10 Items You Need for a Short-Term NICU Stay. That’s a helpful post, but it will only go so far since my experience was limited, my baby wasn’t a preemie, and I got to stay at the hospital until she was discharged—plus, it was well before the pandemic.

Related reading: My NICU Story

So I talked with Emily, a NICU mom who had to have her baby at 29 weeks due to severe preeclampsia. Harper was born weighing 2 pounds, 1 ounce, and spent 86 days in the NICU.

The first few months of a preemie mom’s life are unbelievably challenging, but for Emily and so many NICU mamas in 2020, everything was compounded by the coronavirus pandemic. Harper was only allowed one parent at a time, so the day she was born was the last time Emily, her husband, and their baby were together until she went home on day 86.

Emily and her husband’s first photo as a family of three was also their last family photo until Harper was discharged on day 86, due to COVID restrictions.

For the first few weeks, Emily couldn’t eat or drink while she visited her daughter, and leaving to use the restroom was a huge hassle. She had to wear a long, nauseatingly hot gown, gloves, and a mask. She didn’t get to do skin-to-skin until day 45 when the hospital finally lifted some COVID restrictions.

Emily didn’t even get to hold her daughter until she was 6 days old.

Through it all, Emily’s faith in God, trust in the doctors and nurses, and overwhelming support of family and friends gave her strength, and now that she’s home enjoying Harper with endless freedom, she’s sharing her perspective so we can help other moms just beginning their NICU journey.

2 NICU Phases, 2 Sets of Needs

I asked Emily what her top items were for getting through the long-term NICU experience. She told me the needs differed throughout her journey depending on which stage of NICU Harper was in at the time.

Harper was first admitted to the critical-care section of the hospital’s level 3 NICU, one that can care for babies born as early as 28 weeks gestation, where she lived in a temperature-controlled isolette. After 49 days, she was moved to the noncritical-care section, the one for “feeders and growers.” Within a few days, a private room became available, where Emily could room in with her daughter until she graduated.

Phase 1: The Critical Care Unit

This phase was, by far, the most difficult part of Emily’s NICU experience, in large part due to the pandemic. She was only allowed to hold her daughter once a day, so she would spend 10-14 hours per day sitting or sleeping in a chair beside Harper’s isolette.

#1: Cloth Hearts

Left: Harper’s cloth heart nestled behind her head. Right: My daughter Lydia’s cloth heart.

Emily’s NICU provided her with two small cloth hearts—one that stayed with Harper, and one that Emily would tuck under her bra strap. Every day that Emily visited, she’d switch them out. It was a small way that Emily could provide Harper with the comforting scent of her mama, especially during all those long hours she had to spend in her isolette.

#2: Books

Books gave Emily another way of doing something for Harper when there wasn’t a whole lot else she could do. The doctors also stressed the importance of reading to Harper. Emily would bring a handful of books in varying lengths and read them aloud to her daughter throughout the visit, even making her way through lengthier chapter books. It was a wonderful way to stimulate language development, let Harper hear her mother’s voice, and pass the time.

#3: Personal Blanket to Cover Isolette

Every baby in the critical-care NICU had a hospital-issued blanket to cover their isolette to protect them from overstimulation and bright lights. Since Emily felt like she had so little control over anything for her baby, she brought in a beautiful pink floral blanket to replace the faded hospital blanket. She could spot her daughter’s isolette from across the room when she visited, and Harper become known for the pretty blanket among the staff.

Harper and her signature isolette blanket

#4: Receiving Blankets for Crib Sheets

Similar to the blanket that covered the isolette, the hospital allowed Emily to switch out their traditional receiving blankets they use as sheets. It was a small thing, but every little act a NICU mama can do for her child is a big deal when there isn’t much else she’s able to do.

Harper sleeping on a lovely ballerina receiving blanket her mother brought for her

#5: Personal Baby Clothes (When Baby Is Big Enough)

Harper couldn’t wear clothes until she weighed at least 3 pounds, more than a month into her stay. The hospital provided clothing after that, but Emily brought in her own preemie outfits. Choosing Harper’s clothing was another small thing that she could have some agency over.

#6: List of Questions

Any NICU parent understands that when you leave the NICU, you don’t totally leave the NICU. Emily had so many questions for the medical team that would pop into her head in the middle of the night or right after she’d gone home for the day. She started writing them down and keeping a running list that she’d bring in every time she visited. The next day, when the doctors did rounds, she’d get all her questions answered and wouldn’t forget anything.

#7: Non-Electronic Activities to Do With Your Hands

Emily’s critical-care NICU doesn’t allow parents to bring laptops or tablets, and due to COVID restrictions, cell phones had to be in plastic bags at all times, making them difficult to use. Emily found herself with a lot of time on her hands. When she wasn’t holding Harper for a little while once a day or reading books to her, she’d use the time to catch up on thank you cards for people who’d sent them books and gifts or stopped in at the drive-by baby shower they’d had after Harper was born. It distracted her enough to keep her grounded and made her feel productive, something she desperately needed to feel.

#8: Journal and Pen

Emily had had a life-threatening birth experience and then faced the prospect of enduring a seemingly endless stay in the NICU. On top of that emotional baggage, Emily and her husband quickly found themselves fearing for Harper’s life as she developed necrotizing enterocolitis, which kills up to 50% of babies who contract it in the NICU. Thankfully, Harper survived, but Emily was only beginning the journey of processing all these events. Many days when she visited her baby, she brought a journal and pen with her and never opened it, but it was ready for when she worked up the emotional courage to start writing it all out.

Phase 2: “Feeders and Growers”

Once Harper was no longer considered critical-need, the hospital moved her to the second section of the NICU, where babies’ main goals are growing, gaining weight (aiming to pass that car seat test), and learning to take feeds by mouth. At Emily’s hospital, they had the option for a private room, which allowed for greater flexibility regarding COVID restrictions. Emily could room in with Harper, sleeping on the couch. Because of this new dynamic, she saw her needs change quite a bit.

#1: Sound Machine

Coming from the critical-care NICU section, a somewhat open space full of alarms, beeps, and screaming infants, a private room afforded Emily a chance to take some control over Harper’s surroundings. She brought in a sound machine and had it running all the time, drowning out some of the maddening sounds of the rest of the NICU. The peaceful environment was something Emily wanted to give to her daughter, and it was her only hope of getting decent sleep herself.

#2: Food

Due to COVID restrictions, the hospital didn’t allow Emily to leave once she was there for the day or overnight, even to go to the cafeteria or the Starbucks in the hospital. They provided meals for overnight stays, but there’s only so far that hospital food goes before you’re sick of it. Stocking up on snacks and drinks she brought from home was a huge mental boost for Emily.

#3: Extra Long Phone Charger Cord

Like any hospital room, the limited outlet options were in strange places, where the typical phone charger doesn’t reach all the way to the seating area.

#4: Planner/Calendar/Notebook to Track Progress

Another way for Emily to feel more in control of Harper’s care, a notebook gave her a place to write down feed times and quantities, level of spit up, wet and dirty diapers, what time Harper received medications, and what her temperament was like after. Logging Harper’s care also gave Emily a better sense of the overall picture, which was helpful; the biggest obstacle to Harper going home was being able to take all her feeds by mouth for 48 hours in a row while still gaining weight.

#5: Pillow and Blanket

Emily slept on the couch, and though the hospital actually provided some sheets, blankets, and pillows, bringing her own was not only more comfortable, but helped Emily feel like she had a little bit of home in the room.

The couch bed Emily slept on, made up with Harper’s former isolette blanket, a bright splash of home and comfort

#6: Fan

Emily’s room was hot. A fan was the only way she got any relief, especially for sleeping at night.

#7: Portable Workout Equipment

Self-care is hard to accomplish in the NICU! Emily managed to do it in her four square feet of space in the private room with resistance bands and workouts she found on Pinterest. She says this was vital to keeping her sane. Spending 20-22 hours a day at the NICU with Harper and only going home to change clothes, eat some food, and wait for her husband to visit their daughter for his one visit per day, there was no time at home to squeeze in a workout. So she’d use her resistance bands and worked out every night between Harper’s 9:00 P.M. and 12:00 A.M. feeds.

The tiny space where Emily accomplished workouts with resistance bands

#8: Laptop

Unlike the critical care section of the NICU, parents were allowed to bring electronic devices to the “feeders and growers” section. This was a very good thing for Emily because—since Harper was in the NICU for 86 days—she’d used up all her maternity leave before her baby even got to come home from the hospital. Work being a necessary thing to accomplish, it gave her something to focus on besides her daughter and the NICU and “gave me a reason to get it together some days when I just wanted to fall apart.”

It’s not quite over when your NICU baby is discharged

After 86 days, Harper finally got to go home!

Harper on graduation day
Harper leaving the hospital where she’d spent the first 3 or so months of her life

It was a monumental occasion, but one that marked the start of a new frontier: raising a very small child at home in a pandemic. Harper left the hospital not only with an eye condition called retinopathy of prematurity, but also chronic lung disease—damage caused by all the use of the life-saving breathing equipment Harper needed. While Harper was eventually pronounced retinopathy-free, there still lingers the delicate challenge of balancing a lung issue during COVID.

Beyond Harper’s lingering health issues, Emily now faces what so many parents face: being one of two working parents with a child at home during the pandemic.

COVID puts greater strain on the already difficult transition of bringing a new baby home and figuring out how to care for it constantly. But NICU parents deal with yet another component: working through the emotional baggage of having had a NICU baby. From practical challenges (“How do I know my baby is okay without the monitors?”) to mental and emotional grief (“How do I let go of all the things I missed out on?”), the NICU journey doesn’t truly end until a NICU mama navigates the aftermath.

Though I can’t speak to this on a long-term level, I can speak to it to some degree. For more on processing the NICU experience, check out this post: How to Get Past the NICU and Enjoy Real Life.

It’s the little things that make it better

Being a NICU mama is a challenge no matter what. That’s why these little comforts can mean so much to us. I hope this list helps you navigate your NICU stay a little more easily!

A huge thank you to Emily for sharing her experience with us!


You might also like these posts:

My Postpartum Depression Story

Reframing Mom Guilt | It’s Okay to “Fail”

A Mom Mantra for the Bad Days

Reading With Baby | 10 Refreshing Tips!

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