Perspectives: 10 Parents Share Their Advice for Coping With a NICU Stay

Being in the NICU—the neonatal intensive care unit of a hospital—can be a frightening thing for parents. Seeing a tiny baby hooked up to all those monitors is not something you can ever be emotionally prepared for. Thinking about things like how long the stay will be, whether or not they are being fed, what the diagnosis is, and more can overwhelm parents.

Below, moms who have encountered the NICU share their children's diagnoses, their tips for handling it emotionally, and what others can do to support a NICU family.

Jackie Rosen

Why Was Your Baby Admitted to the NICU?

She had transient tachypnea of the newborn, a condition that often occurs with C-sections. She was born by scheduled C-section three weeks early, all due to my numerous disabilities which led to my inability to physically handle the pregnancy anymore.

However, because I was a NICU baby myself and came close to death on numerous occasions due to a congenital heart defect, I emotionally projected onto my own child what had happened to me.

What's Your Top Tip for Emotionally Handling the NICU? 

Try not to jump to the worst-case scenario or catastrophize, as I did. Don't compare your baby to other NICU babies because your baby's journey is their own. Seek out resources in the form of CBT (cognitive behavioral therapy) or talk therapy.

Also very important: do not blame yourself for whatever medical conditions your child may be dealing with. I, unfortunately, blamed myself for asking for an early C-section and thought if I could have only held on longer, she wouldn't be in NICU. However, I did the best I could considering how many disabilities I have and how difficult my pregnancy was, and otherwise, our daughter was perfectly healthy. 

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

Ask parents of all genders how they are feeling and if they want to vent. Offer to support them in any way you can, as the baby is receiving all the care they need and at this point it's the parents who require support. Be sensitive to emotions and recognize that parents may not want to hear their child compared to someone else's. 

Margaret Ash

Why Was Your Baby Admitted to the NICU?

I was diagnosed with an incompetent cervix towards the end of my pregnancy. During a weekly visit with my OBGYN, I had a massive contraction. They were able to stop the contractions, and I was on bed rest in the hospital for a week before giving birth at 33 weeks.

What's Your Top Tip for Emotionally Handling the NICU? 

My adrenaline kicked in and I became hyper-focused and was an Alpha Mom. My body started producing more milk than my baby needed, and I was so focused on his stats that I wasn’t sleeping or taking time for myself.

The hospital allowed NICU parents to stay in unused maternity wards for the duration of their child's NICU stay. While it was convenient for pumping and taking milk to the NICU in the middle of the night, living in a hospital alone is very hard. There are no nurses to check on you, the parent. Every waking hour, you are in the NICU, and when you need to rest, you are trying to do so in a vacant hospital room all alone ordering delivery food from the cafeteria.

None of the other NICU moms spoke in the pumping room, nor in the main NICU room. I would try to engage, but everyone was so stunned and disengaged. I think we also wanted to avoid comparing our stories to each other while we were all “in the thick of it.”

If I could go back in time, I wish I had forced the conversation and made friends with the other moms, regardless of how tired, insecure, and emotionally unavailable we all were. The fear of the unknown outcome of your child is devastating, and the personal anguish of being alone only compounds the fear. 

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

It is lonely. You are sitting there by an isolette all day long while the baby sleeps and is hooked up to so many monitors. My NICU stay was before podcasts were a big thing. You can’t talk on your phone while in the room, but getting texts or pictures from people was very uplifting.

The best thing you can do to support a family in the NICU is to call and text them, even if it is to talk about the weather. Anything to get their mind off their reality. Send hand-drawn pictures that can go on the isolette and then find their way in a baby book one day. Send preemie clothing; offer to send meals when they return from the hospital. Or bring them meals at the NICU and sit with them. Force them to sit outside and take a break from the dark, loud NICU room. 

Melissa Limberg Rogers

Why Was Your Baby Admitted to the NICU?

When my baby was born, they immediately noticed low blood sugar. After continuous checks, it wouldn’t stabilize. Though I planned to breastfeed, they told me we needed to give her formula right away to raise her blood sugar. That didn’t work, so she was admitted to the NICU.

What's Your Top Tip for Emotionally Handling the NICU? 

Know that they truly have round-the-clock care and even though you want them to be with you every single moment—newborns just want to sleep anyway! I looked at it as she had a quiet place to sleep while being constantly monitored.

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

Send food! Text, too. It’s so lonely and everyone assumes you’re dead to your phone when really you’re begging for someone to talk to.

Elizabeth Constantine

Why Was Your Baby Admitted to the NICU?

He was admitted to the NICU after being born at exactly 34 weeks. I went to my 34-week appointment to learn that my blood pressure had skyrocketed.  Following some blood work, I was diagnosed with HELLP (Hemolysis, Elevated Liver enzymes, and Low Platelets) syndrome and told that I had to have him immediately. His main issue in the NICU was premature lung development. 

Because he was born early, when he was breathing, his lungs were sticking together and causing him to work too hard to breathe.  He was placed on a vent for a few days and then moved to a CPAP machine, then nasal cannula, then to breathing on his own.

What's Your Top Tip for Emotionally Handling the NICU? 

Only focus on what is in front of you. I felt myself start to panic when I thought about what could happen or what the future could look like. I did much better when I celebrated each small milestone, as opposed to worrying about the big ones. 

It is very easy to get overwhelmed, and I felt like I was thrown into a world of terminology, decisions, and people I knew nothing about. I would also say take care of yourself! I almost had to be reminded that I too was recovering and that I needed to be just as mindful about my own recovery.

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

I had a tremendous support system, and they made all the difference in the world. The NICU can be a very lonely place, and there were many days when I wasn't even allowed to hold my baby, so I felt helpless. I would tell people that it was the weirdest feeling to have had a baby, but to feel like I wasn't taking care of him. 

It meant so much to me to have people like my parents, sisters, and close friends just come and sit with me. It also helped for them to handle essentially everything else, so I could focus on the baby and me. They cooked meals, took care of my older child, communicated with everyone asking about us, cleaned my house, brought me everything I needed, etc.  

I also had a fellow NICU mom put together a NICU survival kit that was a cute bag filled with things to read, hand sanitizer, small snacks, breath mints, etc. I thought this was such a thoughtful idea. The one thing I will never forget though was one late night in the NICU one of the nurses gave me a bag with a small gift (I can't even remember what it was) and a note from another mom who had a NICU baby. It was a simple note of encouragement and included a picture of her then 3-year-old running around. It still brings tears to my eyes thinking about how much that meant to me and it was from a total stranger.

Rachel Weingartner

Why Was Your Baby Admitted to the NICU?

With my oldest, I had preeclampsia. My blood pressure starting rising around 27 weeks, and I was put on bed rest until I had him at 32 weeks. I had an emergency C-section with him, and he was 4 pounds and 2 ounces when he was born. 

With my middle, I had him at 37 weeks when my blood pressure started going up. He was totally fine in terms of size but had trouble keeping his glucose levels stable. They kept him in the NICU until he was able to regulate it on his own. With my youngest, I had him at 35 weeks when my blood pressure started going up. They took him to the NICU for a few days. 

What's Your Top Tip for Emotionally Handling the NICU? 

We kept reminding ourselves that the babies are in the best possible hands when they are in the NICU. During our longer stays, my husband would go to work during the day, and I would stay in the NICU with the baby most of the day. He would come to visit us during his lunch breaks.

I did go home at night to get quality rest while our babies were in the NICU, which was emotionally difficult. However, everyone told me that I should get sleep then so I was well-rested and recovered from the C-section when the baby came home. It was good advice, even though it was really hard to leave. 

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

When we had siblings at home with a NICU baby, it was incredibly helpful to have our bigger boys fully covered with childcare. That was one of the most challenging aspects of a NICU stay—taking care of siblings. I think offering to help watch a family’s siblings is such a gift.

Additionally, bringing meals to parents in the hospital is really helpful and also buying premie clothes as gifts. If the baby is born early and small, the parents often do not have the right sizes for them. 

Jenny Reyes-McCormick

Why Was Your Baby Admitted to the NICU?

At 26 weeks gestation, at a routine checkup, my nurse practitioner could not locate my son’s heartbeat. I was immediately placed in an ambulance and rushed to the nearest hospital where I was immediately prepped for an emergency cesarean.

To date, my medical team couldn’t figure out why my son was experiencing bradycardia in utero, but if they hadn’t delivered him and had I not had an appointment with my nurse practitioner that day, chances are my son wouldn’t be alive today.

What's Your Top Tip for Emotionally Handling the NICU? 

The best tip I received from a preemie and loss dad was, “Stay in the moment.” Try not to think too far ahead about the "what-ifs "and "maybes." Take it one day at a time, one moment at a time, and one breath at a time. Remember that in the moment, your baby is still present. Talk to him, tell him how much he is loved, tell him to fight and that you are there every step of the way, and above all, hold onto hope.  Hope gives us the courage to keep advocating for our preemies. 

My second tip is to give yourself grace.  Whatever feelings you have are okay.  Be angry, be sad...you are entitled to grieve, hope, and feel whatever feeling hits you. Your emotional health is an important factor in traveling the NICU journey. Allow yourself to feel, regroup, walk away for a bit, and try, try again.

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

Sometimes the most well-intentioned words can sting. Preemie mothers can feel vulnerable and rightly so. Sometimes the best thing to say is nothing at all. Sometimes a silent presence offers the best form of comfort. 

Also, the NICU journey can last days and even months and the NICU journey can be isolating and incredibly lonely—check in! Remember to check in with the preemie mom and dad. Sometimes just a quick “I’m thinking about you” text can make all the difference.

Aubrey Carroll

Why Was Your Baby Admitted to the NICU?

My water broke at 26 weeks. I was in the hospital being monitored until I started having active contractions and he was delivered via C-section (because he was breach). 

What's Your Top Tip for Emotionally Handling the NICU? 

Being there for morning rounds allowed me to hear his progress from the doctor and ask specific questions. I pushed on everything. You have to advocate for your child because they cannot do it themselves. This made me feel like I had some control in a very difficult situation. 

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

Offer to visit with them. Take them a meal. These parents feel conflicted, they hate being at the hospital but feel guilty when they are not there. It’s nice not to have to worry about cooking dinner when you get home after a long day. 

Deb Discenza

Why Was Your Baby Admitted to the NICU?

My daughter was born 10 weeks early at 30 weeks gestation. In addition to being 2 lbs 15.5 oz at birth, she had respiratory distress syndrome, and due to her prematurity, her organs and development were severely delayed. She needed time in the incubator on respiratory support, a feeding tube for feedings, and medications to help with her various conditions (heart, lungs).  

What's Your Top Tip for Emotionally Handling the NICU? 

Focus on the moment, not the long term, and make sure to take breaks for yourself.  

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

It's okay to not know what to say and to say exactly that. But to follow up with the fact that you are present and here to help in whatever way possible either at the NICU or outside of the NICU. Offer to be a "team captain" that can coordinate an army of people to help out with meal deliveries, home chores, childcare, errands. Using sites like Lotsa Helping Hands will make you look like a heaven-sent rock star to the family. 

And while you are at it, refer to them to support groups and organizations that can be of great help in a time like this, such as the Alliance for Black NICU Families, GLO Preemies, and PreemieWorld, as well as the NICU Parent Network. 

Ashley Randolph

Why Was Your Baby Admitted to the NICU?

I suffered from extremely severe hyperemesis gravidarum during my pregnancies. It was not proven that it led to my NICU stays, but it is not certain [that it didn't]. Also, because of my severe sickness, I also never had a consistent doctor from the beginning to the end of my pregnancies.

What's Your Top Tip for Emotionally Handling the NICU? 

I was open with my feelings to the social workers and my closest friends. They became my go-to team.

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

Take it one day at a time. You have no control of the situation, but you have control of the moment you have right now with your baby. Read to your baby, talk to your baby, and enjoy the precious gift you created.

Molly Jean Childs

Why Was Your Baby Admitted to the NICU?

My child was born five weeks and six days early after I had a placental abruption. She was taken to the NICU for breathing issues, low APGAR (a score which shows how well the baby tolerated birth), and to be evaluated (initially). She remained in the NICU because of underdeveloped lungs, hypercalcemia, bilirubin elevation, grade 2 germinal matrix brain bleed, an atrial septal defect (ASD), and ventricular septal defect (VSD)—both of which are holes in her heart—and had feeding help like a nasogastric tube.

What's Your Top Tip for Emotionally Handling the NICU? 

Take every single team, sentence, minute, and second individually. Focus on facts. I felt constantly like the goal post was being moved farther away; it felt like whiplash. Write things down because you will forget and get mixed up. Wear headphones sometimes to take breaks from the beeping. Don’t be afraid to ask to hold your baby (they may say no, but keep asking), ask the nurses to show you everything they are doing, ask questions, take breaks, [and] take a walk. 

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

Please don’t inundate them with texts, calls, emails. Stick to maybe one message and then don’t be offended if they don’t answer. Send DoorDash/GrubHub gift cards. Offer to drop off books, special meals, or a sweater at the door to the hospital, but don’t expect anyone to stick around to talk. If a grandparent or other person has other children, please contact that person to offer food, help, or even a play date.  

Ryane Granados

Why Was Your Baby Admitted to the NICU?

After being admitted at 35 weeks for premature labor, I spent 14 days in triage on bed rest experiencing what was described as tetanic contractions. Eventually, my son's heart rate dropped and at 37 weeks he was delivered by emergency C-section. He was admitted to the NICU because of low birth weight and monitoring for any distress. 

What's Your Top Tip for Emotionally Handling the NICU? 

Celebrate every milestone big or small, even while in the NICU. When they come off a medication, play your favorite song. When those bilirubin levels hit normal range, dance next to your baby's isolette. Years later you will find that motherhood is improvisational acting on a world stage, and it is simultaneously heart-wrenching and heart-mending. With every celebration of the odds your baby has defied, hearts continue to mend. 

What's One Piece of Advice You Would Give Others Who Want to Support Someone Who Is Going Through a NICU Stay?

My best advice to those looking to offer support would be to avoid giving unsolicited advice or drawing comparisons to their own parenting journeys. Instead, what a NICU mom needs is an acknowledgment that what is happening is hard, but with your help, they can do hard things. Help can be making Target runs, finding preemie-size clothing, or sneaking in their favorite coffee drink. In short, be of service to a mom endeavoring to do hard things.