September is NICU Awareness Month. This month is a time to raise awareness for the babies who have had a NICU stay, both full-term and premature. No parent wants to experience their newborn having a NICU stay, but it happens to some.
My daughter had a 15-day NICU stay because she was born at 35 weeks due to preeclampsia. All 15 days were awful. I really couldn’t believe that it was happening to me and my little baby was fighting for her life. She was a grower and a feeder in the NICU, so she didn’t have to be on oxygen or have an IV. But, the stay was still tough and something I never want to experience again.
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It doesn’t matter if your baby stayed in the NICU for 1 day or 100 days, each day without your baby with you is hard.
It is a tough experience to navigate. For those with a longer stay, they have to navigate how to go back to work or school. Or if they have other children at home, how to balance them and the new baby in the NICU.
For us, we spent the first 6 days in the hospital 24/7 because I was still a patient myself. On days 7-15, we were at the hospital from 10 am-12 am. We ate every meal there and stayed as late as we could. We spent our days snuggling her if she was having a good day or just watching her grow through the incubator if it was a bad day.
Since she was considered “a grower and a feeder”, our stay involved us attempting to feed her with a bottle as much as she could do and any formula or fortified breastmilk that was left was immediately put down through the NG tube. If you do not know what an NG tube is, it is a tube that goes through the nose, down through the esophagus into the stomach.
We had many people in our lives that checked up on us. My parents Facetimed us every day and our friends brought us meals. All of these things helped us out so much and supported us. But knowing what I know now, the following list is what I wish I either had or would want my friends or family members to know.
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For us, we had support for our physical and emotional needs. But we lacked mental and spiritual support. We were struggling and questioning why this was happening to us. We couldn’t process the trauma that we went through and weren’t given the support we needed through professionals.
10 Things Your Friend Needs You to Know about the NICU
1. My baby is in intensive care.
I have noticed that some people brush off the NICU as “not a big deal”. But it is. Even for babes like my own, who just need there for feeding support and growing, they are under 24/7 watch with nurses, doctors, dieticians, and all the different therapists. The babies are in an intensive care unit. And without that care, they would not be alive. I have to ask for permission to hold my own child and sometimes I couldn’t.
I will never forget what it felt like to walk into the NICU and see a nurse snuggling my own daughter. It was heartbreaking. People need to understand that the babies in the NICU aren’t just “small babies” they are immature and cannot survive without the support of the NICU and NICU staff.
2. Please don’t ask me when you can see the baby
Sometimes new moms can’t see their baby right away. I was one of those. I didn’t see my baby until she was 27 hours old. And depending on how early the baby was born, a new parent cannot hold their baby for weeks. Please don’t ask when you can see the new baby because the new mom might have not met the baby herself. My focus was not on anyone else meeting or seeing pictures of the new baby–it was on my baby and how she was doing.
3. Please ask how I am doing, but don’t be offended if I don’t want to talk.
The number one thing that meant the most to me and my husband was people asking how we were doing, not just how the baby was doing. It meant so much when our friends and family checked up on us. Even though I didn’t immediately text or call back, they still checked up on me.
Something to consider gifting your friend in the NICU is a children’s book about the NICU to read to their child. Many NICU parents like to read books to their babies in the NICU to help them bond. One of my favorite children’s books about the NICU is “Small but Mighty” by Alyssa Veech.
4. Please bring me food.
Anything that wasn’t hospital food was a Thanksgiving feast. We had a family member that brought us a pizza, and holy cow–that was the best! Once we walked inside the hospital doors, we didn’t walk out until we left to go to bed at night. So we ate out of the hospital cafeteria. One of my friends made us homemade meals for a whole week, and I have never felt so loved and grateful. Food was the biggest help and made me feel supported.
If you don’t live near, sending a food gift card or even some money through Venmo can mean a lot.
5. Please offer to clean my house or run errands.
This is something that is much more of a help than you would think. My mom did our laundry and cleaned up our house when I was still in the hospital. And that meant so much because we left the apartment we were living in at the time, not expecting to have a hospital stay. My friends got our mail and packages. Not having to worry about the simple little things meant so much to me. The last thing a NICU parent wants to do is to worry about laundry or cleaning their bathroom when their child is in the NICU.
6. Don’t stop reaching out to me even if I don’t reach back
This goes along with what I talked about in number 3. My friends never stopped asking how I was doing even when I didn’t talk to them first for weeks on end. My parents constantly reached out to us for support even if I didn’t answer a text or phone call. Knowing that there were people who cared about me gave me the strength to get through NICU.
7. Understand that I am going through one of the worst things a parent can go through
It is hard to understand the thoughts and feelings of the NICU unless you’ve been there yourself. I felt so much guilt for my baby being hooked up to wires because I felt my body failed her. My husband struggled to watch both his wife and newborn under medical watch. He felt helpless because there was nothing he could do to help his family. The grief ate us alive.
Questions like “Would she ever make it out of the hospital?” “Is she going to be ok?” were swirling around in our heads and hearts. I wish the people in my life understood that we were dealing with things as first-time parents that some parents never have to deal with–wondering if our child was going to live. And THAT is a feeling you never want to feel.
8. Understand that I need all the support I can get.
I need support. My husband needs support. Parents of preemies need physical, emotional, mental, and spiritual support. They need someone to help them clean their home, watch the other kids or get groceries. Those parents need someone whose shoulders they can cry on. They need someone who can help them process the trauma they are currently experiencing. If the parents are religious, they need support there because it might cause them to doubt.
Through my husband’s upbringing, he was looked down upon and shamed for expressing emotions and mental struggles. He struggled to accept that seeking help through professionals was okay. We both needed to seek out help from professionals to work through the trauma we experienced.
9. I need help, but I am overwhelmed.
When your child has a NICU stay, you are thrown into this experience. Your number one focus is “I just got to get through this”. Days are long and they pass slowly. You know you aren’t okay, but you aren’t sure how to express it.
The greatest help I received was after I sent a text to one of my friends “I need help. I am overwhelmed”. She immediately, without question, arranged to bring me and Steven homemade dinners for a week. She drove to the hospital and met us there so we didn’t have to leave. And that is something I will never forget. That act of service made me feel loved, supported, and cared for.
Don’t just ask, “How can I help?” Tell the parents, “I am bringing you dinner tonight. Where do I meet you?” or “I am going to clean your house, where is your extra key.”. Sometimes you don’t know how to ask for help, so when others offer specific tasks, it relieves a lot of stress.
10. I may be anxious/depressed because this is not how it was supposed to go.
This was one of the number one things both I and my husband struggled with during the NICU stay. It was not how it was supposed to go. Both of us liked to speculate if my water would break at 40 weeks, if I would go overdue, etc. That was taken away from us. We didn’t have any choice in how our daughter was brought into the world and it was out of our control. It was a matter of life and death. Having your life turned upside down and having to make decisions that have life-or-death consequences is so scary.
I need you to validate me. I need you to tell me, “Wow, I am so sorry. That is so scary and hard”. I need you to tell me that you are sorry for the way my baby’s birth turned out. Please don’t shame me for being upset about the birth and NICU stay, because it wasn’t supposed to go this way.
Becoming a NICU parent is scary and it is important to support these parents. No parent wants to experience their newborn having a NICU stay, but it happens to some.
Things to know about the NICU:
Why do babies go to the NICU?
There are many reasons why babies go to the NICU. Often times it is because they are born prematurely (<37 weeks). When babies are born premature, they aren’t completely ready for the outside world and need extra support. Babies who are also born with a low birth weight can go into the NICU as well. Babies who are born full-term can also go into the NICU for different medical needs such as heart problems, breathing problems, etc.
How long do babies stay in the NICU?
This is very dependent on the reason why the baby is in the NICU. Typically, parents are told to expect their baby to be inside the NICU until their due date. Those whose babies were born on or near their due date and are in the NICU for other medical needs (such as surgery) will be in likely in the NICU longer than their due.
Where do the parents stay while the baby is in the NICU?
This is very dependent on how the hospital is set up. In the NICU and hospital we were in, the NICU was in one big room with curtains you could close for some privacy. We were able to sit on chairs next to her incubator and could stay as long as we wanted. Other NICUs have private rooms or places for their parents to sleep. The Ronald McDonald house can sometimes be an option as well.
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I think what you are saying here is exactly what a mom who has been through this experience would say. It is really true. Your post also helps one to come to terms with what they are going through and acknowledge that it is ok to be feeling scared, anxious, hopeful, depressed, and all the emotions you go through when your baby is in NICU, because you go through so many!
You do go through so many! It’s an emotional and scary journey. I will never forget what going through the NICU stay was like.
This was so important to read. Thank you for sharing this. I don’t think people realize how hard it is for the family who is going through this. While I have not personally faced this, we almost did with our second daughter. She was stillborn, but had a chromosome issue and CDH and we would have been looking at a NICU stay.
People don’t. And those parents need all the support they can get
It’s really heartbreaking to see one’s own baby in NICU. Through your writing i can understand how terrible it is.
It is very terrible. I wouldn’t wish it upon anyone.
I hesitated to even click through because I didn’t want flashbacks. I’m glad I did <3 But honestly, I didn't know WHAT I needed then. Thank God for NICU nurses – they knew my needs before I did and led my husband down the path of reaching out to others to share a lot of what you said!! When all of the excitement leads to uncertainty, people don't know how to react and I think you certainly nailed it here.
Thank you so much for your sweet comment. I am so sorry you had to experience a NICU stay. How is your babe now?
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