This Is What NICU Parents Want You To Know

Last Updated on January 22, 2024 by Allison Lancaster

It’s only been four short months since our second NICU stay, but it is still fresh in my mind everyday. Last month was #NICUAwarenessMonth and I am so glad that there were articles and information floating around on social media. However, there is so much work to be done to bring the general public’s knowledge about NICU life up to speed.

I talked recently about how we need better mental healthcare for NICU moms and that article has gone viral. I had no idea it would do so well. It truly warms my heart to know that what feel resonates with so many. It also makes me sad that there is such a large gap of mental healthcare across the US for NICU parents. I believe that a huge part of the gap is that unless you’ve experienced the NICU as a parent or close relative/friend, you really don’t know what to say, do or expect. I’ve had several people reach out to me that have friends and family members with NICU babies and the question I keep getting over and over is “how can I help?”. While there is no one answer that is really a right answer, there are some things that NICU parents want you to know.

This Is What NICU Parents Want You To Know

• We aren’t really sure how to feel, either. We probably didn’t expect our baby to be in the NICU and we really don’t know how to feel or what to do.
• We don’t fully understand what is going on with our baby in medical terms. Yes, we may ask a million questions, read a thousand articles and sit by our baby’s bedside for as long as possible…but it’s really difficult to fully understand why this is happening to our baby, what the ‘timeline’ is for release or what the longterm effects are. Even if we do fully understand what is going on, we probably don’t want to go fully into details – especially at the beginning of our baby’s NICU stay.
• We are trusting our baby’s life to a medical team. Yes, they are professionals and know what they are doing…but, our new baby’s life is in the hands of strangers.
• We are in physical pain. More than likely, as a mom, we just went through a difficult delivery. We are trying to get the hang of pumping as many drops of colostrum for our baby as possible. We are literally in excruciating physical pain. We are exhausted trying to run back and forth to the NICU as often as possible. We likely have stitches and/or staples.
• Please don’t say “I know how you feel” unless you truly do.
• If you were the parent of a NICU baby yourself, please share your story. It helps. It helps us to know that we aren’t alone and someone else understands.
• What we are going through is not normal.
• We are experiencing a large amount of grief, most likely. Grief over what we thought our birth and newborn experience would be. We are leaving the hospital without our baby in our arms. We are going home to an empty nursery.
• If we left the NICU several days/weeks/months ago, the pain is still fresh. It still hurts. Things still remind us of the NICU and take us right back there. Be patient with us. We may not be able to visit a hospital for a bit. It may make us a bit emotional to see photos of you and your newborn if you experienced a normal birth. Things will trigger us, just love on and hug us.
• We feel extremely overwhelmed. We may have other little ones at home. We have jobs. We have spouses. We aren’t sure what to do, how to handle this, how to feel. We may be wondering how we are going to pay off these high medical bills.
• Our baby may not look like a normal baby. Whether our baby is a preemie or hooked up to oxygen, feeding tubes and monitors…our baby doesn’t look ‘normal’. It’s overwhelming to us and heartbreaking. Forgive us and be patient if we aren’t ready to share a ton (or any) photos on social media or even privately through text.
• We need care too. We need to be reminded to eat and sleep. We may need help with our other children. We may need some additional time off of work. Anything that you do for us will help, whether it’s dropping some paper goods off at our doorstep or sending us a gift card for gas. It means so much to us.
• Please don’t be offended if we don’t want visitors for awhile. My NICU baby was born in June and we are now in the middle of cold/flu season. We are still keeping her in our home for the most part to keep her as well as possible. It’s not you, it’s us. I’m a germaphobe and some other NICU parents may be as well. We want you to get to know our baby, but our anxiety levels are super high after what we’ve been through.
• Please don’t send flowers or balloons. This may not be the same feeling that all other NICU parents have, but for me…it was. When our son was in special care, we were sent a beautiful floral/balloon arrangement. While it was the sweetest gesture and so beautiful, I couldn’t even look at it. My husband had to sit it in the floor because everytime I would see it, I would cry thinking of how happy I was ‘supposed’ to be and how sad and worried I truly was.
• In our case, there was a complete and utter lack of privacy. We were sitting in a room full of other babies and parents while trying to get to know our sweet girl. We were told when we could and couldn’t hold her and when we could and couldn’t visit. We often called to check on her only to be told the nurse was busy and to call back later. This is especially difficult for moms, we’ve carried these babies for 9 months and now we feel like we have no control over parenting them. While the medical professionals are doing all they can to heal your baby, it’s really difficult to not even be able to feed your own child.
• We are forever changed. This is one common thing that all parents of NICU babies have said to me…whether their baby was in the NICU 8 days or 8 years ago. They are forever changed. They forever remember details about their baby’s NICU stay.

There are so many things that being a NICU parent has changed for me. I am so much more thankful for the little things. I no longer wish my babies wouldn’t grow up, I am thankful that they are healthy enough to grow. Yes, I still deal with some anxiety when an ambulance passes me on the highway. There will always be a part of me that wishes I had gotten to experience a ‘normal birth’ and bringing my baby home after a happy hospital stay. However, it just wasn’t in the cards for us. In exchange, I have been given so much more – I’ve met and gotten to know an amazing community of NICU parents. Parents who have gone through much worse than we did and who are so positive. Parents who have reached out to me and thanked me for my words on mental healthcare for NICU moms. Parents who have nodded their heads and said ‘yes, I can relate’ or ‘I’ve been there, I’m here for you’. I am forever grateful for these precious souls. If you know of a parent who has a NICU baby, I encourage you to handle them with a little extra care and remind them how you are there for them.