Making it Through the NICU: Tips From One NICU Mom to Another 

Some REAL TALK from a NICU loss mom on how to be okay when you're really not okay in the NICU.
Michelle Valiukenas, Executive Director of CLTF & NICU Loss Mom

NICU loss mom here, and I’ve partnered with Qeepsake to give you some REAL TALK about NICU life. Just about every family that has babies in the NICU had little to no preparation for the experience. In most cases, a pregnancy was going along well until it wasn’t. Other times, something happened during labor and delivery that caused the plan for parenting your newborn to change drastically. It’s scary, unexpected, and confusing. I hope some of these tips will help NICU parents navigate all of the complexities.


I put this first and in all caps for emphasis. I cannot tell you the guilt trips I took myself on. And I’ve seen so many other parents go on their own version time and time again. But here’s the thing, there’s no predicting this. More importantly, one decision or one action or non-action during your pregnancy did not cause this. It’s easy to blame yourself or your partner.  The unfortunate truth is that these things just happen. To good moms and to good dads. It is so hard to live in a space of  “why did this happen to me.” And the truth is that there’s no good, logical, reasonable explanation. It’s just unfair.

And despite it all, you’re doing a great job.
NICU Mom Erica, leaning down with her eyes closed to kiss her NICU Baby, Caden. Caden has his arms wrapped with IVs, and has a breathing tube in. He looks to be just born. You can see the love, gratitude and pain in Erica's face.

Remind yourself of this every day. Write it down on a post-it and stick it on your bathroom mirror, in your car, wherever you need to see it over and over again.  If you can’t believe yourself anymore, tell your trusted loved ones and have them remind you from time to time. Not just when you are freaking yourself out.

2. Always remember that YOU are the parent.

 A lot of times, in the NICU, it can feel more like you are a visitor than a parent. The NICU doctors and nurses are running around, you feel like you have to ask for permission to hold your child. You’re not the one taking care of your baby 24/7.  But regardless of the environment and the fact that none of this was anything like you planned, you are the parent.  So, you can speak up and advocate.  Do not just take your NICU nurse or doctor’s words at face value if something feels off to you. You don’t have to let everyone else take over.  I hope I can empower you to ask questions, challenge what medical professionals are saying, make sure to be part of the equation in every way possible. Ask to be part of rounds.  At the end of the day, you are the one who knows your child best, so utilize that knowledge and skill to speak up for your child.  Your child doesn’t have a voice yet, so you’re their voice.

The first rule of parenting is that gut feelings serve an important purpose. Trust yourself. 

3. Ask questions.

Adding to the above advice, ask all the questions you want. So often, we are so deferential to those in healthcare positions because their education and status make it seem like they should know better.  And yes, the medical professionals you encounter in the NICU are some of the smartest, most creative, most passionate people you will meet.  There will be neonatologists that are so smart that you may feel intimidated. But, you are an expert too—only you know your child truly, fully. If you have not already been given a notebook and a pen, then get one and write everything down.  Write down your questions as you think of them, write down notes about what you’re hearing. 

Ask your nurses to provide you with further information after a doctor talks to you. Our baby, Colette's primary nurse was absolutely amazing. After doctors spoke to us and we asked our questions, she would print off an informational sheet about Colette’s condition or a procedure and put it in a folder for us. This allowed us to look through everything again (away from the doctor and all the medical jargon) and be able to truly absorb the information. Then we were able ask more pointed questions.  Ask for that, a summary of what is going on. Do whatever you need to fully understand the situation and be included in the decision-making process.

4. Avoid comparison.

Don’t compare your baby to anyone else’s baby. There is this natural human condition that leads us to look at another child and compare where they are to where our child is. This is not healthy in general, but in the NICU, it is absolutely vital to ignore playing the comparison game. In the time it takes me to write this sentence, a NICU baby can have a complete 180, both good and bad. That means when you see another baby at the same gestational age or close, you might think man, my baby is really not doing so well. But you don’t know if they’re just having a good day or if there are more issues than meet the eye.  

So, fight the urge to compare and try to stay focused on your baby’s progress.  My mom (a NICU mom herself) told me in the first day or two after Colette was born, the NICU is a rollercoaster. You can start the day off with everything being fantastic and end the day in panic and vice versa).  Just hang on. Focus on your ride, your baby’s ride, and ignore the urge to compare.

5.  Share as much or as little as you’re comfortable with. 

You control the information that is disseminated to others and that you take in. Some parents like giving a play-by-play to family and friends, and perhaps even on social media. Other parents don’t like to say anything at all and keep the information and ups and downs very close to the chest.  Some parents fall somewhere else along the spectrum. There is no “should” on this, there is no right way or wrong way. YOU get to decide when you want to share and when you want to be discreet. And what you start off doing may change during your journey (and may change back and forth). Do what feels best and serves you and your baby in the moment.

In that same vein, you do not have to take in all the contact you receive either. If you find talking to a friend is helpful, then do it. If it becomes too much, then don’t talk to them or take a break.  There is a lot going on in the NICU. How you decompress, stay motivated, and encouraged will depend on the day and how you feel.  Give yourself the grace and ability to decide what you will take in and what you will not. Right now your job is to be a parent and take care of yourself, you can let yourself off the hook for being a good friend, sibling, or neighbor right now.

Remember to take pictures and journal. You can use a camera or your phone, a notebook or a diary. I recommend using the Qeepsake App to keep track of NICU Milestones and send in entries as you go (just text in little moments and photos whenever you'd like). As hard as these days are, they're also precious and fleeting. You'll want to remember everything, trust me.

6. Speaking of YOU, make self care a priority. 

Lastly, but probably one of the most important points: TAKE CARE OF YOURSELF.  As parents, we want to giving everything we have to our children. When your child is in the NICU, you are subjected to sensory overload. The noise, the smells, the everything of NICU –– it can be a LOT.  Add in that, you may be constantly on edge and fearful. You’re watching monitors, your child, and hoping that the hiccups along the way become merely blips on the radar in the story you will someday tell. Not to mention, you or your partner has just given birth, often in a traumatic situation. It’s the perfect recipe for a burnout cocktail.  

Do not spend every minute of every day in the NICU. Take time to go for a walk and breathe in some fresh air. Eat away from your baby’s bedside or your breast pump, read a book, watch a movie or TV show.  There is a reason why on planes, they tell you to put your oxygen mask on first.  If you are not okay, then there is no way you can take care of others. So, put yourself into the equation and ensure you have some time for you as well as your baby. It’s okay to cry whenever. In front of your partner, doctors and nurses, friends, and in front of your baby. And guess what, it’s okay to laugh sometimes too if the feeling strikes. Laughter is good medicine for both you and your baby.

The NICU is tough, it’s without a doubt, a life-changing experience. There is hope and celebration and there is grief and loss. Not every story is the amazing miracle story that you might have imagined or hoped for. Even the miracle stories, if you dive in, are filled with ups and downs. Hang on, advocate for your child, ask the questions, and don’t compare. Control the flow of information and the amount of contact that feels comfortable to you.

And most importantly, take care of YOU. You’re not alone, and you’ve got this!
The author of this article and NICU loss Mom, Michelle, sitting in front of a hospital with her husband, her rainbow baby and son, Elliott Miguel, and a pink teddy bear with a pink and white bow that represents her angel baby and daughter Colette Louise. Michelle and her husband are smiling.
Michelle Valiukenas is the proud mom of three: her angel Sweet Pea, who she lost during pregnancy, her angel daughter Colette Louise who she lost at nine days old, and her only living child, her rainbow baby, Elliott Miguel. Inspired by her journey with Colette, Michelle and her husband founded The Colette Louise Tisdahl Foundation, whose mission is to improve outcomes of pregnancy, childbirth, prematurity, and infancy, as well as aid in the grieving process through financial assistance, education, and advocacy. Their flagship program financially assists families dealing with high-risk and complicated pregnancies, NICU stays, and loss. The organization’s ability to help families relies on donations and grants and they are grateful if you are able to donate. Michelle also participates and advocates on issues of maternal health, maternal mortality, infant health and safety, and pregnancy complications. Michelle lives in Glenview, Illinois with her son Elliott, husband Mark, and dog Nemo.

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