When it comes to what to say to parents of preemies (and what not to say to parents of preemies), the moms and dads who’ve been there in the trenches of the NICU know best. While not every parent of a premature baby wants to hear the same things, the list below contains suggestions from real families for anyone who has ever felt tongue tied around a mom or a dad coping with the sometimes grim realities of prematurity.
We asked our followers to tell us what they wish someone had told them back in the NICU days and here are just some of the answers we received:
They are your babies. Yours. Not the nurses and the doctors. You gave them life and they belong to you. The babies are only in the NICU a short time compared to the years of full and happy lives they have ahead at home with their family. The staff may know a lot about their health but you will love them, your own flesh and blood, forever. Hospitals can save lives. But you are their parent. Don’t allow them to make you feel any less than the center of those babies universe. ~ Elizabeth
Journal..a lot.. and take many many pictures because as scared and unrealistic as that moment may be it is your story and you child’s legacy. In years to come when it’s hard to remember because you have blocked out so many memories..it will be nice to have that resource available. ~ Priscilla
It’s ok not to be ok. It’s ok to tell people the truth. It’s ok if your baby doesn’t catch on to nursing right away. And someday it will seem like it was all a bad dream. ~ Lauren
No one ever said how guilty I’d feel to put my little one through this all. No one ever said how having my baby home from the NICU and staying a baby for a longer amount of time would make me fall head over heels in love watching their strength. No one told me my daughter would be my inspiration. ~ Dia
Take the milestone book and throw it out the window. ~ Jill
It’s going to be the best experience and journey of your life. Your faith will be renewed. Nothing will be taken for granted. You’ll come to learn and know your own strengths. ~ Gary
It’s ok to cry and it’s ok the go through the emotions of being mad, sad, angry and grateful all at the same time. That if you need someone to talk to strike up a conversation in the kitchen or in the food court in the hospital with other moms, chances are they need someone too. Take time for yourself, it is ok (even though you may have guilt because you’re a good mom like that) to go home and regroup and have a little home time ie:take a long hot shower or bath in your own tub, sneak a nap in your own bed, cook a small meal in your own kitchen, do your laundry in your own washroom ect, take all the help offered even if it seems you don’t want it you’ll be glad you did…. it is ok to have all kinds of emotions and feelings. It is ok for your baby to be completely different from all others they will grow at their own pace and learn as individuals like they are supposed to. Your baby is just fine the way he or she is. ~ Shelley
It’s a long process but to soak in the moments your baby takes a step forward instead of worrying what’s to come. ~ Kira
I wish someone would have told me that some preemies don’t “catch up” at the age of two and that they can have lifelong problems. I wish I would have been given more resources and knowledge so I could have helped my triplets better. ~ Violett
Use the hospital pump! I bought one and took it with me every day. I didn’t realize how different the pumps you buy at Babies R Us and the hospital grade ones were. I figured I spent $300 on a pump I wanted to use it as much as I could. Boy, was that a mistake. Second time around I used the hospital pump for 6 weeks and I had about 8 times the amount of milk that I did the first time. She would take 8oz in a 24 hr period and I would pump about 60. I had the biggest freezer stash ever. ~ Amy
Just do what you can but don’t stress out too much if you can’t always be at the NICU. You will have plenty plenty of time to be there for your baby once they are home, and taking care of yourself is important, too. ~ Maria
I wanted people to do what I needed, to be as open or as quiet as I needed in that moment. I wanted people to think about my son and not compare him to others, as everyone’s journey is different, and to focus on my son while with me in the NICU. ~ Katelyn
Your baby knows that you’re there. S/He needs need to hear your voice EVERYDAY. It is familiar and comforting for them; even though no longer in the womb, they are yet still absorbing your LOVE. ~ Jay
Pick an object and take a pic beside it every week. You won’t believe the difference later! Get lots of footprints and handprints. Keep a journal – you think you wouldn’t ever be able to forget but things will fade. There will come a point when it’s nice to look back at how far they’ve come. Preemies have their own timeline! And they are the boss! It’s ok to take some time for yourself outside the hospital. Your baby won’t remember and they are in excellent hands! Find a preemie support group. Even if it’s just one on Facebook. It’s ok to feel all kinds of emotions or none at all. Everyone copes differently! ~ Laci
Some days are hard and some are even harder so celebrate every little milestone; every oz gained, every hr on room air, every ml drank, every thing it makes the days go by a little easier! ~ Chelsea
Parents need to hear the truth about the risk of disabilities and to be aware of the need for help with learning issues and mental health. We need to hear a balanced picture! ~ Susan
Bring your own lotion and make sure it doesn’t contain alcohol. You’ll be washing your hands constantly with harsh soaps and antibacterials and your hands will crack, bleed, and burn. Seriously, if someone asks you what they can bring you, ask for a high quality, preferably all-natural lotion! ~ Kristen
Keep a journal! I look back now and it’s just a blur, totally in survival mode. Wish I had more memories of what was happening in detail to go back to. ~ Allison
I am thankful that someone DID tell me that my husband and I needed to take time for ourselves and one another. Spending months by a sick child’s bedside is no way to have a marriage, even if it is your reality. The NICU can tear families apart. Take care of your spouse. Support them. Take a date night. Work on your marriage. You’ll come out stronger on the other side. ~ Jamilee
I wish someone had told me to trust in myself as a parent more and speak up when you have questions or want to be included in some of the choices in your child’s care. I finally found my voice after three weeks of my daughter being in the NICU. For the next four weeks I got to be included on the decisions that were being made about my daughter’s care. I did my research and talked to so many doctors and nurses that I felt that I was helping in my baby’s NICU journey. I understood I had to let the doctors and nurses do their job but the choices that I was included in, I made sure I knew what my options were and that, as a parent was a good choices for my baby. ~ Abby
Speak to the other parents in the NICU! Some of the friendships made over such a journey can be for life! ~ Charlie
These feelings won’t go away but they will quiet. And one day this will all be just a bad dream. And remember it doesn’t matter if your little one was there a day, a week, a month, or a year; your feelings are valid. Don’t weigh how ill your baby is against anyone else, all of our journeys are different and the feeling and reactions that come from them are valid. ~ Kristen
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