Hand to Hold's Official Blog: Written by Parents for Parents

Only a NICU Parent…

I found this spot-on list on Baby Girl Bown, absolutely loved it, and wanted to share…
(I tweaked it slightly to better suit our Life after NICU audience.)

Only a NICU Parent

Would be excited about…
  • increased feedings.
  • 5 grams of weight gain.
  • O2 levels.
  • an inch in length.
  • seeing the eyes of a 4-week-old for the very first time.
  • poopy diapers
  • graduating beds.
  • going to the intermediate nursery.
  • dread walking out of those doors to go home to sleep.
  • 10:00pm or 5:00am phone calls to let you know your little one did something good/new.
  • going to the hospital (hey, we get to see our kids!).
  • CPR classes (they’re coming home soon!).
  • outgrowing clothes.
  • hearing your baby cry for the first time, weeks old and crying just as hard in joy.
  • the fear of seeing their child for the first time.
  • that Brady’s are not referring to the Brady Bunch.
  • what CPAP means.
  • the pain of not holding your child for days
  • the workings of an isolette.
  • what each beep means.
  • how important kangaroo care is (to baby and mom/dad).
  • that a parent’s job is to fix whatever hurts their child – and know the pain of realizing you can’t.
  • what a PICC Line is.
  • just how important surfactant is, and what it is for that matter.
  • and understands the realism of adjusted ages.
  • what it feels like to cry the first time you see your baby in a crib.
  • the agony over sending birth announcements. 
  • how amazing tiny fingers feel clenched to your hand.
  • the pain of hearing a woman in her third trimester complaining about her pregnancy, and wondering that that would be like.
  • and finally understands the metric system.
  • there are no choices in the NICU – you have to be strong. 
  • cracked and bleeding hands from washing them so much and coating them constantly with hand sanitizer.
  • how hard it is to trust 100+ people you have never met before care for the child for whom you have waited a lifetime.
  • what it’s like to argue with each other over who changes the diaper – because you both want to – its a chance to touch your baby.
  • every inch of their NICU, what walls they cried against, what nurseries they ‘lived in’, what shifts each doctor, nurse, therapist, and staff member works.
  • that you will be a germaphobe for at least the next 2 years, people will think you are weird, and you will know you are literally saving your child’s life.
  • 50 nurses by name, and their kids’ names.
  • can give better directions to the cafeteria, gift shop and parking lot than the employees.
  • that every day in the NICU makes you one of the lucky ones.
  • just how important each new day is and how much significance a new day holds. Sure, every day to a parent of a healthy, full term baby means a lot, but we go in not knowing… and that is scary.
What else would you add to this list?

Aimee Sprik About Aimee Sprik

Aimee Sprik (IL) is mother to Connor, born unexpectedly early at 26 weeks, in December 2008, due to an infection. Connor, with his parents, survived a complicated 120-day NICU stay, which changed their lives forever. Since bringing her son finally home, she's felt passionately about volunteering her time and resources to supporting fellow NICU parents, both at the hospital where Connor was born, and by co-founding Life after NICU, an online parent support forum now moderated by Hand to Hold. You can follow Aimee on her personal blog, Sprik Space, or send her an email.


  1. michelleeclancy says:

    This made me sad and happy at the same time. Happy that someone understands and sad for the ones who weren’t ” the lucky ones” ad have lost a child in the NICU. We were so lucky to have a feed and grow baby. Thanks for sharing

  2. Would be excited about Baby’s rejection of the bottle only to demand the breast. But, hell, as long as he is eating, I’m happy. Knows the struggle to be there for each feeding and still find time to pump every hour so you’ll be ready when he’s ready to breastfeed.

  3. lol….seeing a babydolls clothing and considering purchasing it for your baby because it’s the only size clothing that will fit

  4. Wow, that’s a list! My boys were in the NICU for 3 months (in intermediate for a month). I nodded my head at everything on this list! It’s amazing how much you learn when you’re there all the time!

  5. As an active great-grandma of a beautiful NICU baby (who is now 1 year old, healthy and happy), the agony of watching your daughter and her husband (the grandparents), and your granddaughter and her husband (the parents) going through all of that list…and the joys of all the progress listed…it has been quite a journey!!!

  6. I would add accepting that you have to mourn the loss of the child you expected and cherish the the child in your arms.

  7. Mis Kristy says:

    Maybe the fact that preemie diapers are about half the size of a cigarette pack and that it your child or children are sent to a hospital out of town as mine were there is a lot of agony being away from the child or children

  8. mommyzilla says:

    Learning to place an NG tube so you can bring home your baby sooner.
    Realizing that sometimes more then one chest tube is needed to keep lungs inflated.
    Sneeking a touch in when your not allowed.
    Sitting for hours at baby’s side just staring because touching is not allowed.
    Becoming fimilar with many drugs and what they are used for.
    Going to sleep means closing your eyes hoping you don’t fall asleep too deeply you won’t hear the phone under your ear.

  9. Single Mom BB says:

    Knowing your baby is hungry and not being able to feed her.

  10. Knowing what a Broviac Central Line is.
    Learning how to clean and care for the Broviac Central Line.
    Knowing what TPN is.
    Learning how to hang TPN and hook TPN up to the Central Line.
    Having baby pass the 90 minute Car Seat test and knowing they will be coming home soon after that test.

  11. crying both happy & sad tears when you leave your familiar nurses & pod mates because your graduating to the next level…

  12. Jennifer- Justice's mom says:

    This made me cry as well. It was def a rolletcoaster ride. I remember people telling me when she cams home it would be behind us ans forget about everything. This ia not true, I will never forget. but I am thankful for everyone who helped n my baby is a miracle 😉 Having her @24 wks has forever changed me. God bless u all n our children.

  13. Finding an outfit small enough that actually fits your baby!!!

  14. having to wait for someone’s permission to feed your baby.

  15. Krista Kotsay says:

    Just wanting the answer of yes your babies or baby are going to make it

  16. What it’s like to have someone tell you when you can hold your baby

  17. That even after your baby comes home you will obsess over everything they do wondering if they will be autistic, learning delayed, ADHD or have other cognitive problems. I know how lucky I am that my 3 1/2 year old former 27 weeker is smart, funny, curious, and healthy!

  18. Anonymous says:

    Knowing what a car bed is, and having to buy one from the hospital’s gift shop.

  19. Anonymous says:

    what its like to dress them for the first time

  20. Anonymous says:

    Bringing home the empty carseat. and the mom about to be.. seeing us walking out of the ward with it. She cried …we cried.

  21. Anonymous says:

    Looking at your child everyday and smiling to your spouse with tears in your eyes just because 6 months, a year, two years ago, you couldn’t have imagined her being so big and so amazing.

  22. Denise Lunn says:

    Not knowing why she came 3 months early after you made sure everything you did benefited her.
    Wondering if trying for #2 will put you at the same risk.
    Seeing her cry but because she is intubated not hearing her cry.
    Being angry anytime someone you hang out with doesn’t tell you that their child has a cough.
    Knowing that your baby is special because she fought harder than most will in the first 3 months of her life.

  23. Anonymous says:

    My NICU baby is 23 and getting married in August.We only made it through on faith and a great support team. Good things do happen. Praying for all.

  24. Wow what a list! My twins born at 35 weeks were separated at birth. One twin stayed with me and the other was transported to a hospital nearly an hour away! Proud to say our boys are healthy happy age 4!

    My Christmas present was an envelope with his first hair cut…his head had to be shaved for an iv.

  25. Anonymous says:

    The agony of leaving one baby in the NICU when his twin gets to go home. My boys were separated for 17 days. I know it doesn’t sound like a long time but I wasn’t allowed to take the “graduate” back for visits. I had to find someone to care for him while my DH worked so I could spend some time at the hospital too.

    • Anonymous says:

      The boys were born at 30 weeks 5 days.

    • I totally understand that. My twins were separated for 19 days and it felt like an eternity… That was the most difficult time of my life.

    • Anonymous says:

      I had my twins at 36 weeks took our tiny 4.6lb baby home while we had to leave her much bigger twin at the hospital was the most difficult thing I have ever had to do. It wasnt the longest stay (10 days) with more ups and downs I ever thought possible. My heart always breaks for those who weren’t as lucky as us.

  26. Jesslyn Canales says:

    The joy of just holding her foot. Not nearly enough but so damn wonderful. Also, the agony of knowing no one held your baby for the first minutes, days, and hours of her life.

    • I can relate to this. The doctors held up our 3lb 7oz baby girl and showed her to us, then swept her away to the NICU. We got to visit her, but couldn’t hold her.

  27. Jesslyn Canales says:

    Ever being alone with your baby. Having someone watch you closely while you feed your baby. Having to go right back to work so you can save your naternity leave for when she gets released.

  28. Bringing your baby home finally and not sleeping for days, literally just staying awake and staring at him in his bassinet because you are so damn nervous something awful is going to happen while you are asleep. Taking his temperature 20 times a day “just to be sure”. Stressing over if he has pooped and peed enough. Changing his outfit constantly because you think he is too hot or too cold. Never wanting to leave him…EVER! Getting upset with your support system because they don’t understand why you can’t set him down or let them hold him long enough (because you are trying to make up for lost time). Getting frustrated with the pushy people who demand to come visit you when all you want to do is cry and steal every small moment you can get for yourself.

  29. Ten years later you read this list and can relate like it was yesterday.

  30. My daughter was born at 31 weeks and spent 8 weeks in the NICU. That was 20 years ago. But trust me, it still feels like yesterday. The time you spend in the NICU forever changes your life. You never forget even the tiniest of details. My only advice is to slow down, worry only when you need to and cherish each detail and milestone. We definitely are a different group of parents. I wish there was a site like this when my daughter was a baby. The only support group we had was the other parents. Hang in there!

  31. Lacie @thedanielsons says:

    This list made me so happy/sad and just emotional. My husband is a nicu graduate (24 years ago) and his mom was told he would not live….i’m proud to say he is alive and well, and our first soon (now 2) was also in the nicu , although not as long as his dad, I still relate to over 90% of the list. I’m so thankful to the amazing nicu staffs all over the world who do amazing things every day. And for helping bring the two must important men in my life

  32. Kassandra says:

    My son was born full term but began having seizures at 3 days old and had to be transfered to the nicu where he stayed for almost 2 weeks and it was one of the hardest things i have ever to go through. I remember not being able to touch him or feed him and freaking out every time a monitor beeped and i hated seeing him so doped up on anti seizure medicine to the point that it was hard to tell if he was breathing. I was able to stay at the hospital the entiretime but i remember how it felt to fight sleep because i was terrified something bad would happen while i was dozing and not being there for him. Going home was even worse because we never knew when his next seizure would be and if we could handle it ourselves. i swear i didn’t sleep more than an hour a night and didn’t leave his side for a second. I am proud to say though that i have an amazing 15 month old that has been seizure free for around 10 months now thanks to a wonderful anti seizure medication and amazing doctors.

  33. Knows… that your body will continue to act like you’re pregnant even after you aren’t any more. I gave birth to my daughter at 31 weeks. A few days after I was sent home I ended up with a skin rash that is normally associated with pregnancy. Of course, this meant that I had to first go see my own doctor to make sure I didn’t have strep before I could go back to visit her. Then when I did visit, I had to be covered from head to toe, masks, gloves, etc.

    Knows… that a simple thing like tape placement is very important.

  34. Anonymous says:

    i relate so well with these, i had my angel at 26 weeks less just a little over one pund and she spend 10 weeks in the hospital, the long endless nigths and the fear of going to the hospital the next morning. Standing next to the baby in the incubator and just looking helplessly. so many tears shed and so many happy memories. the fears of the apeanic attacks, the list is endless, but Thankfully she is a strong fighter and survived it all

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