6 Lessons I Learned in the NICU

things I learned in NICU

When you bring your little one into the world, the last thing you’re probably expecting is for anything to go wrong and require the services of Neonatal Intensive Care (NICU).

But, such is quite often the case for many mamas and their babies, and having a baby in NICU is an experience that’s incredibly similar and entirely unique to every other NICU experience you may have heard of or lived through. Below, we share some perspectives from NICU mamas and the things they learned in the NICU.

What I Learned In The NICU By Sarah Rush Van Dermyden

Anyone who has lived through a neonatal intensive care experience would probably agree with me when I say “if you’ve heard one NICU experience, you’ve heard one NICU experience.”

I became a NICU mom on October 27, 2006.  Our twin baby “b” was born with pneumonia in her small lungs, and was hooked up to a ventilator for 10 days.  Additional days were needed on oxygen and a cpap machine with an entire stay of 19 days.  In 2008, our son was born, and he experienced a similar complication although his stay was much shorter–only 7 days. Following our discharge, I discovered I was a part of club to which I never expected to belong.

Once home, I discovered that coming home from the hospital didn’t mean sunshine and unicorn kisses.  After talking to other NICU moms, here are some things we all share in common.

1. You will feel cheated.

Let’s face it.  You wanted those first precious days with your baby snuggled up in the new clothes and blankets you lovingly prepared and chose for your baby.  You had dreams of being wheeled out of the hospital holding that precious bundle while you headed home.  Instead, you spend every minute sitting next to a bed where you probably aren’t allowed to touch your baby.  I missed their first feeding, their first bath, and their first diaper change. In the grand scheme of things, sure, it’s not much time, but those are things I can’t ever get back.  I’m just going to come out and say it.  It sucks.

2. You will feel guilt.

Oh the insidiousness of guilt, because in the case of NICU stays, it hits you twice.  First, of course, is the guilt you feel about your pregnancy and baby.  I could have eaten better, I could have prevented that c-section, I should have been less active, I should have been more active, maybe I was too depressed, or maybe I took too much tylenol…Moms are great at making themselves feel like junk, and NICU moms are the elite guilt mongers of the parenting world.

So, as if feeling guilty about yourself isn’t enough, you discover another form of guilt swirling around your mind–survivor’s guilt.  For me, this didn’t happen during our NICU stay, it happened years later when I met a twin mom who lost her daughter, born at 35 weeks, to complications from pneumonia.  My twin daughter, born at 35 weeks, who survived pneumonia was 6 years old at the time.  Guilt.  My baby survived and was thriving in first grade while this woman was burying her child.  As I meet more moms, I meet more women who never got to bring their babies home.  I think, “how dare I feel cheated?  I had to wait 19 days to bring my baby home, at least my baby came home.”

3. Coming home from the hospital is only the beginning.

In our case, coming home from the hospital meant visits from Early Intervention and home health nurses.  It meant we were obsessed about milestones.  It meant writing down every feeding, every poop, every pee.  It meant RSV shots and staying at home for 6 months.  It meant me eventually leaving my job to keep up with therapies and appointments.  It means you never stop reading, never stop learning, never stop wondering if you are finally free from the complications that come from a NICU complication.  You learn that everything from vision problems to learning disabilities can stem from a NICU stay.

4. You have an amazing pain threshold.

Moms, you know you hurt when your child is hurting.  We want to take away every cut, every bump, and every mean word ever directed to their child.  When you’re a NICU mom, though, you’re helpless.  I can’t even begin to describe to you the pain of watching your baby cry with an intubation tube in her mouth so no sound comes out, and you can’t scoop her up and hold her to your breast and comfort her.  The pain of watching failed attempt after failed attempt of getting an IV or a PICC line into my son while I stood behind glass and watched.  You survive it, and you come out of the experience feeling like a badass street thug. You just won the gold medal of parenting in a crisis, and from here on out, you feel like you can take on anything.

5. You will experience flashbacks.

For me, the smell of the soap in my pediatrician’s office is enough to send me back to those early days in the hospital.  With social media being what it is, I also have discovered I can’t handle the picture of a sick baby.  It seems a bit foolish that seeing a picture of a baby with a nasal cannula can cause an anxiety attack in a person, but the truth is, it does.  I suppose you could call it PTSD in my case, but at any rate, the emotions can come rushing back at the drop of a hat.  Our first NICU baby is entering 3rd grade, and I still have these reactions.  I can’t help but feel a bit foolish if I’m being 100% honest here, but, well, it’s the truth.

6. You lose your innocence.

This may be my naivete speaking here, but I trusted my doctor.  I honestly felt like because I planned and took care of myself, that absolutely nothing would go wrong.  The truth is, things go wrong all the time, and there are no guarantees in the birth of a child.  Sure, taking care of yourself helps.  Good prenatal care, healthy lifestyle, and a stable relationship will only benefit you in the birth of child, but the truth is, it isn’t always enough.  With the birth of my son, I discovered that lightning does strike twice.  He was full-term, but we decided for a repeat c-section 10 days prior to his due date.  I was assured by my doctor that everything would be fine, but it wasn’t.  The same year, a few months after he was born, a new study was released that optimally, we should have waited until he was at least 39 weeks.  Those extra days may have prevented his NICU stay.  Perhaps if I’d attempted a vaginal delivery after a c-section, I may have avoided it.  Either way, I learned that it’s my job to educate myself and blindly listening to my doctor was no longer an option.  Jaded?  Probably.  Smarter?  Definitely.

My personal NICU experience was much different, with an entirely different outcome but I still feel many of the things Sarah listed.

My son was born after almost 24 hours of labor in an emergency c-section. He was perfectly healthy, and I’d had a normal pregnancy, with the exception of conception through IVF after 12 years of infertility and close monitoring throughout as he only had one kidney.

When my son’s fetal heartrates began to be more erratic, my doctors said it was time to take him (he was 41 weeks) and just as one last measure to try and have him come on his own before surgery, they broke my water.

That, unfortunately, was the beginning of his end. Unbeknownst to any of us, I had vasa previa. It’s rare, and essentially a condition where not all the blood vessels from baby to mama are contained in the cord. Breaking the water broke one tiny vessel and my son and I both began to immediately and profusely bleed.

He was delivered in less than 6 minutes, as we’d prepared for a c-section, and immediately whisked away.

He’d lost so much blood, so much oxygen. My small but mighty hospital just couldn’t meet his needs and he was life-flighted to nearby Georgetown Hospital in an isolette.

I didn’t get to hold him. I was fighting for my recovery. I didn’t get to see him for more than two minutes max. I was in the process of being transferrred to Georgetown myself when my husband called me and told me he was dying.

In fact, he’d ‘died’ several times on the flight over. That he made it to NICU and was able to be held by my husband was miraculous. He died almost ten hours after he was born.

My son died in NICU. Even though I am technically a NICU mom, saying I am feels like I’m a fraud.
I never faced the traumas that Sarah and so many other NICU moms had to have in their faces day-in and day-out.

But I never got to bring my baby home either. Never got to hold him, never got to know his weight in my arms. And so, for different reasons, I learned that the NICU was a place of incredible hope and tremendous sorrow.

Sorrow and hope that last a lifetime, and as Sarah said, steal your innocence. I will never be the same, and I’ll never hear a NICU ‘story’ or see a NICU baby in the same way again.

That’s the thing, though. Each story and child is unique. Though my baby died, I can’t imagine any better care he could have from birth to death. Though the NICU is the place that brings my heart palpitations, it’s also the place my husband ushered my son into Heaven in, and those are conflicting emotions you just can’t reconcile sometimes.

So whatever you learn about NICU, know this. It’s your experience, and for better or for worse, your feelings are authentic and yours. They’re your memories and your life-shaping and they don’t just end after the NICU time is over.

Photo: Nenov Brothers Images/Shutterstock

15 thoughts on “6 Lessons I Learned in the NICU”

  1. Omg….thank-you for this article. Both my kids were premies, my son,4lbs 1oz and daughter 2lbs 6oz, not twins. We spent so much time either in the hospital or driving back and fourth. They were both born in Vancouver but we lived in Abbotsford. We were so over-whelmed with everything, even now, i couldn’t begin to explain. However, they survived, with only minimal effects from this. They are now 28&26 yrs old. Thank you again for sharing your story.

  2. This is all incredibly true, and in my case perfectly timed. Our NICU baby came home yesterday(she had a combination of chorio & viral infection in her lungs), and everything you’ve mentioned is what I’ve felt so far. Now that we’re home it’s not over either, every wheeze or gasp panics me – is she breathing, is she getting a cold, is she still sick?

    Thank you for sharing, as someone who never expected anything like this to happen to ME, I spent days sobbing, feeling alone and helpless. It’s reassuring to know others understand this reality, even though I wouldn’t wish it on anyone.

  3. Got in my car and saw this article as i waited for my car to warm up. Started BALLIN’!!! Flood gates opened as I skimmed these amazingly written words that captured such a unique and ever-lasting experience for NICU parents. Thanks for sharing.

  4. Right on true from my experience. The entire hospital system uses the same kind of soap as the NICU, so I get flashbacks every time I go there. I wish I had read this around the time my daughter was born. It never occurred to me that my guilt for what I did during the few days before her birth might be something other than the thoughts of someone who did something horrible to her baby or that my obsession with milestones wasn’t just me being obsessive.

  5. Ugh yes… I felt like everyone got to meet him before me. Daddy and both sets of grandparents touched him before I was even awake. I even started pumping milk for him before I even met him. When I finally did meet him I couldn’t believe how disconnected from him I was, I didn’t feel like his mom and felt awful for feeling that. I didn’t actually start to feel a connection with him until I held him when he was 10 days old. When I was released from the hospital without him, I went home and cried, I missed feeling him kicking inside me. I felt like we were just getting to know one another when he was pulled from me. That micro preemie is.now 2.5 yrs old and amazing at everything. I still have nightmares and panic attacks from his birthday til the anniversary of his discharge from the NICU. I hope those fade with time.

    1. I had a micro preemie, born at 26 weeks and 800grams. I can tell you that he is a very healthy and happy 2 year old. I suffered from depression and ptsd and I am still on meds to help me cope. I do however believe it becomes easier after some time has passed. I was fortunate in that we could hold him after 6 hours had passed after his birth, even though he was on cpap. I also feel that we were privelaged in that we were able to watch him grow outside the womb..something most moms will never get to experience.

  6. It’s like you were right there, living my life! (Sorta) I had 3 perfectly wonderful pregnancies and gave birth vaginally to 4 wonderful kids. Then baby number five came around and was born at 30 weeks due to placenta previa. She was 2 lbs and extremely anemic. Our 8 week stay was devistating but the aftermath was worse; the guilt, the tears, the guilt the nerves paranoia and PTSD. Then I thought, yeah I’m getting better and I see a little kid in nicu on tv (Josie duggar) and totally melt down.
    Here’s to healing!

  7. With you all the way! We have been calling the NICU home now for 406 days. Yip… 13 months and 2 days. Agree with you a lot but also have my own long list of lessons I have learned. 🙂

  8. Thank you for putting in to words that explain my feelings so beautifully. My pregnancy was watched like a hawk for possible incompetent cervix due to previous cervical cancer issues. We spent 9 months watching for danger, I went in to labour on my due date, we thought we were safe. 30hrs of Labour, many interventions and stress later our son was born with marconium ingestion. He was taken immediately. I didnt know what he looked like for 3hrs, the days that followed involved cpap, nasal cannulas, stomach pumping, heel prick glucose tests etc. I didnt get any post birth photos, or skin to skin. I feel cheated. Heart broken. People say “he is healthy and that all that matters”, sure I agree, but I am left with ptsd, anxiety, severe post natal depression and ocd from my sons birth and the days in nicu. I still feel like my son isnt my own, and im certain that is due to being unable to pick him up as I pleased during those days. I can barely leave him for an hr with my husband because I feel he is being taken away from me. Pandoras box. Such a tough experience. But yes, im a bad ass mamma now. I am a lioness.. not to be messed with!

  9. Great article. My baby was delivered 6 weeks early because I had placenta increta. She was taken to the NICU at the hospital next door. I only got to see she through video they setup for me. I did not get to meet and hold her until day 5. It broke my heart. The thing that bothered me most was my friends and family would tell me “you and the baby are healthy”, but to me I missed the first 5 days with her baby. When we came home I didn’t feel bonded with her. It made me very sad. She is now almost 11 months and every now and again I still think about what I missed.

  10. I had 5 children normal except the last one which was breach , upside down feet first , instead of vaginal first we know the rest, is left to imagination.

  11. Everyone is different. As the mom of a 26 weeker, I don’t really relate to this article.

    I didn’t feel cheated. My entire pregnancy was a blur of worry and bloodloss. His early birth was worrisome, but a relief. Truly, a relief.

    I didn’t and still don’t feel any guilt; that emergency csection saved both our lives. I am grateful. Humbled. Thankful I had been in the hospital when all hell broke loose.

    We had a wonderful NICU with wonderful nurses and private rooms. Hubby and I have good memories of many date nights there, spent with our son.

    We weren’t on lockdown at home, we had no health visitors once he came home, and we didn’t isolate ourselves, so I don’t share that aspect of this journey, either. Then again, my baby has no health issues from his stay.

    And I certainly wasn’t helpless. I was very proactive in my son’s care. I demanded things of the doctors that they hadn’t used or heard of before. I researched everything. I questioned everything. I gave permissions and refusals.

    The only thing I can relate to in this article is the memories triggering a bit of “something” in me. I was watching a video the other day and heard O2 desat alarms going off, the same ping-ping-ping we heard so often for three months, and my entire body become shaky and hot and anxious.

    So yes, there are scars.

    I guess I say all this because not every NICU mom feels this way. I tried to always accept that these were our particular circumstances in life right now and I clung to hope and sought out the blessing in all this.

    And NICU moms – you’re not helpless. Research! Be informed. Ask questions. You are still your
    Child’s best advocate, even if he is at the mercy of the NICU.

  12. Great article! I feel ashamed for still crying about something that worked out so well in the end. It’s two months later and I still stress over everything sound. Knowing that I’m not alone helps a bit. Thanks!

  13. I had a micro preemie, born at 26 weeks and 800grams. I can tell you that he is a very healthy and happy 2 year old. I suffered from depression and ptsd and I am still on meds to help me cope. I do however believe it becomes easier after some time has passed. I was fortunate in that we could hold him after 6 hours had passed after his birth, even though he was on cpap. I also feel that we were privelaged in that we were able to watch him grow outside the womb..something most moms will never get to experience.

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