20 of the Hardest Things About Being a NICU Parent

Being a NICU parent can be brutal. Babies end up in the neonatal intensive care unit (NICU) for a variety of reasons, but most stays follow some sort of trauma like a premature birth or complications during birth.

When I gave birth to my oldest daughter, I wanted to hold her, but instead they whisked her from my arms and called an ambulance. She was transferred to another hospital immediately after her birth due to complications during delivery, leaving me behind. I begged my doctor to transfer me, too, but he refused, insisting I was too weak and it was in my best interested to stay in our small-town hospital and receive a blood transfusion before I could be discharged.

I felt desperate and helpless, so I discharged myself, perhaps too early, with only a high prescription of iron tablets. I needed to be with my baby.

I don’t believe you can ever forget the sounds, smells and sights of the NICU. It’s so incredibly hard, no matter how many days you spend there.

With September being NICU Awareness month, we reached out to our Mighty parents. We wanted them to share their experiences to show the hard reality of the NICU and others can empathize with moms. We also want new parents going through this know what to expect, and to know they are not alone in their feelings and experiences.

We asked, “What is one of the hardest things about being a NICU parent?”

These were their responses:

1. “The feeling of being helpless.” — Paula G.

2. “Not being able to hold your baby.” — Cathy L.

3. “Depression is real. No one says, ‘Congratulations.’ It’s always, ‘I’m sorry.’ People wouldn’t come up to visit because it was too tough to see.” — Nicole W.

4. “One of the hardest things about being a NICU parent is having a family at home. You’re constantly choosing between spending time with your kids at home or going to the NICU. Especially when one of your kids just started school and they need your attention and time just as much as your kid in the NICU but in different ways.” — Madelyn R.

5. “I was put in a [post-delivery] room with another mother… boy, that was extremely hard because she got to bring her baby to the room. I was moved the next day.” — Angie K.

6. “That drive home from the hospital with an empty infant carrier sitting in the backseat.” — Corey F.

7. “My triplets were born so tiny and fragile, so strong and resilient. The hardest thing about being a NICU parent was watching them struggle with the inevitable ups and downs that come with an extended stay in the NICU. Having multiples, one day might be good for one but awful for another. Such an extreme roller coaster ride of emotion.” — Amy F.

8. “Although not the hardest part of being in the NICU, one difficult part was family or friends not understanding what we were going through. Some even judged me for following doctors’ orders and not allowing sick people to be around my son for the first two years of his life… missing holidays, parties, going to public places because you can’t risk exposing your child to life-threatening germs. We lived in isolation, and it did affect some of our relationships.” — Lizzy D.

 

9. “Living over an hour away from the NICU with three other children at home. Seeing your babies suffer and not being able to hold them. Recovering from surgery with swollen feet, with an overnight bag and breast pump in tow. Sitting in an office chair to hold them for hours at a time because there were no more recliners available.” — Meghan A.

10. “Knowing your kid was the sickest one in the NICU.” — Vanessa V.

11. “My daughter was nine days overdue. She was a huge NICU baby who other than all the cords and tubes didn’t look like she should be there. All the tiny little preemie babies looked like they needed the care [and] my daughter was a healthy-term baby, but so much went wrong and we nearly lost her. [I grieved] being discharged and going home to an empty nursery.” — Madison S.

12. “My daughter was in the NICU for the first 43 days of her life. Hardest thing was leaving every day not knowing when we would be able to bring her home.” — Grace B.

13. “My daughter spent 194 days in NICU after birth. Hardest days of my life thinking it would never end, having your body not ready to produce milk yet, but you desperately pump every two hours hoping for enough to feed your preemie, all while trying to keep your life together on the outside of the NICU walls, seeing precious little ones cling to life in tiny little incubators, trying to be happy for others who give birth to healthy children instead of feeling jealousy. And a very hard part is watching the pain and heartache come from other parents as they lose their sweet babies. Ugh.” — Margaret V.

14. “The reality that they may not come home and then the utter despair when you realize they are not coming home. The heartbreak when you leave the hospital and your baby never does.” — Hannah S.

15. “Being stuck in a different hospital for three days right after he was born [because of a] c-section before I could see him.” — Catherine F.

16. “Feeling helpless, post-traumatic stress disorder, not wanting to leave your child for severe post-partum depression help, and most of all, having most of the ‘firsts’ be in a hospital, hooked to wires. My daughter didn’t feel wind, sun, etc. for two months before she was released.” — Erika E.

17. “Total lack of understanding from society. If you complain, you are an ungrateful whiner. If you don’t, then everything is great and you don’t need support.” — Cheryl S.

18. “Being scared of some health problems arising, seeing him be hooked up to multiple tubes and monitors, but two things in particular were the hardest for me. One, having to leave him every night, we lived an hour away and every day we drove in and would go back home in the evening. Saying goodbye each day broke me apart all over again. The second thing would be watching him stop breathing. Any NICU parent knows that look, and no parent should have to. Unfortunately, preemie babies [often] don’t know how to breathe on their own and have to be reminded sometimes. So while he would eat or if his head was tipped too far down, he would forget to breathe, a monitor would sound, we would have to tap him to remind him, and another five days would be added on to him not coming home. ” — Melody P

19. “The hardest thing for me was the unknown of what may happen in the next minute, hour or day. To stare at the beautiful baby you were just carrying and trying to conceive how this could happen and not blame yourself even though you did nothing wrong. Then once you finally are in the all clear and trying not to worry about everything that could make your baby sick. ” — Jennifer C.

20. “Hardest thing is knowing that this baby might have issues with bonding. Knowing there was very little you could do to prevent it. Knowing that your baby might not make it. [That] skin to skin contact was almost impossible.” — Heidi G.

Was your baby in the NICU? What was the hardest thing for you? Let us know in the comments.

Thinkstock image by Ondrooo