The Mighty Logo

9 Things People Don't Realize You're Experiencing When Your Child Is in the NICU

The most helpful emails in health
Browse our free newsletters

Having a baby in the NICU is a stressful and sometimes traumatic experience. When my oldest daughter was born, she was immediately transferred from our tiny rural hospital to a NICU an hour away. I had lost too much blood, and my doctor wanted me to stay behind under his care. Instead, wanting to be close to my baby as soon as possible, I left the hospital with a high dose iron prescription and needing to use a wheelchair from time to time the first few days following her birth. I pumped religiously every two hours, and my husband and I took turns holding her every time we were allowed to. My bleeding episiotomy was the least of my concerns.

Every NICU parent has their own experience, but those experiences are not necessarily things people realize we go through. We reached out to the NICU parents in our community and asked, “What are things people did not realize you were doing or going through when your child was in the NICU?”

These were their responses:

1. “People do not realize how traumatic it is to meet your baby in a clear plastic box, hooked up to every machine you never wanted to see. I had two premature babies at separate times in the NICU. A 2-pound, 2-ounce boy, then six years later, a 1-pound 9-ounce girl. People don’t understand that these tiny babies are literally fighting to survive. They assume they are happy, miniature babies who need to eat, sleep and grow, then they will go home. It broke our hearts every time that was said to us.

Things change very quickly with babies this tiny — they can be doing great, then suddenly turn for the worse. There are days and sometimes weeks when there are no assurances that your baby will live through the night. There are days and sometimes weeks when you cannot hold them. The separation from your newborn is hellish. We did it as new parents, then again with two other kids at home — I honestly cannot say which was worse. As NICU parents, each time you leave [your babies], you know it could be the last. Each time the phone rings, terror rises in your throat. My babies were each in the NICU for three months. We were lucky, our babies survived, but others there did not. People don’t know that the other NICU parents are profoundly touched by those deaths. We walked into the unit with those parents, scrubbed in, shared hopeful and terrified glances, walked around the unit with the glaze of trauma upon us, just like them. I remember the names of the babies who didn’t make it out both times we were in the NICU. I still pray for them. Only another NICU parent understands the helplessness, terror, grief, and stress of having a critically ill newborn.” — Valerie K.

2. “Our son was admitted to the NICU at birth via c-section. He was transferred to a larger hospital on day three in another city. My husband and I stayed at the Ronald McDonald house next door with our toddler. To nurse my newborn, I had to walk over by myself through the whole hospital three days after having major surgery, every three hours, even overnight, as my husband had to stay with our toddler. The nurses in the NICU were shocked to learn I had just had a c-section days ago and claimed they did not know how I did it. But it is something you don’t think about. My baby needed me, and I needed him, so I did it.” — T Lee H.

3. “I didn’t get to see my son, who was born 13 weeks early, for over 24 hours because he was in the NICU and I was in ICU. I didn’t know if I would get to see him alive since I had to be put under general anesthesia for my c-section. The hardest decisions most parents never have to make for their child were demanded after being a parent for just a few days (do we give them this drug for this or not?). Being away because you have to work to pay the bills since their stay was over four months was very difficult, and the time bonding was so little. How hard it was to try and keep up with breastfeeding without having a baby there, not producing enough because of pumping only and a premature birth and the guilt of not providing enough. The feeling of complete failure when they said they had to use formula because he required more than I could produce. Words can’t describe… saving grace was finally bringing him home and he is still with us. Was torture seeing all the kids getting to go home that arrived after him, worse was knowing some parents never did get to bring theirs home. NICU life was the hardest thing ever. My heart goes out to any parent in that position!” — Natalie M.

4. “Your life stands still, and while everything around you is moving forward, you are not. [I tried] to be at two places at once, with a baby in the NICU and a 3-year-old at home who both need their mother. [I had] an overwhelming sadness to leave the hospital without my child and to not know when my child would get to come home.” — Kari C.

5. “At one point when my twins were in the NICU, my son had to be transferred to a larger hospital because he wasn’t breathing and was intubated. They weren’t sure why he wouldn’t breathe so they moved him to where a specialist could help. At that point I left my husband an hour away from our home with our son, I was at our home with our 2-year-old and had my son’s twin in another NICU an hour away from our home. So three kids in three different parts of the state, and all family lived eight hours away. We didn’t feel like a family. We were just trying to keep our head above water while feeling like we were drowning.” — Ashley T.

6. “My son was born 12 days after his due date and weighed 11 pounds, 9 ounces. He was in the NICU for four days, because of his large size, he wasn’t regulating his blood sugar properly along with a few other minor complications. What was most difficult for me is the expectation for babies in the NICU to be premature and tiny.” — Naomi S.

7. “People who have never had a child in the NICU don’t realize the immense amount of stress and how quickly things can change for babies from minute to minute. Also, it was very difficult for me to find a balance between being spending time with my NICU daughter and 2-year-old son!” — Kylie M.

8. “We needed privacy — We were coming to terms with a very unexpected diagnosis, and every day brought new diagnoses, and we needed support, but we weren’t up for ‘visiting.’” — Kate B.

9. “My son was born six weeks early and has spina bifida. After an intense emergency c-section, he was taken to the NICU and had surgery when he was 18 hours old to close the hole in his back. The hardest part for me was that my husband was the first to see him after he was born. I didn’t feel connected to him for a long time. When he was in the NICU, I could tell he would always have a special bond with his daddy — which is great! But, it was a hard thing for me to handle as I wanted to bond with my son but I couldn’t hold him for a long time. Things are better now, but it was a struggle for a long time!” — Rachel H.

Getty image by Matsuringo

Originally published: September 17, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home