I had my baby at just over 30 weeks. Early, but not quite the terrible omen that it would have been a few decades ago. NICU (Neonatal Intensive Care Unit) medicine has come a long way, and those advancements have meant better survival rates for preterm infants. Of course, I didn’t know that at the time. All I knew was that I was confused, scared, and felt even less prepared to be a parent. While roughly 10% of births are premature in the U.S. - with rates especially high amongst women of color - the experience is barely acknowledged. Despite the overt violence that accompanies childbirth, we’re meant to believe that it is a seamless experience for all - one full of terrible beauty, that's over relatively quickly.

Of course, birthing parents know this is not the case. The truth hits harder for those of us who suddenly realize that we can’t hold our babies right away, or take them home till months later. NICU stays are deeply traumatic for the family, and it’s an experience that unfortunately remains unclear to outsiders. This piece is meant to make clearer some aspects of the NICU experience, both for expecting parents and those who have found themselves unwillingly thrust into this frightening reality. 

Planning Ahead

If it’s still early in your pregnancy, please look into giving birth at a hospital with a level 4 NICU. There are different types of NICUs, but a level 4 offers the highest level of round-the-clock treatment for vulnerable infants. This is a helpful guide to the different NICU levels, and I would recommend discussing with your doctor early on - especially if you’re experiencing complications. While the medical team delivering your baby can always initiate a transfer to a hospital with more robust services after the fact, I would definitely recommend giving birth in one from the start.

Protecting Your Peace

The longer a NICU stay will be, the more taxing it is for the family. The constant beeping of monitors, the feeding schedules, learning new medical terms; it’s all incredibly overwhelming. Things can be especially hard if the birthing parent is also recovering from pregnancy-related health issues. Trying to recover while simultaneously watching your child learn to function in the world without the readying mechanisms of the womb isn’t something you can ever be ready for. I remember being both heartbroken and awestruck by the realization that my baby was struggling and fighting to learn how to do things I was doing on her behalf - breathing, eating, relieving herself. I understood that this was what was happening in theory, but seeing an intubated baby struggle mightily to learn how to do all those things on her own was painful, and, in an odd way, inspiring.

“In the midst of my fear, I was learning how the human body worked from point zero, and few experiences are as raw or as devastating.”

So, the first thing to do when you’re flung into the NICU journey is to take care of yourself. It can be hard to do so when you’re wracked with guilt, but you can and should rely on the fact that your baby is under the supervision of a team of doctors and nurses. Your job in the meantime is to prioritize your mental and physical health, because your baby will need you more and more in the coming days. Once you’re able, reach out to a mental health professional if you don’t already have one, preferably someone focused on maternal health and birth trauma. If you don’t know where to start, asking your obstetrician is a good place to start.

I should also note that one thing that saved me during those early days in the NICU was journaling. A social worker gave me a journal custom made for the NICU journey, and I found it helpful to keep track of every milestone - or setback - we were experiencing. Whether it was how many grams my daughter gained in one night, or the first book I read to her, it helped to have a space to write things down, and reflect on how I felt later.

The NICU’s Secret Weapon(s)

I’m eternally grateful for two things: NICU nurses and social workers. 

I didn’t realize this, but social workers act as a bridge between whatever happens in the maternity ward and the NICU. As I was slowly recovering in one part of the hospital, social workers would visit me and my spouse, listening to our concerns, and helping us problem-solve. A social worker found us a temporary residence closer to the hospital through a charity, to make it easier to visit and care for our baby. She also helped us fill out the paperwork with my employer’s HR office for parental leave, and later connected us with the Early Intervention program in our state to help find care for our baby when she was ready to go home. 

The NICU’s medical team are a godsend, especially the nurses. If you’re staying at a level 3 or 4 NICU, you may be meeting with other professionals as well; namely occupational therapists (or OTs). Comedian and actor Rachel Bloom  said in her latest comedy special that the NICU was like “a fucked up spa for babies,” and a “bootcamp” for new parents. That’s an apt description. While I was slowly recovering, I learned everything I could from the nurses on how to care for my baby. If you leave this article with one piece of advice, it’s this: don’t be shy about asking questions. For example, how do I safely change the diaper of someone so tiny and frail? Is the feeding tube inserted properly, or is it making my baby uncomfortable? How do I give her a bath? Feeding a preemie alone became its own mini ordeal - especially once they’re ready to bottle feed - but I constantly asked the nurses and OTs for advice, and that eventually set me up for success when we were ready to go home. 

Also: leaving your baby at the end of the day can be excruciating. One thing that helped calm my nerves tremendously was that I knew I could call the NICU at any time for updates. The nights were always difficult for me, but it was reassuring to be able to call at 1am or 2am, and talk to the night nurse for a few minutes to make sure that my baby was doing alright. 

Bonding with Baby

Not being able to hold my daughter for weeks made it difficult for me to envision bonding with her. To make matters worse, I was too sick to produce breast milk and we had to rely on donor milk for feedings, which only added to my feelings of helplessness and failure. 

However, I was encouraged by the NICU’s medical team to start reading to my daughter, even when she was still in the isolette (incubator). I was skeptical, but they assured me that hearing my voice would help her, and they were right. Two years later, reading remains my daughter's favorite activity, and she’s very responsive to my voice. Another thing we learned to do early on in the NICU was to play calming music for our baby, and that seemed to help tremendously. It was a way of speaking to her and sharing beloved songs from our own childhoods, and slowly the seeds of our parent-child relationship were being planted. 

Staying Informed

The NICU is also where you end up learning a tremendous amount about things like bradycardia episodes (where your baby will have trouble breathing, and needs to be stimulated to breathe properly), CPAP machines, caffeine supplements, and so on. Each beep of the monitor induced a low level of horror into my system, but learning more about what was happening helped me feel empowered, and I could better advocate for my child. 

Again, your baby’s medical team is an excellent resource. But, I also found it helpful for me to read about prematurity and parenting. As the days passed, I found myself increasingly anxious about the day we’d be discharged, and not having a medical team to rely on if something happened. During the long hours spent at the NICU, I read Preemies, and other run of the mill parenting books I didn’t get a chance to read before giving birth. It depends on your own threshold - some parents find reading all the scary things that can happen during a NICU stay overwhelming, others find it helpful to be prepared. For me, I found a middle ground approach to work best. I’d read the basics, but skip the chapters covering surgeries or procedures my daughter wasn’t going to do. This tempered my own sense of overwhelm and anxiety, while giving me just enough information to be able to ask the right questions right before discharge.

Taking Your Baby Home

As the weeks pass and your baby gets stronger, you’ll hear more about the day they’re ready to "graduate" from the NICU. This entails 5 days without a bradycardia episode, and passing the car seat test. Basically, you bring the car seat to the NICU, and as your baby remains hooked up to the monitor, they’re monitored for 90 mins to ensure that they’re able to breathe properly. If they pass, then you’re ready to be discharged the next day.

I was excited to bring my baby home. But, after a long NICU stay, you start to feel deficient compared to the nurses and doctors. One of the OT therapists recommended that I reach out to Hand to Hold, an excellent organization that offers mentoring with other parents of recent NICU babies to help walk you through the experience and its challenges. This - in conjunction with the NICU team - helped prepare me for bringing my infant daughter home. And I encourage all parents of NICU babies to reach out and find a mentor. While I knew people back home with children, no one really understood what it meant to have a premature baby. Asking someone who's been through a similar experience simple questions about the best swaddlers or formulas helps tremendously.

One last thing about the NICU experience: closer to the date of discharge, you may be asked to learn infant CPR from one of the lead coordinators. Let’s just say the presentation left something to be desired, and it scared the living daylights out of me. It felt rushed, and the little dolls with their wan, slack open mouths looked like something out of a bad horror movie. Infant CPR is definitely an important skill to learn, but I’d encourage you to look into more in-depth training and certification programs offered by the American Red Cross. These classes will give you the opportunity to learn from an experienced professional, and practice under their guidance.

Afterlives

There’s a saying with kids - “the days are long, but the years are short.” This is especially true of the NICU. Every day and hour was excruciating. But, like all things in life, it passed. I still deal with the after shocks of birth trauma, but it’s become less sharp with time. My daughter is now a rambunctious, curious toddler, and seeing the world through her eyes has been another miraculous part of this journey. We still see her NICU specialists for periodic follow-ups, and that chapter isn’t entirely over. In all cases, we’ve learned the importance of marking each milestone with boundless joy. We made it, as many other parents before us, and you will, too.