Can I still be sad if my baby is the healthiest in the NICU?

“Oh, she looks great!” my friend exclaims, “she looks so big and healthy!” I hear the surprise in her voice. I smile, and nod in agreement. This is the response I get whenever I share a picture of my daughter. 

I understand these surprised reactions and accept that they come from a place of kindness. My daughter spent 8 weeks in the NICU and I think the common assumption of NICU babies is that they should be teeny tiny and covered in various tubes and wires. I know they mean well, it is our natural response as humans to say something positive in difficult situations.

Oftentimes we are expected to look on the bright side instead of meeting ourselves where we are.

The surprise comes because my baby wasn’t a preemie, she was born full-term, and came in at a healthy 8 pounds 14 oz. This realization would often come with confused looks and more questions about her hospitalization. I would smile and cycle through my well-worn responses, “No, she wasn’t early,” “She needs surgery to fix her jaw,” “she can’t breath or eat on her own,” “she’ll be OK,” and “no, we didn’t know ahead of time.” 

It is a strange sort of limbo when you have a sick baby that doesn’t look sick. I struggled with how I felt because I knew she was sick, I mean she couldn’t leave the hospital but I sometimes felt like I had to convince others of this. Lucy didn’t fit the mold people expected when they thought of a baby in the NICU. She looked like a normal, run of the mill newborn except for one thing—her very small chin. Her chubby cheeks hung like jowls, her top lip jutting out over her bottom while her chin and neck were almost perfectly aligned. It could be easy to overlook, all babies come out a little swollen, right? Due to her “normal” appearance, early on, I found myself having to really explain her illness to people. “But she looks healthy,” they’d reply in earnest. 

The early days in the NICU brought me nothing but fear and uncertainty. I cried everyday struggling with how to be her mother when we were together and struggling when we were apart. There were no answers, just questions and a lot of waiting. We didn’t know what was wrong, what would happen to her or when she’d be able to come home. I was sad, disappointed and often cried to my husband.

Our families and friends were wonderful. My husband and I were overwhelmed by the outpouring of love and support. But answering the kind-hearted questions that came along with the genuine concern brought me nothing but anxiety. I fell apart when asked how she was, what was wrong and especially when acquaintances would see us out and ask, “where’s the baby?” I dreaded situations where I knew I’d see people and have to talk about it. The most difficult question for me to field was when people asked how I was doing. I hated this question. I was bad, terrible, miserable, but my common response was, “I’m OK,” even as I tried to hold back tears. How was I supposed to be? I didn’t want to unload all my hurt on these kind souls so I found myself trying to keep it together to not make others uncomfortable. I tried to curb my own emotions so that no one would find out how sad I really was. 

After a few weeks of multiple tests, scans and scopes, Lucy’s care team finally confirmed her diagnosis. She suffered from Pierre Robin sequence and micrognathia. Micrognathia is characterized by a small chin, issues breathing and eating due to a partially blocked airway and a cleft in the soft palate. Lucy needed oxygen 24/7 to help her breathe and took all her food through a tube in her nose. She would require three surgeries over her first year of life to correct the cranio-facial abnormalities. While this was hard to hear, we took comfort in the fact that we had a plan and a solution. This surgery didn’t have a percentage success rate or a chance for possible improvement. It was a fix. This will fix the problem, she will get better and she will come home. 

Related: Dear mama sitting in the NICU: Sometimes you’ll fall apart and that’s OK

As reassuring as the news was, it only added to my complicated emotional state. It was easy to compare Lucy to the other babies in the NICU. Comparably, she seemed pretty healthy. She’d have no long-term effects, she was growing and meeting milestones. Now, not only did she not look that sick but she also didn’t seem as sick. I thought to myself, My daughter is sick, But not that sick. I struggled with allowing myself to feel sad. Constantly reminding myself that I should be grateful it wasn’t worse. 

Once I knew that she was going to be OK and that all signs pointed toward a healthy, normal life, I felt like I shouldn’t be sad anymore. As if it was something I could just shrug off like an itchy sweater. The “easy” fix coupled with the responses of “she looks so healthy!” confused me. I didn’t know how to rectify my feelings of despair and sadness with all the good news I was offered. 

Oftentimes we are expected to look on the bright side instead of meeting ourselves where we are. I was so heartbroken that my baby had to go through this even though I knew I would eventually take my baby home and she would lead a normal life. 

Related: I’m a NICU nurse, and here’s what I tell parents about how to care for a NICU baby

Early on in our NICU stay one of the nurses asked me how I was. I began to cry, and she recommended I meet with the NICU psychologist. “This is a traumatic experience,” the psychologist told me. “Thankfully Lucy won’t remember this but you will. It’s important for you to process these feelings.” 

I found my meetings with the psychologist extremely helpful and the acknowledgment that this was a trauma stuck with me. I rolled this phrase over in my brain daily. Until this point, I didn’t think of this experience as traumatic for me. Even though I knew this was supposed to validate my emotions; I still found myself reaching for the positives in an effort to dismiss my feelings. 

I wrestled with these conflicting thoughts daily—I’m traumatized and heartbroken my daughter is going through this and Lucy will eventually be OK and not remember any of this. 

Lucy was discharged after 8 weeks in the hospital. Four months later and I still struggle with these two modes of thinking. She’s OK, healthy and hitting her milestones but Lucy’s journey isn’t over. She still has one more surgery to close the cleft in her soft palate. With time, the needle on my scale of emotions has moved closer to genuine gratefulness. But the feelings of fear and sadness have never left me. I still feel a pit in my stomach and my heart races when I have to go through the whole explanation for people.

I had to grieve my expectations for Lucy’s first year because the reality was very different from what I had in mind. But that’s OK, I tell myself. I can be disappointed about that but grateful at the same time. That is, at least I’m trying. When I think about how much Lucy has overcome in her short life, I again am moved to tears but this time they are happy tears.