There’s No Hierarchy For Pain (And Other Lessons From The NICU)

Ten weeks ago, I sat in my then three-day-old daughter’s isolation room in the NICU, sobbing to the head nurse.

In between the sobs were apologies:

“I’m sorry you have to waste your time comforting me. I don’t know what’s wrong with me.”

“I’m sorry to take you away from other patients that need you more.”

“I shouldn’t be this upset; there are a lot of other families that have it way worse than us.”

The nurse said she wanted to help, that she was worried about me. She said that no matter what the circumstances are, the NICU is a hellish experience. But I kept thinking about the tiny 23-week old baby I had seen earlier. My 9-pound, full-term baby seemed so healthy compared to him and the other preemies. Those parents had a right to feel sad and scared, but not me.

Our time in the hospital had not started out scary.

I went into labor on my due date, and the birth went perfectly according to our plan. Thirty-six hours later, we were close to checking out when I found a large amount of blood in my baby’s diaper. She was admitted to the NICU and they discovered she had a fever, indicating an infection. The neonatologist immediately ordered all kinds of tests to try to determine the cause, including a spinal tap to see if the infection was in her brain.

They sent us away while they did the tests, and I collapsed in the hallway with my husband. I didn’t understand; my daughter was perfect, she didn’t even seem sick. How could this have happened? I vacillated between denial—Did she really have a fever, or was she just warm from doing skin-to-skin?—and fear. I wasn’t even sure what to be afraid of, but when I asked the doctor if my baby would be okay, he didn’t have an answer for me. So I feared every terrible thing my brain could imagine.

On the third day in the NICU, we got the news that our baby had a bacterial infection rarely found in newborns.

Instead of staying another day or two, as we had hoped, we had to stay for eight more days while our daughter received IV antibiotics three times a day.

Hanging out in the NICU

I should have been relieved that we knew the cause of the infection and how to treat it, but all I felt was guilt that she had somehow gotten this from me during the birth, and fear about what effect, if any, this would have on her future health.

All of this, on top of extreme sleep deprivation and postpartum hormones, brought me to my breakdown in front of the nurse. My mom and husband couldn’t get through to me, but somehow that wonderful nurse convinced me to take a break from the NICU.

I retreated to the waiting room and stuffed myself with chocolate-covered pretzels, suddenly ravenous after a couple days of hardly eating. I sat there thinking about what the nurse had said about the NICU being a hellish experience for all parents.

Why was I comparing our version of hell to everyone else’s?

Then I remembered something I had read recently, in a book written by a therapist: “There’s no hierarchy for pain. Suffering shouldn’t be ranked, because pain is not a contest.”

So I tried to stop comparing. When you do that, it’s so easy to go down a rabbit hole, always finding someone else who has it worse. And just because others had it worse didn’t mean I shouldn’t feel scared and sad. Scared that my baby had gotten a potentially life-threatening infection. Sad that she was only a few days old and already had to undergo all these tests and x-rays and needles. Sad that my initial postpartum experience was not at all what I had expected. Sad that we had to stay in the hospital for what felt like forever, away from our two-year-old son.

Embracing those feelings didn’t mean I wasn’t grateful for or couldn’t see all the positive stuff. I was grateful that we caught the infection early and could treat it. Grateful we were able to stay in the hospital for the course of her treatment, which meant I could keep breastfeeding. Grateful for our incredible parents who took care of my son the whole time we were in the hospital.

Our hospital stay was also a lesson in finding the silver lining.

We got a lot of time to bond one-on-one with our new baby. The days blended together in a blur of cafeteria food, IV doses, and calls from nurses, but what stands out in my memory now are the hours I spent studying my daughter’s face while she slept peacefully on my chest. Moments like that are rare now that we’re at home with my sweet tornado of a son.

I came away with a few other lessons, too.

I learned that I can be a strong advocate for my kids.

No matter how I was feeling, when a doctor came around I pulled it together and asked the right questions, pushing until I got the information I needed. When they reported the results of a critical test to us incorrectly, I learned that doctors aren’t infallible. It shook me to think that mistakes could be made in the care of my children, but doctors are only human.

I witnessed a depth of strength in my husband that I didn’t know existed, a strength that pulled me back from the brink on several occasions. There’s no one else I’d rather be (or could stand to be) trapped in a small hospital room with for almost 24 hours a day, 11 days straight. But I learned that he has limits too, and sometimes I had to be the strong one and keep us afloat.

A few weeks after our release, we went back to the hospital to give some thank you gifts to the nurses. When we reached the long ramp leading into the NICU, I felt a familiar lump in my throat as I held back tears. And then I heard a familiar voice in my head chastising me for those emotions.

When I related this to my mom later, she asked why I had gotten emotional. I thought it was obvious—because I had bad memories of the NICU. Trying to make me feel better, she said, “Well, they should be good memories, right? Because she got better.”

She had a point. I’m so happy and relieved to have my daughter home and healthy. But my feelings were valid, too.

Being in the NICU is surreal and scary, whether you’re there for one day or a hundred.

And every day spent in the NICU is a day away from where you want to be—at home with your baby. I had to give myself permission to grieve the loss of those days I expected to spend at home, and accept that my daughter’s first two weeks were not what I had imagined. Once I did that I felt more at peace, and I could finally see the bits of good that came out of a difficult experience.

Happy girl at 2 months old

 

2 COMMENTS

  1. My son was born 7 weeks early this past September and had to be in the NICU for 3 weeks and I wouldn’t wish that experience on anyone. It was especially hard to be away from my 2 older children and feel like a failure even though I was making sure the baby received bonding time. Whether you’re there for one night or months, siblings or only child, it SUCKS.

    • That must have been incredibly hard, I’m so sorry you had to go through that. I definitely felt like I was failing my older child too. I wanted to be home with him, especially because he was struggling with us being gone so long, but I knew I needed to be in the hospital with our baby. I felt torn in half, it was so hard.

      Hope your son is doing well now!

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