What It’s Like Having a NICU Baby

I wrote this letter to a friend’s sister who has a baby in the NICU. I thought I’d share it in case it helps anyone else.

I’m being terribly presumptuous writing this letter, I know, and I don’t know you very well. But  I wanted to let you know some things, because I’ve been in a similar situation as you, and the worst part of it, for me, was feeling lost and alone because I wasn’t sure if anyone understood what I was going through. So I’m hoping this might offer you some comfort.

First of all: Congratulations! She’s adorable and will keep getting cuter. This is such a special moment, and even in all the worry and pain you might be experiencing, you have a little baby who will grow into an adorable kid and amazing woman.

Since every person and every birth experience is different, I can’t presume to know what you’re feeling. So at the risk of seeming self-absorbed, I’m going to tell you how I felt. When I was going through this, I wanted to know from other people that they had been through it, too, and how they felt, and to know that my feelings were normal.

My Girls’ Stories

I have two daughters, as you know, healthy as horses and cute as can be, but both of them were in the NICU. With Eliza, I ended up in the hospital two weeks early because I hadn’t been feeling her move, and I wasn’t feeling well. It turns out I’d gotten an infection, and she had also aspirated meconium. She was born with PPH, which I found out later is no joke for newborns. Her lungs and pulmonary system were compromised, and we both were pumped full of antibiotics for a week; she was on an oxygen tube for most of that week. I didn’t realize until afterward how sick she really was, thankfully, but she came through and is just fine now.

With Gillian, I went into labor at 31 weeks (I have a condition called an incompetent cervix, and how’s that for a term made up by a man?) and was on hospital bedrest for a week. After a week, I got an infection, and she was born by C-section at 32 weeks, at 4 lbs., 5 oz. I’d gotten all my steroid shots for her lung development and she was in the “scary” NICU for only two nights before she became an official feed-and-grow in the “nice” NICU. She breastfed in the first week—crazy!—and didn’t need a feeding tube after only a few days. The nurses just fed her and cuddled her until she was big enough to leave the hospital, which was 3 weeks after she was born.

Your story is different than mine. Everyone’s story is different, even with textbook births. But I hope I can offer you some comfort in commiseration. I’ll try to offer only this advice to you: your feelings and your own, and they are all OK.  Everything you’re feeling—all of it!—is yours, and it’s OK and valid and acceptable and yours.

Most of what I’m about to write refers to Eliza, since she was my first, and she was sick.

Terrified, Stressed, Lonely, Scared, Guilty, Grateful

I was terrified for her, so worried she was in pain she didn’t understand, or feeling as lonely and scared as I did. I felt horribly guilty that I’d done something wrong to bring it on. I felt stressed out that I had to manage my family’s anxiety, and make them feel better, and answer all their texts and talk to them on the phone and tell them I felt OK. (I ended up telling my sister to intercept all the messages from my mom because I couldn’t take the scared tone in her voice.) I felt exhausted, because having a baby is hard, and when I had Gillian by C-section, I was in pain, and getting the chills, and fevered, and trying to squeeze out “liquid gold” colostrum so they could get those good nutrients.

I felt devastated that both of them had their first baths by nurses, without me to help or watch. The wires were terrifying, and looked painful. I looked at the babies in the well-baby nursery, and felt bitterly cheated every time I had to get admitted to the sterile, beeping, and whirring atmosphere of what I came to think of as the scary NICU. Then I looked around the NICU and saw other babies who were in much worse condition, and felt guilty for feeling anything but grateful that my kid wasn’t that bad off. And then I felt guilty for comparing her condition. I shared tired, hopeful smiles with other parents and talked with mothers in the lactation room as we pumped breastmilk into sterilized bottles.

I felt comforted by the constant beep-beep-beep of the monitor that echoed her heartbeat, and overjoyed every time they removed one more tube or wire. I had nurses I especially loved, and couldn’t help but laugh when a night nurse shot me a “Your kid won’t STFU” look because she was crying all night. Because crying was the best. I went up one night at 3 AM, freshly pumped milk in my hand—I was wide awake and wanted to see her—and heard her shrieking through two sets of fire doors. They were removing the IV from her foot, and I’ve never heard a better sound. No baby with lungs like that could possibly have compromised lungs, right?

Most of all, I felt strong. I cried, but I mostly held it together. I didn’t have any choice. I didn’t make a conscious decision to keep it together for her; I just did. All these emotions were a constant swirl, a tornado of happy/sad/scared/comforted. And then we left the hospital, and I was deep in the weeds with a newborn, and all that that entails, so the emotions got packed away. Caring for an infant is a lot of flipping work, never mind the NICU part, and I didn’t have the time or energy to dwell on the ordeal we’d just been through.

NICU PTSD is a Thing

One of my friends that had a NICU baby always says, “The NICU was our ‘Nam.” Another friend told her husband (a combat veteran): “Imagine being in combat, only you don’t have a gun and have to let everyone else fight for you.” That’s what it’s like.

Five months after I had Eliza, we went back to the same hospital to see my sister-in-law, who had just had a boy. I stepped into the hospital, and my heart started pounding. By the time I got to the elevator, I felt dizzy. By the time we got to the labor ward, I was sweating and realized I was having a panic attack. We visited Catherine, and Dylan was in the room with her, an arm’s length away. She was fine. He was fine. He slept with her, and she breastfed him when he cried. I cried all the way home.

The next year, I went back again for my first OB checkup for Gillian, and suggested we visit the NICU ward to show off our walking, babbling toddler who’d been a resident only 14 months earlier. I walked through the first door. Walked up to the second. Looked through the window. Turned around and bolted. I wasn’t even thinking. I just ran like the devil was at my heels. Fortunately, a nurse saw me and chased after me, grabbed me and literally dragged me back. By this point, I was sobbing, and she talked me through it. “You did this. You got through this. You didn’t do this back then—you didn’t cry because you couldn’t, and you had to be strong. But you can cry now. It’s OK. And look what you have.” And she pointed to Eliza, who was blissfully unaware that Mommy had just had a nervous breakdown in the hallway.

At that moment, a guy walked in with two cups of coffee. He looked wiped out. I pointed at Eliza and said, “She was here a year ago.” And he smiled, probably one of the first smiles he’d had in a while. “I like to hear that,” he said. He carried the coffees in to his wife and sat next to his own baby. And I hugged the nurse and took Eliza home.

Every mother is a soldier for her baby, and having a NICU baby means you’re on the front lines. It means we experience the pain and shock and resonance of this for a long time after they’re giggling and fighting and losing their teeth and growing up. PTSD is a real thing. I still get palpitations when I smell the hand sanitizer they used in the NICU. It sucks. If I experienced more than one bout of sadness a year over it I’d probably go to counseling for it. But I know they’re my feelings, and it was my experience, and I don’t have to apologize or feel guilty for any of it.

Babies are Fighters

The best part, of course, is that I have Eliza and Gillian. They’re more to me than I ever dreamed they’d be. They’re totally different people from me, and different from each other. They’re people. One of my favorite lines from a TV show featured a woman looking at a pregnant woman’s belly, as she was giving birth, and she said, “I wonder who’s in there.” And now you have a lifetime to figure out who’s in there, who Ruby is. One thing you know is that she’s a fighter. All babies are. And with you being there to give her your warmth and voice and skin—because she already knows your voice!—she’ll fight even harder.

One last anecdote: before we discharged Eliza from the hospital, a neo-natal physician gave a spiel about what we needed to do when we got her home. And he started with, “She won’t remember any of this.” I believe him. She won’t remember any of it. You will—you’ll carry it forever, and you’ll get to tell her all about her dramatic and exciting entry into the world, and she’ll feel even more special and strong because of it. But all of these next few months, she won’t remember any of it. She’ll just carry with her the understanding that she’s loved, and that you want her to fight.

Sharing my story is part of how I work through this, since I would’ve loved to have had people telling me their stories when I was going through it. The worst part, for me, was the isolation and feeling like no one understood, so I hope you find some comfort in this. Take care of yourself.

Keep enjoying your little kitten! She’ll be running around and driving you crazy in no time.

elizagillian

My NICU babies, 4 1/2 and 6 years later.

 

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