What I Needed Most as a Preemie Parent

“Hi, there. Are you Dane’s Mom? I’m sorry to interrupt you”

Interrupt me? I’m just sitting here… staring at a clear box with buttons and tubes everywhere. Of course, my baby is in there, but I can’t wrap my mind around that just yet. I keep trying, but I just can’t. I sniff away the sadness I’m feeling, put a big smile on my face, and turn to look at the voice.

A lady I have never met before introduces herself as the NICU Family Support Specialist that works for the hospital. She quietly and sweetly welcomes me to the family and hands me some pieces of paper. She explains her purpose here, and sympathetically touches my shoulder as she leaves. I watch as she makes the rounds through the big and dark room, wishing I had listened harder to what she was saying. Some of the parents happily chat with her, giving her updates about their baby’s weight gain last night or talking about getting transferred the lower level NICU soon.

Watching her, I notice something strange and unfamiliar to me. She’s so comfortable in this place. Surrounded by babies who are too little or too sick to be anywhere but here. She moves quietly and peacefully from baby to baby, happily chatting with nurses as she goes. Since we’re in the front of the NICU, she passes by me again with a smile before she disappears around the corner.

Shaking away the confusion over how normal she feels here, I finally take the time to look at the papers she gave me. There’s a reminder of the NICU admission classes this week for new to the NICU parents, and a monthly calendar listing various family activities. I glaze over the calendar and set it down after looking again at the dates and times for the admission class. Maybe we’ll go this time.

I look back at the giant box beside me. Inside, my baby is turned on his tummy, his tiny spine quickly moving up and down as he breathes. His PICC line is sticking out from his left arm, and I count the other IV medications he has on his pole. While he did really well soon after he was born, he’s requiring more breathing support as each day passes. I shouldn’t be surprised, right? This is what happens when a baby is born too soon.

It should be said that, as a former nurse, I objectively find this place to be professional and amazing. Coming from that perspective, I’ve tried to learn more as they talk and do cares. Some say to me that it’s because I’m a good mom. Right now though, I don’t think like that. I think that it’s because I’m a good nurse. Of course I’ll know my patient’s latest numbers and turn schedule. Of course I do everything besides pricking his fragile skin. This is what I’m supposed to do. There’s been some joking that when we go home, I should come back here and work, and I just smile and laugh. I get they’re trying to be sweet, but this patient is my sole responsibility. I’m not trying to impress anyone.

But, if I think too hard about connecting with my son better as a nurse than as his mom, I dig myself deeper into that guilt pit.

As I head to “The Nest” in the back of the NICU wing of the hospital, I pass by a number of rooms filled with happy families. I’m told these are the “rooming-in” rooms. These babies are just about ready to go home. I try not to look to much since it hurts. We’re nowhere near this stage. I hike my breast pump tote higher on my shoulder and move on.

Pumping isn’t easy either. But that seems to be a theme here. I’m so easily falling prey to feeling bad for myself all of the time these days. My lactation consultant says to think of Dane while I pump. I have pictures and burp cloths that smell like him, and I wish and hope and pray and pump. Yet, for all of that, at the end, I’m left with a combined total of barely an ounce. I know that I can get away with this for a while, but that’s only because my baby isn’t on breast milk yet. He’s receiving his nutrition from a skilled laboratory that specifically tailors each meal to his exact needs. Someday I know that I’ll get to give him this milk. And that’s an amazing thought. I put a sticker with Dane’s label and medication number on the side of the bottle and drop it off at the nurses’ station. I glance at the yellow blanket covering my baby’s plastic home and turn to collect my coat and bags.

Again, I leave. Again, I cry.

—

By the time I feel a little comfortable here, it’s been weeks. Eventually, washing my hands at the scrub station becomes second nature. I check our little mailbox to see the news or potential crafts, and then I head to Dane’s side. He’s intubated now, and I sigh as I see again that he lost weight. The doctors meet with me and go over the case, showing me X-rays and EKG images. It’s familiar because of school, but it stings to see him getting sicker. “One day at a time.” And, “The NICU is a roller coaster ride,” are being repeated to me over and over. “You’re so tough!” and “I know this is hard,” are things I hear from people at home. These don’t feel comforting to me now. I wish they did. But every time I hear one said again, I know that it’s how it looks to those on the outside. Many have stopped calling or texting since life has continued on, and I’m now living in the Ronald McDonald House. My husband comes up when he has days off, but being over 90 miles away makes the time we can be together mainly about catching up on sleep that we’ve been losing. I feel so very alone at this point, and I cry in the shower most days.

During the evening shift change one day, as I sit on a couch outside the NICU, I watch as a lady gives a tour of the hospital to her labor class. The crowd behind her looks happy and very pregnant, and they chatter while they look around. I continue to flip absently through a magazine while the guide points out the labor and delivery unit, and eventually points out the door to the level three NICU. She’s very matter of fact in her description, and tells them about how if their babies need any help after delivery, the hospital is well staffed and equipped with the NICU directly above the place they would deliver. It’s quiet among the group, and there’s some murmuring. But then, a lady pipes up loudly enough for all to hear, “I can’t imagine what it’s like in there. Are there, like, babies dying? Because I’m not touring that if you’re taking us there. That’s so morbid.”

I set down my magazine loudly as I quickly and angrily get up. The group turns and looks at me as I storm past them on my way up the stairs. My “Preemie Parent” name sticker is obvious enough on my shirt, and by the whispering, I’m sure they see it. Shift change is barely done, but I figure they’re probably done with report. I huff as I’m let into the NICU and try not to cry as I, once again, scrub in. I hear the cries of teeny babies and the alarms dinging around the room. A nurse hustles by with a chipper, “Hey, Jenn!” I smile and return her greeting while I go to sit by Dane.

I sit here, thinking hard about what just happened. Of course they didn’t know. Of course it’s a scary thought. Of course nobody wants to tour a place when their world is currently so rosy and pink. I didn’t when I was pregnant! I didn’t know what happened behind these doors. In fact, I didn’t even think about the NICU until it came up that fateful day that brought us here.

She didn’t know. She wasn’t being unkind. Ignorance over this place doesn’t make her a terrible person. I guess she was a little insensitive, but I know I’m not perfect there, so I can’t judge her for that. I stare at my tiny boy and smile while he pulls on his tubes and cords. If only that lady knew what she was missing, she’d quickly change her tune. These babies are fighters and full of inspiration. They’re stronger than so many out there, and they teach without speaking. I quickly decide to forgive her and move on. It’s not her fault her pregnancy has gone so beautifully. It’s not her fault that she doesn’t know what it’s like to give birth to the kind of heroic baby I did.

—

Time goes by pretty quickly here once it feels routine.

Eventually, I notice the family in the corner across from Dane’s bed. Because of privacy rules, I try not to look or stare, but in this big open room it’s hard to not notice things. The baby boy’s birthday is only days before Dane’s, and they often seem to trigger each other with their alarms. Today, I notice his mom. As far as I can tell, she spends time there as much as I do, and while I don’t know her, I feel like we’re friends. Every once in a while, we share glances or smiles, knowing the other is having a tough day. But we don’t really talk until we both attend our first “activity night” with the NICU Family Support Specialist.

Sitting in a conference room surrounded by other parents and lots of fleece ready to be tied into blankets, I make my first real connection with another preemie parent. It gives me wings, and suddenly we’re talking about our boys and their fights. The Specialist smiles and encourages us to keep talking as the night draws to a close. We quickly discover that we’re in different halls at the house, and we exchange numbers. Suddenly, she became an ally.

The nurses here are amazing, and I’ve quickly grown to love them like family. But nothing compares to this new friendship and the courage it gives me to make new ones with other parents. If I only knew sooner how much I needed a friend and how much talking with someone would help, I would have done so much sooner.

I smile as I step into the security van to take me back to my room. I can do this. I could always do this. But now, I have somebody like her to do it with.

—

Dane spent a total of 12 weeks in the NICU. We made lifelong friends and the day we left was bittersweet. While I would have done anything to spare my child the terror of being born too soon, I believe God picked us for this for a reason. I wouldn’t have many of the friends I have today if it weren’t for the experience we had in the NICU.

To anyone reading this that is still in the hospital, reach out. Reach out even when you don’t feel like it. Reach out for your own sake, and reach out for someone else’s.