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.


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


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When it Comes to Air Quality, Better is Not Good

Nov 3 UPDATE: Read the article in the Post-Gazette here: Western Pennsylvania native helped spur council conversation on air quality


In the last year, I’ve gotten more involved with working toward better air quality in Pittsburgh. Today, I joined Councilman Corey O’Connor at a post agenda specifically for this issue, one that affects every Pittsburgher. Here are the remarks I gave.

I’d like to thank Councilman O’Connor for calling this post agenda, and all of you for attending. I also want to thank the presenters who are providing us with so much context. I’m Jody Handley, and speaking as a private citizen because behind every number and statistic there’s a family like mine.

A bit about me: I grew up in Greene County. My dad went to Sto Rox High School, and my mom grew up on Corey Avenue in Braddock, the granddaughter of an Italian immigrant employed at Edgar Thompson Works. As a child, when she arrived at Braddock Elementary, she and her classmates washed the soot off their faces when they arrived at school. As a child, and when I worked at Kennywood for two summers, I didn’t question the summer sulfur smell—it was just the way cities smelled.

After graduating high school, I lived in New York City for three years, and then San Francisco for nearly 12 years. In early 2012, when our second daughter was about to turn one, my husband and I decided we’d had enough of paying out the ears for a one-bedroom apartment and flying back home twice a year to visit our families. Given the choice between several East Coast-cities: Baltimore, Washington DC, Pittsburgh—we knew Pittsburgh was the right choice. Aside from my personal history there, it has beautiful, affordable homes, a gorgeous landscape, culture and nightlife, and a growing software industry, which is my profession.

We knew we’d have to contend with losing our walkability, not to mention winter. What I didn’t know was that a week after moving in, I woke up in the middle of the night to a horrible sewage smell in our rental house on Shady Avenue; I called the landlord the next morning, but by then the smell had dissipated. It turns out the smell wasn’t coming from inside the house.

We still bought a house in Squirrel Hill South, on Landview near Minadeo. We love our yard, our house, our neighbors, but what we don’t love is the smell. During our first full summer, on cooler nights, when we’d leave the windows open for fresh air, I’d routinely wake up at 2:30 AM—always 2:30!—to close every window in the house.

After I got a new prescription for an Albuterol inhaler—something I hadn’t needed since high school—I looked deeper into the issue, and began reporting the bad air on the ACHD’s website. I reported frequently enough that someone actually called me. The problem, it turned out, was the weather… and the Clairton Coke Works. The river causes an inversion due to cooling night air, the wind blows it just right, and it settles right in Squirrel Hill, Homestead, Greenfield and Hazelwood.

It may go without saying, but the bad air is not the weather’s fault. It’s not my fault, either, or my neighbors’. When I get my 2:30 wakeup call, it’s not because the neighbors are burning wood, or using inefficient lawnmowers. It’s not rush hour at 2:30 in the morning. The only thing awake at 2:30 in the morning is US Steel. The coke works generates the bad air, and we all get to enjoy it—twelve miles away. Good god, I thought—if it’s this bad here, what’s it like in Clairton?

I got in touch with Jennifer Bails at the Breathe Project on Facebook, and it turns out she lived around the corner from me. Last spring, I attended a public hearing with the ACHD in Clairton, and it was just as I thought: US Steel is great at putting in playgrounds, but who would want to play in them?

When I ask my friends and neighbors about their experience with the bad air, and invariably got one of two responses. One: “I don’t know what you’re talking about.” They literally can’t smell it. Just this Monday I had another 2:30 AM wakeup—this time with all the windows closed—and the moment we stepped outside to walk to school that morning, my older daughter said, “Ew, Mommy, it stinks today.” My five-year-old smells it, but people who have lived here for long enough? They just don’t even notice it. Or if they do, they think it’s just the way a city smells.

Second: “Well, I remember when it was actually bad.” I remember not being able to open my windows for all the soot, shaking soot off my laundry, seeing the black clouds of smog roiling over the hill, all infused with a sense of pride in Pittsburgh’s romantic blue-collar roots. This is usually followed up by a defensive posture of Pittsburgh: we’re getting so much better, the air pollution’s not from Pittsburgh, but from Clairton or New Castle—all with the underlying message that it’s better than it used to be, and if we hang our dirty underwear out on the line, no one will come visit us.

That is madness. I love Pittsburgh. I love living here, and I love seeing the physical and cultural changes it’s undergone since my childhood. I love that Braddock is coming back from the edge of ruin. I love that STEM companies have become a major industry here, and that so many of the young people who come here for college are staying. It’s why I wanted to come back.

But we have a long way to go, and if we’re not willing to acknowledge the problem, we’re never going to change anything. Clairton will keep getting new empty playgrounds, Shenango will continue getting slapped on the wrist, and our air will keep smelling like an outhouse.

Better is not good. It’s not even just not good enough—where we are right now, it is not good. I’ve read articles quoting that we’re no longer hell with the lid off, and I heard a caller on the radio tout that we’re better than Beijing! This is our basis for comparison: Beijing and Hell! We’re better than Hell. That’s an awfully low bar. And we can, and should, expect more from ourselves. And it sounds like we do. In press, we compare ourselves to Austin and Portland and even San Francisco. But in the next short breath we’re favorably comparing ourselves to Beijing and Hell.

So why am I talking to all of you? What can you do about it? I know that the city of Pittsburgh is not Allegheny County, but it is a pretty big part of it. I’m asking you to start talking about this. Just this conversation we’re having now is a great step. So many people seem afraid to say anything bad about the steel industry, because to denigrate the steel industry is to denigrate the Steelers, and Pittsburgh’s rich history. I also love the romance of it—my great-grandfather was a mill foreman at Edgar Thompson, and my grandfather captained a tugboat on the Mon. I hear the trains go through Homestead, and watch the barges pass from my yard. It’s part of me, too. I love how Pittsburgh is growing in new directions.

We’re on our way, but we haven’t arrived. And I believe the thing that’s standing in our way is air quality. You, City Council, can enforce our existing Clean Air standards. You can help us build a city infrastructure so that we don’t have so many cars on the road—speaking as someone from the East End, I would love a train downtown—and we can end smoking in bars. That’s at least two things to start giving private citizens better choices controlling air quality.

But that doesn’t hold Clairton, and Shenango, and Edgar Thompson accountable. They are the root of the problem. They are why, some days, I don’t want my daughters playing outside in the yard. They are why it’s healthier for my girls to sit inside an air-conditioned home with the windows closed, watching TV, than it is to play Frisbee.

I do get a third response from people when I talk to them about air quality, and joke about how I’m going to become known as Crazy Stink lady. I tell them how they should register complaints on the ACHD, write emails to you folks, and Mayor Peduto, and their state legislators. The response I get back? “Good luck with that.” I think part of that comes from a perception that you don’t read your emails and don’t care what anyone has to say. I’ve found firsthand that’s not true, so thank you! But the real root of that message is that you can’t fight the industries. They have too much money, they’re too powerful, and the politicians are beholden to them. That is the most discouraging message in all of this: that I shouldn’t even bother trying, because when I moved here three years ago, I gave up control of my family’s respiratory health and signed it over to US Steel.

[Note: I’m embarrassed to say at this point, I got so choked up I couldn’t continue. So you can all enjoy my final, unsaid paragraph.]

I’m asking you to help us take that control back. We have to convince Pittsburghers that this IS a problem; that it’s worth fixing; and that we have to help fix it. Only then can we get the message to the people who can hold Clairton and Shenango accountable. Help Pittsburgh get mad! Help us take control of our own health. Help us aim higher than just better. Because better is not good.

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A Tree Lends a Hand… Branch?

Back in the 80s, Eat’n’Park, a local franchise akin to Denny’s, began airing this commercial. The holiday season is not official without the airing of this commercial during the Macy’s Parade, and thanks to YouTube, everyone can enjoy it, even if they no longer live in southwestern Pennsylvania.

I get goosebumps every time. And sometimes tears.

Have a wonderful holiday, fair readers!

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LowesHack: A Pretty Spinning Windmill

In early summer, I was obsessed with finding a pinwheel for the yard. Not a flimsy paper pinwheel, but a nice, sturdy steel one–but not one that looked overly old-timey country. Our aesthetic, after all, is more Mad Men than Little House. I drove myself crazy until I found the Kinetic Steel Wind Spinner at Lowe’s for $40, the result of a happenstance glance to the right when I usually would’ve glanced left. (The one in that link isn’t quite the same as ours, but I couldn’t find an exact match.)

It was just what I wanted: six feet tall, two spinning wheels, and a spinning pole that would allow the pinwheel to rotate as well as spin. Groovy! Only problem: it was all black matte steel, and virtually invisible against our wooded hillside.

Fortunately, I’d just been spray painting all of our patio furniture, and had a brainwave: I could paint the interior white, and the exterior glossy red, for a nice double-colored effect when the wind blows. It came out perfectly: a barber-shop-like spinning flower in our backyard, placed in full view of our living room. Our neighbor liked it so much, she went and bought her own, painted it blue and white, and put it just across the fence. (It’s barely visible in the video below.)

The best part? Now that the leaves have fallen and landscape has gone the brown of Pittsburgh winter, we can enjoy a wildly spinning riot of red and white flashing against the landscape every time the November wind gusts up from the river. And I can’t wait to see how it looks in a full snow.

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Prototyping the Kitchen, Part II

A few weeks ago, we cut a hole in the wall. We do that a lot. Last time we did it, it was to reopen a hole in our front hall–one that was in the original house. I’ll post about that some day. Then, of course, we cut a giant hole in our living room. And there was the time we cut about six inches from the dividing wall to our bar area, known as Kitchen Island, Prototype #1.

Usually it goes like this:

“So I was thinking… maybe we could cut the hole in the wall today.”

Then I call my dad, and say, “Dad, we’re going to cut a hole in the wall today.”

And then he brings power tools and old clothes, and my mom and I take the kids to a craft store, and my husband and dad make everything very, very dusty.

And we go from this:

Note how the recessed lighting actually bounces off the whole thing and makes it glow. Glow, I tell you!

To this:

Tarps are important when drywall's involved.

To this.

No, it's not load-bearing. They checked.

That was a few weeks ago. We’ve been making some trips to IKEA in the meantime, spec’ing out cabinets for underneath the island, talking about configurations. But I’m someone who actually has to see a design to understand it, so this weekend, with the help of a few wood planks, clamps, and tablecloths, we came up with a reasonable facsimile of what our new semi-wraparound island will look like.

It'll be shorter from wall to end, but wider. The shelf will be lit from underneath, and hide unattractive things like the iphone charger and butter dish.

Of course, the IKEA cabinets that will best match our gray steel cabinetry is the Akurum Abstrakt line in glossy white, which, for IKEA, is expensive. For anywhere else, I think it’s about right. Plus, with a butcher block top, David can cut out the compost hole (I love a compost hole, and ours uses a steam table container, set right into the countertop), and we can get a pull-out trash drawer.

Of course, we’ll have to cut the remainder of the dividing wall out, which will involve some rewiring and minor ductwork. They’ve promised me it’s easy. I hope so, because what we really want is to have a line of outlets on TOP of the counter, conference-room-style.

The opposite side is a different story. The cabinets will be part of the living area decor, so glossy white will look far too sterile. I’m hoping we can either get an accent door from IKEA in lime green or turquoise, to match the colors in our mural, or even get unpainted cabinets and go crazy with it ourselves–preferably with high-gloss, as well, to repeat the steel cabinetry look.

Look at that hole in the wall!

Ideally, the butcher block top would extend out past the hole into the dining area, which would allow room for a fourth barstool (we’d fit three along the side) and really complete the flow of the kitchen as the heart of the house. Of course, that means we’d be cutting out THAT wall, too, and also moving the HVAC.

And we’d like to have the bulk of it done by Thanksgiving, when we’ll be hosting my sister and her family. I think we’re gonna need some more dropcloths.

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