Why the Design of a NICU Matters

When M was in the NICU, a nurse told us that the hospital was planning a new building to house a joint children’s hospital and NICU. I was surprised because our NICU underwent a renovation not that many years ago. It’s beautiful, cheerful, and functional. I was also a little sad to think that I won’t always be able to take the kids back to their first home. I know that sounds ridiculous–of course the building won’t stay the same! After J was born, I wasn’t sure I could ever visit the NICU again, and then after we spent another two months there with M, I was sure I’d never be able to really leave it behind. It was the physical space where I celebrated so many firsts with the kids: first bath, first diaper change, first time to hold them. It’s where I learned to breastfeed. It’s where I spent hours upon hours sitting beside their glass boxes, waiting for them to grow and come home to me.

Our NICU was fantastic. Not perfect, but fantastic. I have so many glowing opinions of the doctors and nurses, of their capabilities, of all the wonderful work they do there. However, the more I learn about other NICUs, the more I realize that a serious weakness in ours was in how its space is used. It is a city hospital meant to house many babies. The space is maximized to handle babies from across the region. Our babies had bedsides in almost every nook and cranny of the NICU, so I can offer commentary on the upsides and downsides of just about every spot. M moved so many times I lost count.

I’ve heard of other hospitals where the bedsides are private. Where parents can spend the night on cots next to their baby. Where mothers can breastfeed and sing to their babies without ten other sets of parents in the room overhearing. I wonder how that would have changed our NICU journey. I had a terrible time bonding with J, and for a while, I thought it was me. Only after my experience with M, did I forgive myself a little. How can a mother bond with her baby when she’s never alone? Many days, in order to hold my baby skin-to-skin, I had to call ahead to warn the nurse that I was on my way to visit and wanted to do kangaroo care. Assuming all went as planned and we were present at a time when the nurse could get our baby out of the isolette for us, she still had to find and set up curtains–which sometimes were unavailable because they were needed at other bedsides. Even with the curtains for privacy, I could still hear people shuffling around, doctors and nurses and respiratory therapists and other parents. I could hear beeping and dinging from bedsides all around. There was very little privacy and even less peace.

That is no way to spend your first months with your baby.

There was one spot in particular in the NICU that we hated. We had been basking in the relative peace and quiet of a spot we enjoyed on one side of the hallway, when we showed up one day, and our baby wasn’t there. M had been moved, and no one had told us. Again. So, we asked a nurse, and she directed us across the hall. And there in a spot barely big enough to accommodate an isolette was M. There wasn’t room for both my husband and me to sit next to her bedside. When I did kangaroo care, we had to put the curtains up into the walkway so that people tripped on them every time they tried to squeeze past. We heard every conversation from all of the other five bedsides shoved into the corner with us. We couldn’t help it. My husband and I grumbled and complained to each other. We must have had such sour expressions on our faces that the neonatologist who had been present at M’s delivery laughed and asked if we were enjoying our new spot. “Not at all,” was the answer.

Another area we despised was intended for the babies in the weeks before they went home. Six babies were to a room. Busy nurses often bounced between the rooms, leaving it woefully understaffed in their absence. Sometimes well-baby nurses with the best intentions were sent to cover for a shortage of NICU nurses on that floor, but their care was never as skilled as the NICU nurses. Our babies were not “well babies” and still deserved specialized treatment. With six bassinets, the room wasn’t overcrowded, but during times when the NICU was at capacity, babies in isolettes were moved into the room. During one of those times, we ended up in the middle of a row of them, and we were practically at other babies’ bedsides. Talk about HIPPA violations! We couldn’t help but know everything about our neighbors. And I’m sure they knew much more about us than I would have liked.

That’s the spot where I breastfed M for the first time. (And where I shot milk across the room with J, another blog post unto itself). Not ideal at all.

Even though there was no privacy, it was so hard to meet other families in the NICU. We were all scared of HIPPA violations, so we tried to pretend we didn’t hear and see everything that happened two feet from us. Thank goodness for the parents’ meetings twice a month so that we could sometimes acquaint ourselves with some of these faces we passed everyday. How much better would it have been for us emotionally to have shared a small room with just one or two other families? How much quieter? How much more private? What would it have felt like to return to the same location day after day, week after week, month after month, instead of bouncing around the NICU? There was always a new place with a different set of nurses and a changing group of babies. It had an odd way of putting us on edge, just another way for us to feel out-of-sorts, confused, anxious during an already phenomenally stressful time.

So, as sad as it will be for me to one day say goodbye to the space that housed my babies, I think there must be a better way. I am sure that such a sophisticated NICU could divide its space to better accommodate families. And it does matter. I know a hospital must be designed to provide healthcare in the most efficient way to patients, but an intensive care built for babies must also feel peaceful, private, and comfortable too. Because it will be the place where mothers and fathers learn to care for their babies. A place where babies live for months on end without their parents. A place that will be a home for these babies as they wait for their day to leave.

I hope that whenever the new NICU is built these sorts of concerns are taken into consideration in the planning of it. I would be glad to know all those families coming behind us have a little more peace than we did.

Potty-Related Adventures

I have learned that kids do crazy things. And that crazy things happen when you have kids. And that sometimes you will look around at all the crazy things in your life and wonder what the heck happened. Especially when it comes to pottying. Life with kids is full of potty-related adventures.

Like the time my husband was changing M and poop sprayed–sprayed–against the wall. You’re just never prepared for that.

Or the time I smelled something in the back of the car. When we were in a hurry to pick up J from school. 30 minutes away. And M had poop from her neck to her toes. No lie. And when I opened the diaper bag, there were wipes–thank goodness–but no extra clothes. (Why do I always forget to check the diaper bag before I go places??)

So, recently we’ve been potty training J, which has thrown us into an entirely new world full of discussions about poop and appropriate sanitation and who is wearing underwear. Since J could walk, privacy in the bathroom has been negligible. But, now that he’s actually paying attention to what we’re doing, there are all sorts of uncomfortable questions when–let’s be honest–I really just want to be left alone.

Which brings me to our potty-related adventure at J’s school this week. J finally felt ready to wear underwear to school, and I worried about him the whole morning because he’d told me he was afraid he’d potty on himself. When I went to pick him up and he still had the same pants on, I celebrated. The only problem was that he’d refused to potty at school. All morning. So, I took him to the school potty. And first things first: I hate public restrooms, even the mostly clean ones. But, there I found myself putting his bare bottom on the potty and trying to act all calm. Until I noticed a puddle forming at the base of the potty. I apparently don’t understand the physics of boys pottying, probably because I’m a girl. So, I told him to stop–which amazingly, he did–and I repositioned him. Except that this time, he peed on his pants. Which was EXACTLY what his biggest fear was. So, I pulled everything off, including his shoes. In the public restroom. (Which might have been my biggest fear.) And now, he won’t potty at all. He just asks for a diaper.

And this is why parenting is so hard. Because even when you’re trying your best and you think you have it all together, you don’t. There’s always a potty-related adventure right around the corner.

For this reason, I feel very sure that there will be another blog post titled “Potty-Related Adventures, Episode 2.” It’s inevitable.

Waving the Preemie Flag

A few days ago, I was reading posts on a preemie message board for a popular parenting site. I had no idea such online support existed when I was struggling through the NICU. I now know of several wonderful preemie websites and Facebook groups. But, I’d never been to any of the preemie boards, and I wanted to see what was there.

One of the questions on the message board was about a toddler in a baby gymnastics class. The toddler is a preemie and, as a result, is small and developmentally-delayed. The mother wanted to know how to handle questions about how old her baby is. Most of the advice surprised me. The moms agreed that since the toddler is older than a year, the mother should just say the baby’s real age and not adjust for the prematurity–that there is so much disparity in development after a year that it shouldn’t matter. While that might be true in many cases, the toddler in question was in a class where her delays were apparent because all the other children were walking while she was still crawling. The comments that really amazed me were the ones advising that any unsolicited information about the toddler being a preemie might put off other parents by giving them more information than they really wanted.

My gut reaction was to totally disagree, and I decided that clearly this message board was not for me. Even days later, the question still nags at me. Why?

Because I believe prematurity is something to be celebrated. Because the roads our babies have traveled have been long, rough, and full of bends, but when they get to their destination, we’re all stronger for it. Why should we not celebrate the miracle of life when life should not have been possible? Why should we hide what makes us unique? Why distract from a very real issue, that far too many babies in this country–in this world–are born far too early and we should do more to prevent it? You don’t have to wave the Preemie Flag everywhere you go, but if someone asks you how old your baby is in a setting in which it’s apparent your baby is not able to walk when other babies can, why should you hide the truth?

Some of the mothers were worried about giving too much information or wearing people out with the discussion of prematurity. Maybe some people get sick and tired of hearing me say preemie, but you know what? This is my life. Every second of every day I am reminded that I am the lucky one who left the hospital with two children. I wake up to the noise of toddler feet on the carpet next to my bed, and I fall asleep listening for cries from the nursery. My day rises and sets on the schedule of two little bodies. So, when asked about my children, am I not supposed to give an honest answer? “She is 11 months, but she’s a preemie so she’s like an 8-month-old” only takes a second longer. If someone doesn’t want to hear that answer, then why ask me a question in the first place?

J was 9-months delayed during the time when he didn’t roll, crawl, walk, or talk. He was the size of a baby when he was a toddler. If I hadn’t said that he was a preemie, what would I say? It was obvious that he wasn’t your average 15-month-old! Maybe that’s the difference. Maybe waving the Preemie Flag isn’t so necessary when your child catches up within a few months of birth, as I did. But, I was born 4 weeks early, not 14! I guess what troubles me the most is the sentiment that other mothers asking about my children might be offended or bored by an answer that takes approximately 10 additional words. When did we become so immune to those around us that we didn’t take the time to listen? When did our world start spinning so fast that we couldn’t be bothered to really connect with other human beings? We need to collectively put our iPhones down and take a breath if we’re too busy for a good human interest story now and then. I love to hear other people share their stories. For me, that’s what makes life fascinating.

And if I show up for a gymnastics class with my small, developmentally-delayed preemie and you ask me how old she is, you will get the truth. If it puts you off that I give you more information (as in 10 additional words) than you expected, why even make small talk in the first place? Because prematurity in my little family has been like a glacier that remade the shape of us. If we aren’t allowed to be open about our journey and you aren’t willing to share yours, then I don’t think we can be friends.

Curing the Chaos

My children have a new daytime sleeping routine. They tag-team. My husband calls them whack-a-moles. One pops up, and the other goes down. At 10 a.m. M takes a morning nap. At 12 p.m., just at J is falling asleep for his nap, M wakes up. At 2 p.m. J rises, and they overlap for a few minutes. Then, I put M down for her afternoon nap. The synchronicity of it is unbelievable. There is not one minute in a 12-hour stretch that I truly have to myself.

The end result is chaos all over the house, from the kitchen to the mail bin to the laundry pile. The bonus room has a splattering of toys from one end to the other, like someone stood in the middle and threw toys in every direction (which he probably did).

The chaos is also in my head. Gone are orderly days when I planned anything, even something as minute as when I wash the dishes.

At 2 p.m. today, I took my first look in the mirror, and what a fright I found in a robe and sweatpants. “I am a skunk!” So, during my daughter’s afternoon nap, I put Sesame Street on for J, and I took a shower. I got dressed. Then, I looked around the mess to see where to begin, an attempt to put things back in order.

And I sat down to blog instead.

A Season Of Illnesses

Where in the world have I been?!

Well, two weeks ago we went on our first vacation in 18 months. Trips with the kids aren’t stress-free, but they’re still a welcome change from our routine. We spent a week at the beach with some of my family. J is just now old enough to really appreciate that we’re on vacation, and some of his questions were amusing. Why are we at the beach? Why is Papa not at work? Why are Pop and Mae here? (His whole world has changed with his recent discovery of the word why, and he now uses it A LOT.) We had to teach him the point of a vacation because in his world it makes no sense to leave home to go stay in someone else’s condo.

Unfortunately, while we were on vacation, both kids came down with colds. On the way home, we had to stop in a CVS MinuteClinic for J to see a nurse practitioner, who confirmed that he had a double-ear infection. Then, a few days after we arrived home, we had to take M to the doctor, and she also had an ear infection. In fact, hers was so bad that her ear drum had ruptured, even though she’d never run a fever and wasn’t overly fussy. The next day J ran only the second fever of his life, which brought on another doctor’s appointment. A test showed he actually had the early stages of mono, though his virus has now traveled through the whole family, making mono an unlikely culprit. The end result is that we have been one sick–and busy–household for weeks now.

All this illness has made me extremely nervous about RSV season. Before J, I never worried much about cold and flu season. Being sick was an inconvenience for sure but not life-threatening. J’s first winter was a terrible one for me, because we were housebound. But, I kept him illness-free until he was 17 months old, giving him some extra time to get bigger and stronger.

M is a different child and a different story. She’s 9 months old going into RSV season, instead of 3 months old. She has an older brother who exposes her to all sorts of illnesses. I think she is stronger than he was because she was less premature and she’s older. She’s been in Mother’s Morning Out for a few months, and until recently, I was sure we were making the right decision by exposing her to other babies.

I’m no longer so sure. It is unlikely she’ll receive the Synagis shots to protect her from RSV, even though our doctor has been advocating for her to get them. And with all the illness lately, I’m really pondering what is in our best interest.

Pulling her out of Mother’s Morning Out would have career ramifications for me. I’ve already abandoned most of my professional life, because caring for these two tiny babies has been my job, more than a full-time job. But, I’m having to make some hard decisions now that will largely dictate the next several years for me, and I am struggling. I think I know what I must do, but it doesn’t make the decision any easier.

The Space Where NICU Parents Meet

Parents with babies in the NICU have such a weariness about them. It’s not just the lack of sleep; it’s the constant stress. All the worry about all the things worth worrying about. Every parent has such a fascinating story. Each parent comes from a different place in life to this common ground that we all share. It doesn’t matter your education, your socio-economic status, your birthplace, your color, your religion, your marital status, your gender. We are all NICU parents. We all have a long haul ahead of us. We all have baggage that we can’t seem to leave behind. And we stand in the middle of the emotionally-draining, frightening, lonely NICU, and we wonder if we’ll ever make it out of here. And not just here, as in the NICU, but here as in the emotional space where walking this road strands you. Having a baby in the NICU challenges everything you believe, everything you dreamed, and everything you love. It turns you inside out. Your pain is written all over your face. You feel as if people on the street must pass you by and feel sorry for you. They have to know that you’re walking around without your heart, the one you left by your baby’s bedside.

I remember so vividly that hollowness, that feeling of despair, that antsy desire to be anywhere but here and nowhere but here all at the very same time. Nothing is right in the world, and nothing is the same. Everyone has a different piece of advice, but none of them sound like what you need to hear. You are tied in knots, fit to be tied, tied down, ties flapping in the wind, hogtied. You don’t even know what you are. One minute you think you have all this heaviness under control, and the next minute you’re in the bathroom, balling your eyes out. You freeze people out, to save yourself from explaining. You wall yourself up, to hold it all in.

I wish it were socially acceptable for me go up to these NICU parents and hug them. I wish it were okay for me to kiss them on the cheeks. I have to maintain a distance, so they don’t think I’m crazy, but I want to give them some warmth to take with them throughout their cold days. I want them to know that they are not alone. No matter who you are, being a preemie parent is a test in emotional endurance. We all have good days and bad days, and then we wake up the next day to keep going for those tiny babies.

The help I can offer feels so minute compared to the depth of their pain. I wish I could do more.

Oceans Apart

Yesterday, I went through our bins of preemie and newborn baby clothes. I was surprised at how little emotion I felt as I methodically separated the clothes into piles: donate to the NICU, sell at consignment, and keep for the kids. There were only a few items that I kept for the kids, just a few reminders of their time as tiny babies. I thought I would be sad as I pilfered each bin, ruthlessly getting rid of the clothes my babies wore when they were tiny. When they were in the NICU.

In an odd way, it was the realization that I will never have another tiny baby that made me sad. It’s not about the clothes at all.
So, as I worked at my task, J wandered over to me. He now has two favorite words: no and why. I love both of them, because they mean he’s developmentally where he should be, challenging and questioning everything about his world. Until he asks me “why?” over and over and I run out of answers. This serves me right for all the questions I asked as a child.
————————————————-
J: “Mama, what doin’? What doin’, Mama?”
Me: “I’m sorting through your baby clothes. These are the clothes you and M wore when you were tiny.”
J: “Why?”
Me: “Why am I going through the clothes?”
J: “Why, Mama?”
Me: “I’m going through the clothes so we can give some away.”
J: “Why?”
Me: “Because we don’t need them any more.”
J: “Why?”
Me: “You’re big, not tiny any more. You and M can’t fit in these clothes.”
J: “Why, Mama?”
Me: (Sigh…) “Because you grew.”
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I held up a tiny onesie, one that I’m keeping for J. It’s the size of my hand. It shows how small three pounds really is. I held it up for J and told him that when he was little he could actually wear this onesie.
He looked at it, he looked at me, and then he ran off. The conversation was over. And he has no idea what I’m talking about. For him, the idea that he was ever tiny makes no sense. He still lives in the here and now. The past is too far gone for him to appreciate, especially a past he can’t remember.
But, some days I feel haunted by his past. His past was the one that marked me, changed me, shifted everything in my life. His past is the one that terrifies me with what ifs. Now I know so much more than I knew then. Thank goodness I had no idea how fragile his life was.
What if that tiny baby hadn’t lived?
I know one day he’ll be bigger. One day he’ll have more perspective. One day he’ll have his own big babies, and he’ll be amazed by the trinkets I’ve saved from the NICU. That onesie will shock him when I hold it up, a witness to how tiny he really was.
But, now? Now, it means nothing. J and I are oceans apart. All he knows is being big and healthy. He can’t imagine that he was ever separated from me, that he ever lived in a hospital, that his life was anything other than it is now.
And I keep imagining him as that baby, that tiny, fragile, fit-in-your-pocket baby.
I’m glad he doesn’t know what I know. Actually, I hope he never knows. I want him to know his story. I want him to read the journal I wrote just for him. I want him to grow up knowing he’s special, that his life has meaning and purpose. I want him to sift through the trinkets I’ve saved, the microscopic blood pressure cuffs and the tee-niny hospital ID bracelet. I want him to appreciate where his journey began, and I hope that he’ll love that his mother and father tried so hard to make the most of his first days in the world, though they were spent in a hospital. Maybe he’ll even read these words. 
But, do I want the man whom J will become to ever know what his mother and father actually felt? Never. I hope he has big babies. I hope he rejoices in his big babies, and I hope he never has to see them in a hospital.
I hope his babies are so big that they skip newborn onesies. I hope J’s wife complains that her babies didn’t even wear all their newborn clothes. I hope I’ll smile to myself and think about how J was six months old and wearing his newborn clothes. I’ll think about that first onesie he wore, the one his daughter can’t even fit on her doll. And I’ll be so glad for him.
In some ways, I hope J and I are always oceans apart.

Letting Go

I wonder if all parents feel this way.

I want to teach J to be brave. I want to let him go. I don’t want to shelter him and fret about him until he’s unable to forge his own way.

I confess that I still wipe down grocery carts when I shop with J, but generally I’ve put away the hand sanitizer and the alcohol wipes. I let him scrape his knees and hang off the deck rails, the ones close to the ground, when he pretends to be Super Grover. And when we get to the doors of his preschool each morning, I let him go.

I take M to Mother’s Morning Out. Other people care for her. She touches other babies, babies with runny noses. I let her go.

But, I never, not one, single day, leave them without thinking about their dots for fingernails, their heads the size of a clementine, their bodies hooked to machines. I never, not one, single day, walk away without looking back, glancing back just like I did when I left the NICU. I need a parting glance. I need to fill my heart with them, even as I walk away. I must leave. I must let them go, even when I’m afraid.

Call me crazy to wipe down shopping carts. Call me crazy when I institute strict hand-washing guidelines in our home. Call me crazy when I fret over the beginning of RSV season. Call me crazy. You wouldn’t be the first.

But, if you haven’t walked in my shoes, you don’t know what it’s like to hold a baby whose body fits in your hand. And you don’t know the strength it takes every day to make the choice to let your kids be kids. Just because I see preemies when I look at J and M doesn’t mean the world sees them that way. And I don’t want my kids to always be preemies just because that’s what I see.

Maybe other parents feel this way too. It’s just they see newborns instead of preemies when they look at their kids.