72 Days Old: A Baptism, A Long Walk, and the 4th of July

Some days in the NICU are quiet days, and others are so full of activity and events and fun that it makes it hard to summarize in a single update to friends and family. Today was one of those days.

First, and most importantly, this morning we were joined by Father Mike from our church and Olivia was baptized. It was a short, but special ceremony, with just Luke, myself and our nurse Inna as a witness. We didn’t pick out a traditional baptism gown, but we did get Olivia ready in her best dress!

She looked like a angel. A perfect, little, sleepy angel.

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After the morning’s event, Olivia snuck in a snooze and a hold with Dad, before venturing outside for… get this… the 3rd day in a row! Late last week word began to get out that we were really itching for Olivia to see a bit of the world beyond her NICU room. The staff knew how much we wanted to take Olivia outside, and have graciously allowed us to do so every day this weekend. It takes extra equipment and extra staff, but with everyone on board it’s been such a gift.

We have some of the funniest pictures (and videos) of Olivia’s outdoor adventures, so we’ll share another post with our favorites soon. For now, here are some from today’s trip.

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Olivia had even more visitors this afternoon. Mike and Jen met us outside and joined us for a stroll around the garden before a mini-meltdown made us decide to head back inside.

Jen came bearing gifts, which I’m going to keep as a surprise until the time is right to share them with you all. I’ll give you a hint: both items will help Olivia check off items from her bucket list! And by her bucket list, I mean, all of the things we want to make sure she experiences, despite being in the NICU.

Last but not least, since today is a holiday (and Aunt Bey’s birthday!), Olivia was subjected to another one of Mom’s holiday photo shoots. Per usual, she slept through the activity.

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I Love It All – Olivia’s Father’s Day Letter

Hi Daddy,

It’s me: Olly olly oxen free! Just kidding. Olly olly OLIVIA. Ooooh-LIIIV-iiiia! Isn’t saying my name so fun? I love my name. I love music, and milk, and my mobile, too! And guess what else? I love you! Duh, Daddy. I love you more than most things. Except maybe my milk. My milk is my most favorite thing. I think. Actually, maybe I love you and Mom more. I’ll think about that one and get back to you soon, okay? I’m still figuring out lots of things so I just need a little more time to think.

Happy Father’s Day, Daddy.

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I think you already know this, but you’re pretty rad, Dad. See what I did there? I made a funny! I made a rhyme! I learned about rhymes from you, Dad. From when you read me books, like Dr. Seuss. And books about little trains and little blue trucks. They all rhyme and you read them really well in this special voice that makes all the words flow one after another, in a voice that sounds almost like a song, where all the words somehow rhyme! You didn’t always read them that well, but you do now. And they always rhyme. I don’t know how you do that, but you do, and it’s pretty cool. So you taught me about rhymes, Dad! How cool is that?

I know it’s only been two months, but I’ve learned a lot from you, Daddy. I’ve learned about rhymes, and literature, and fancy music like Mozart and Yanni. Yanni is my favorite. But you already know that. I’ve learned about light switches and stinky shoes and golfing and even how to cook a potato.

You taught me about hugs and kisses, too. And you taught me when they all come at me at once, lots of hugs and lots of kisses one right after another, really fast, that’s called a smother. And it’s your favorite thing to do. You taught me it’s not Mom’s favorite, kind of like the mornings, but smothers are your favorite and I think they’re becoming my favorite, too. Mostly because they come from you. Daddy smothers! Keep them coming, Dad. That can be our special thing. Smothers. But no squeezing, okay Dad? Sometimes you talk about wanting to just squeeze me so hard, but Dad! I’m so little! You can’t squeeze me, or my head might pop off! So stick to the smothers. I love your smothers.

Your hugs and your kisses and your stories and your music.

I love it all. I love everything about you and everything you do with me and all of the seconds we spend together. All of it. I love it all.

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I love you, Daddy.

Love,
Schooch

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Room 15

Luke and I have spent the large majority of every day since Olivia’s birth, in the hospital, right by her side. Not a day has passed without us both being here. 52 days worth of driving to and from the hospital. 52 days of trying to catch the doctors’ rounds, caring for Olivia with her day nurse, greeting her night nurse at shift change, eating meals in (or around) the hospital. 52 days of heartbreaking goodnights as we leave to head home.

If Olivia has had to spend 52 days here, so will we. It’s been 52 days of stress and worry, but also 52 days of love, laughing at the funny things she does, soaking in the sweetness of our little Olivia, and making her surroundings our home away from home.

And neither of us would have it anyway, honestly. For any of you who are parents, that’s probably pretty obvious. Whether Olivia is here another month, or another 6 months, I cannot imagine letting a single day go by without one (or both) of us being by her side here in room 15.

So, room 15. Since the NICU comes with plenty of rules regarding visitors, and so many of you live far away, we thought it would be fun to share pictures of Olivia’s room with you. This way you can envision her day to day a bit better, and have a real vision in your head as your read about her journey.

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View from the doorway
View from the doorway. Olivia’s crib and medical equipment are to the left, Mom and Dad’s space is to the right.
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Our space. A couch and table that turns into a bed, a rolling desk so Dad can work remotely, a recliner chair, and closet.
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From the other side
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Nurses station, computer, Olivia’s crib, and machines
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Peek at sleeping beauty
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Books and books
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Words of encouragement
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Blankets, books, and baskets from home
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The shelf beneath Olivia’s crib, where we store some of her clothes from home, sheets, diapers, wipes etc.
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Wise Men Say

I follow a couple of NICU parents online, and one of the dads recently created an incredibly sweet, short video clip to the tune of Can’t Help Falling In Love. Well I fell in love with their family’s video, and stole all of his creative juices. I literally created the same thing, except with clips of Olivia and scenes from our room.

I hope you enjoy watching this as much as I do, and perhaps I’ll start sharing more like it.

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Celebrating Firsts

Spending the first portion of Olivia’s life in the NICU is certainly not what Luke and I had envisioned for our family, but it is what it is and here we are: #NICUlife. There are countless things that cross my mind while being in the NICU, many of which include the laundry list of ‘typical’ memories we are missing – or hopefully simply delaying. Our first night at home, walks around the neighborhood, car rides, errands around town, visits with friends, afternoons at the park, evenings on the deck. Not to mention summer vacations, trips we had planned, and places we wanted to take our sweet girl.

Also on the list of events that are unfolding unexpectedly are holidays.

We spent our first mother’s day in the NICU, not at home how I had hoped. I turned 30 while hanging out with our sassy gal in the NICU. And today marks the beginning of summer holidays: Memorial Day. Olivia’s first Memorial Day! Instead of spending the day with outdoors, introducing Olivia to our friends at a picnic, we’re still here.

Celebrating these firsts… experiencing our family’s early memories in the NICU… is sad. My heart is often flooded with sorrow, sometimes jealousy, and even resentment. But at the same time, my heart is full. While sad, unexpected, and not exactly typical, this is our situation, our life right now. And so despite our environment, despite where Olivia spends her days or where she sleep, despite her condition and the string of unanswered questions, we carry on. We spend every day with our little girl, just as we would have under ‘typical’ circumstances. And we celebrate all sorts of firsts, as any other new parents would… just with slightly different surroundings.

So today, on Olivia’s first Memorial Day, we celebrate the start of summer and remember those who gave the ultimate sacrifice while serving our country, NICU style: with a decorated bed and festive clothing.

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Coming and Going

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When Olivia first arrived in the NICU, the room across the hall from ours was empty. For those first few incredibly frightening and emotional days, it was nice to feel like we had some additional privacy surrounding us.

Soon after, our first neighbor arrived. Olivia’s nurse warned Luke and me ahead of time: “A very sick baby is about to be admitted… you’re going to see a lot of people rushing in. Just a heads up so you aren’t surprised by the scene.” My first thought was one I probably shouldn’t share. I remember thinking: “Another ‘very sick’ baby. Well at least now we won’t be the only one. And maybe we won’t be the sickest baby anymore…” Obviously, in my right frame of mind, I would never wish ill will upon anyone else, let alone an innocent newborn. But that was my honest thought. Maybe, just maybe, we won’t be the sickest anymore.

A week passed. The faces and routines of the parents across the hall became familiar. We waved and smiled when we could, and witnessed each other breakdown in tears when we could no longer keep it together. We spoke on occasion to the grandparents as they visited, and socialized with one another in the lounge. But then we began to take notice of their baby’s progress. Like Olivia, their baby had been cooled, and warmed. We overheard that their baby came off the ventilator after only a few days. I watched mom and dad hold their baby, all bundled up, without many cords and wires connecting them to the bed. And I saw the little baby feeding peacefully from a bottle. A big bottle. Directly to the mouth. No ng tube. No continuous drip of a seemingly minuscule amount of breastmilk.

One morning, we walked into Olivia’s room and I paused. The baby across the hall had been discharged. The room now perfectly cleaned and prepped for the next baby in need of care. The first words that came out of my mouth were kind and wholeheartedly genuine.

“Oh wow,” I said as I observed the empty room. “Good for them. Good for them…”

Since their discharge, we’ve had another neighbor arrive, and that neighbor has since gone home too. We’ve seen a handful of rooms in Olivia’s hallway go from occupied to empty. We’ve seen parents walking past the secretary’s station with carseat in hand. Babies coming and going, all while we stay.

It’s a bittersweet concept. On the one hand, of course, I feel happy and hopeful. Happy for the families around us who get to bring their little baby home. Hopeful that one day we may do the same. But on the other hand, no matter how much I try to fight these feelings, I feel sad. Jealous. Resentful towards people I’ve never even met.

We don’t know if we will be here another two weeks, or two months. We don’t have a clear prognosis for Olivia’s conditions. We don’t know when, or if, we will one day bring her home. So we stay. We stay and we wait for answers and we hang on. All while loving on our little girl.

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Rock-a-Bye Baby

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Having a child in the NICU is strange. I’ll just say that. In terms of one’s journey into parenthood, it really throws you for a loop. Everything you imagined doing with your child happens differently, if it all. You don’t feed your fussy baby every couple of hours (at least we don’t yet). You don’t go through a bajillion diapers a day. You can’t just pick up and cuddle your baby whenever you’d like. And you aren’t the one at your baby’s side every time she falls asleep and wakes up.

This last one hurts the most.

It breaks our hearts to think about Olivia waking up when we aren’t there. Waking up at a time when the nurse isn’t in her room. Waking up and being unable to cry to let someone, anyone know she’s ready to have some love and attention. Waking up and being alone… The thought of her falling asleep alone is no different.

She doesn’t fall asleep in our arms. We don’t get to rock her slowly, or walk the house in circles until she dozes off. She falls asleep in her giraffe. Usually to the sound of a heart beat (noise machine), with a hand hug from mom or dad. What’s also different is that she falls asleep when she wants to, always. There is absolutely zero concept here of “putting her down” or “trying to get her down for a nap” or “getting her to fall asleep” to align with someone else’s notion of a schedule.

She’s here, in her giraffe, all day and all night. Awake and asleep when her body decides.

Fortunately, Luke and I have been able to spend every day with Olivia. So we’ve watched her fall asleep countless times. Similarly, we witness those little eyes ever so slowly wake up, multiple times a day. We don’t always know she is immediately awake (because of her lack of cry), but we see her cycle through awake and asleep times all day long.

Out of all the hundreds of times Olivia has likely fallen asleep in the past three weeks, there are three specific moments that I hope I never forget. These are the times I felt most like a normal parent, rocking my baby to sleep.

Three times so far I’ve sat next to Olivia’s bed and felt like it was me – her mom – who put her to sleep. Olivia was already tired, but she needed the love of her momma to help her get to bed. Each time started just the two of us. Olivia and mom, hanging out, starring into each other’s eyes.

One time I slowly rubbed her forehead. Over, and over, and over. Until each blink became a bit longer, and finally her eyelids remained closed.

One time I could tell she was snoozy, and I spoke softly to her. Told her stories and held her little hand until off she went.

And one time, she was fussing and crying, fussing and crying. With one hand on the side of her face, I placed a finger on her lip. She started sucking slowly. A comforting reflex. She immediately stopped fussing and seconds later her face calmed completely. The beads of sweat on her forehead dried up, and her eyes began blinking, slower and slower each blink.

It’s little moments, I’m learning, that make you feel like a normal parent in the NICU. Three sleeps, out of hundreds, reminding me that no matter what our circumstances are, I’m a momma now. And our little girl needs me.

 

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