Quiet Days

On days like today, when we have so few updates to share, my initial emotional response is relief.

Relief that today may be quiet. That Olivia may sleep the day away, peacefully. Or choose to be awake, taking in and absorbing her surroundings in stride. That she may escape the pricks and prods of needles, and the stress of new trials. Just for one more day.

But my relief is often met (and challenged) by a sense of anxiety.

Keep in mind that Luke’s and my existence prior to Olivia’s birth was almost entirely centered around our sense of selves… which to date had been mostly defined by modern and perhaps superficial measures: how we had grown, how far we had come, how hard we had worked, what we were good at… what we had achieved, and why we had achieved them. Our strengths, our capabilities, our work ethic led us to our high school accomplishments, college successes, our careers.

In our professional worlds, the faster things move the better. Everything is urgent. Being “so busy” is the norm. Efficiency is a key to success. One’s goal is almost always completion… of something, anything, whatever dozen things you are currently working on at any given time.

I suppose it’s in our nature to keep going. To work harder. To figure things out and “succeed”.

So the idea that there are days here, now, in the hospital with Olivia, where we aren’t actively trying, doing, testing, changing… anything… seems in a way wrong. It feels impossible not to question. It’s this that bubbles up as anxiety, meeting and immediately challenging my sense of relief on quiet days like today.

Days when the blinds are drawn, the door is kept closed, and we hush our little girl to sleep for a day of “rest and recovery”.

Continue Reading

Toy Time

After receiving an official break from occupational therapy two days in a row due to her trial extubation, Olivia was excited to hang out with her good friend Meg this afternoon.

And boy, did Meg deliver! Today Olivia got set up with a toy piano at the end of her bed, and some “bracelets” as mom will refer to them. The piano will hopefully make her more curious about voluntarily extending her legs, and meet her kicks with resistance to help build strength. The textured bracelets will encourage her to move her hands and wrists more, give her something to practice grasping, and also provide her with another textile experience.

Continue Reading

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.

Continue Reading

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.






Continue Reading

Fashionista Incoming

There have been many-a-talks lately about Olivia’s body temperature, specifically her ability to regulate her own temp without the help of a “warmer bed”. Technically speaking, Olivia was born full term, and now that she’s almost a month old the team doesn’t expect temperature regulation to be a problem for her. Or at least no more so than your average 4 week old newborn. And yet over the past few days the nurses have found her to be too cold during her assessment periods, and as a result they’ve resorted back to the warmer bed. So some of us on #teamOlivia are now on a mission to help her prove to the nurses that she’s ready for a crib upgrade.

Enter: baby clothes.

To date, we’ve kept Olivia in just a diaper for a number of reasons, including: her lines, her wires, and her leads. Not to mention the nurses needs to regularly assess her, her regular blood draws, and the fact that a certain someone hates, absolutely hates to be moved. Imagine trying to dress and undress a newborn with severe hypotonia and multiple PICC lines, who hates when any part of her body is moved. At least every 4 hours, if not more frequently. Doesn’t sound fun, and/or easy, does it? Hence why flying half naked in just a diaper has been the go to since birth. It’s been in everyone’s best interest, including Olivia’s.

But now it’s time. Time to dress the baby! Because sitting around in your diaper all day and night with just a couple of muslin blankets is sure to leave you cold every once in a while, right?

I am so excited. You have no idea how excited I am. Because, this:


Olivia’s closet at home is full of goodies, just waiting for her! And while we won’t be able to wear all of these adorable little things just yet, we’re going to give sleepers a try. Specifically sleepers with buttons (not zippers) to provide space for her lines.

Continue Reading

Coming and Going


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.

Continue Reading

Rock-a-Bye Baby


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.



Continue Reading

A Promise To Keep You Safe

A sweet friend recently sent us a gift after learning of Olivia’s story. Inside the beautifully wrapped box was a CD, and a note sharing that JJ Heller’s music has been distributed to healing parents and children in NICUs across the country. Similar to On The Night You Were Born – it took me a couple of days before I built up the courage to listen.

Finally, one morning when Luke and I decided to drive to the hospital separately I unwrapped the CD, put it in my car, and let the songs roll. I cried. Obviously. But after a week or so of listening I can now usually make it through almost all of the songs without tearing up. Catch me on a hard day and you may still see me crying in my car.

But I love it. I love every song. I keep this CD on repeat. I even purchased the songs on my phone and played a little tune or two for Olivia one afternoon when she was awake, and I’d like to do more of that moving forward. Dad would prefer we play Mozart, Vivaldi, or the like, but Mom’s going to keep the sappy songs coming.

Here’s one of my favorites. I hope you enjoy it as much as I do.

Quiet your heart
It’s just a dream
Go back to sleep
I’ll be right here
I’ll stay awake

As long as you need me
To slay all the dragons
And keep out the monsters
I’m watching over you

My love is a light
Driving away
All of your fear
So don’t be afraid
Remember I made
A promise to keep you safe

You’ll have your own
Battles to fight
When you are older

When you find yourself frozen inside
Always remember
When you feel alone
Facing the giants
And you don’t know what to do

My love is a light
Driving away
All of your fear
So don’t be afraid
Remember I made
A promise to keep you safe

Continue Reading

On The Night You Were Born


Luke and I received a multiple copies of Nancy Tillman’s On The Night You Were Born before Olivia was born. Gift givers warned me that it was a “sweet” book, and I knew to interpret that as “tear jerker for any extra-hormonal, over-tired new mom”.

In the days following Olivia’s birth, when we were aware of her fragile medical state, I couldn’t bring myself to pick up this story. I wanted to… badly. I wanted to read it to her – with her. But I had a hunch a full-on-ugly-cry-meltdown would ensue.

One night, when we were back at the house, I made my way slowly to her nursery. I found the board book tucked away in a basket of books, and sat on the floor. I read the book quietly to myself, and I’m pretty sure I cried the whole way through. The next day I mustered up the courage to bring it with me to the NICU, and a few days later I read it aloud to Olivia during a quiet one-on-one moment. I cried. Again. But I loved reading it to her. I loved every page. I found myself thinking “this is my favorite line” as I read each page. I’d flip the page, read another beautiful verse, and think “no, this is my favorite line.” My mind repeated that thinking page, after page, until the very end.

I’ve since read this aloud to Olivia a handful of times. Each time when it’s just the two of us, enjoying a quiet moment. Sometimes in the morning, sometimes before we leave at night as a bed time story. I’ll wait until the nurses have finished doing her up, or find a time when dad steps out to get a coffee. I like this book for just the two of us.

On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, “Life will never be the same.”

Because there had never been anyone like you… ever in the world.

So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name.

It sailed through the farmland high on the breeze, over the ocean, and through the trees…

Until everyone heard it and everyone knew of the one and only ever you.

Not once had there been such eyes, such a nose, such silly, wiggly, wonderful toes.

When the polar bears heard, they danced until dawn. From faraway places, the geese flew home. The moon stayed up until morning next day. And none of the ladybugs flew away.

So whenever you doubt just how special you are and you wonder who loves you, how much and how far, listen for geese honking high in the sky. (They’re singing a song to remember you by.) Or notice the bears asleep at the zoo. (It’s because they’ve been dancing all night for you!) Or drift off to sleep to the sound of the wind. (Listen closely…it’s whispering your name again!)

If the moon stays up until morning one day, or a ladybug lands and decides to stay, or a little bird sits at your window awhile, it’s because they’re all hoping to see you smile…

For never before in story or rhyme (not even once upon a time) has the world ever known a you, my friend, and it never will, not ever again…

Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.

Continue Reading