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”.

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.

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

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.