Our Newest Addition Comes Home

Our Newest Addition Comes Home: Surviving the NICU

© Portraits of Grace Photography

I’d love to tell you that we were in the hospital for three short, painfully glorious days full of fragrant flowers, pictures, visitors, and so, but our stay was much different.  Sure, there were laughs, lifelong friendships were made, and many, many pictures were taken, except what we faced, what she endured, is unimaginable to most. 

Many ask, how did you do it?

You just do.

You don’t think, you pray.  You don’t wonder, you plea.  You don’t imagine the worst, you hold on to HOPE and never let it go, you ask questions, you advocate, you never leave their side.

You just do.  Your do is everything.

Nothing is about you.  Everything is about her.  It went a little like this … eat, pump, read, hold her finger (her when able too), sing, pump, eat, a little sleep, shower or two, eat, therapy, more singing, love on her every possible second, pump, pump, oh, did I mention pump?!  It was the one thing I could control.  I desperately needed to control something.  I knew every ounce mattered in her little body.

Repeat. Repeat. Repeat.

She opened her eyes for the first time since birth at 21 days old.  I held her for the first time at 28 days old.  I saw her first smile shortly after.  Since then, she (we!) have never looked back.

Oh, the incredible nurses … without them, well, there is no without them, they are everything. They are doctors.  They are mothers.  They are survivors, warriors that fight everyday to save the lives of our precious wee ones.  I call them our earth angels.  They heal, they love, they give everything so effortlessly, so willingly.  They love our dearest Hope, just as we do.

They made the do possible.

On October 27, 2014 at 12:34 pm the last wire was removed and the discharge button was pushed.  Tears instantly flooded my eyes.  It was our turn.  It was our car seat.  It was our balloons.  No oxygen.  No Doctors.  No nurses.  No support, just us … just her breathing on her own with her tiny underdeveloped lungs.

hospital discharge

© Portraits of Grace Photography

Time stood still.

I had envisioned that exact moment for 141 days. Yes, one hundred and forty-one days in the intensive care nursery.

Say that again.  One hundred and forty-one days.

Undoubtably, Baby Hope is a miracle. She was given a 9% change of survival.  Most doctors we spoke to didn’t think she’d make it out of the delivery room.  Her high-risk OB doctor mentioned terminating the pregnancy.

I could never imagine giving up on her.  Deep in my soul, I knew she would fight and fight and fight! She takes my breath away.  She gives me the gift of seeing life so differently now … seeing just how precious every moment is. Now, I will forever stop and smell the roses.

Every. Last. One.

That day … that beautiful bright, sun-filled day, will forever be etched into my soul.  141 days, 5 surgeries, hundreds of blood transfusions, ECMO (baby life support), 150+ x-rays and every other scanner, beeping machine known to man (felt that way anyways), countless medications, and webs of lines, wires, and tubes, we placed our beautiful miracle into her car seat and left it all behind.

leaving the hospital

© Portraits of Grace Photography

We drove away.  The silence was deafening.

It was as if our 141 days just became three … those three precious days most women experience in the hospital.  Indeed, an unforgettable journey.  One day I will look back and process the trauma, but for now, I’m taking every moment to feel joy.

You just do.

For those that have followed our blog, you may have wondered where we went and for those that are new, welcome! We are officially back and I happily welcome to the blog … Baby Hope.

Pictured here at six months old and home (finally!).

Baby Hope's Homecoming from the NICU

© Portraits of Grace Photography

Our blog will take a new(ish) direction, yes, still lots of fun, meaningful play-based learning activities, messy adventures, sensory play, and silly antics, but I will also be sharing our journey at home.  From ways to improve language, to sensory integration techniques, to feeding and physical therapy — we’ll be sharing it all.  I’ll also be venturing back to graduate school to pursue a degree in Occupational Therapy specializing in infant sensory integration.  I couldn’t be more excited!! You know we love sensory play here at Crayon Box Chronicles.  Time to put all that research to action outside my home, eh?!

I hope to become a resource for those that have been affected by or interested in learning about CDH, Congenital Diaphragmatic Hernia, as well as sensory therapy, nutrition (another passion of mine), and overall holistic wellness.

For a more in-depth look at Baby Hope’s condition and journey through diagnosis and delivery (she even had a surgery while in utero), visit Baby Hope’s Journey, here on the blog.

We’re excited to be back and we’re ready to play! Thank you for joining us! I do hope you’ll stay and play.

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::: Join us on Pinterest,  FacebookTwitterGoggle+, or Subscribe by Email to see all our fun shenanigans! Be well. :::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::


7 thoughts on “Our Newest Addition Comes Home

  1. Erica says:

    Thank you so much for sharing your story. Our son was diagnosed with cdh less than a week ago. It has since been a whirlwind of apointments and tests mixed with moments of hope and despair. We are waiting to see if he is a candidate for the balloon procedure. Again, thanks so much for sharing your story and giving those of us going thru this experience some new understanding and most of all hope.


  2. Rosie says:

    What an amazing story of you and your little one. She truly is a miracle and a true fighter! You are so right, the nurses at UCSF are angels. So touched by your story and looking forward to exploring your blog some more. x

    Liked by 1 person

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