Home, Sweet Home

This morning, Campbell woke up on Children’s 6 East, and tonight, she is sleeping at home.  What a day! She still has quite a bit of swelling, which will take several weeks to dissipate, but she’s making great progress.  We are thrilled she is home and look forward to seeing her new look emerge.

We are grateful for the doctors, nurses, and staff who work at CHLA.  From the most senior surgeons to the janitorial staff who mop the place clean, they show up ready to make a difference in the life of a child.  How blessed we are to live somewhere where we have access to this kind of healthcare.

I thought you might enjoy a photo recap of the past several days.  (Mom, this is for you.)

On Wednesday, Campbell proudly wore her Tiny Superheros cape as she awaited surgery.

Joel and I said goodbye to our girl at the kissing station outside of the OR and snapped one last shot of her sweet “before” face.  I am going to miss that face, even though I love her new one.  As you can see, the happy juice the nurse gave Campbell was already in effect.

Campbell immediate post-op.  These photos are a little closer to what she will look like after the swelling goes down.

Joel put together a side-by-side comparison on day one post-op.  Her swelling started but wasn’t bad yet.  As you can see, prior to surgery, her head was very square and her forehead indented above her eyebrows.  Now, her head is more round and her forehead continues out to her eyebrow bone.

As Campbell hit days two and three, the swelling increased.  Her entire head puffed like an over-inflated balloon of warm jello, and her eyes turned shiny purple as they swelled shut.  One of Campbell’s awesome nurses cut hearts to hold her oxygen cannula up.

Once the swelling peaked, the fluid moved quickly away from Campbell’s face and settled toward the back of her head.  She shocked us by opening her eyes early, and today (Sunday), her lower face regained definition.  Because the fluid is between her skin and  skull, it moves as she changes positions.  So much so, if she leans forward, the fluid rushes to her face causing it to scrunch up and her eyes to close. (I haven’t taken any still shots of that yet, but trust me when I say it’s crazy.)

Today, the doctors said she was making such great progress, we could take her home.  She was sprung!  All of us were very excited to return home.

We’ve had a couple of minor spit up issues since being home, but we’re working on finding what positions are best. Tonight, Campbell settled down with Daddy for a few minutes.

We are humbled by your continued prayers. Thank you! As we look ahead, we are excited about Campbell’s future and believe God has amazing things planned for this little girl.  What an honor it is to help her discover what her contribution is in this world.  She has so much to teach us, and I pray I can listen, watch, and learn. Thank you, friends, for walking this journey with us.

Our Tiny Superhero, Super Campbell

Tomorrow is surgery day.  Campbell is scheduled as a first case which means check in time is 5:30 am.  Admitting and pre-op procedures usually take a couple of hours so by  mid-afternoon, we should be able to see our girl and her new head.

While Campbell will undergo several surgeries in the coming months, this is the main cranial surgery until she’s around age eight.  Tomorrow’s surgery is a calvarial vault remodel (CVR).  Several people have asked about the specifics of this surgery, so here is the broad view of what she’s facing tomorrow.

There are typically three teams of doctors involved in this surgery: plastic surgeons, neurosurgeons, and anesthesiologists.  During the CVR, the neurosurgeons go in through the same headband-like incision from her distractor surgery and open up her cranium.  They remove the part of the skull to be remodeled and hand it to the plastic surgeons who have (in basic terms) a carpentry set in the OR.  While the plastic surgeons carve and reshape what they want her skull and forehead to look like, the neurosurgeons keep her derma and brain hydrated.  The neurosurgeons then manipulate her brain into shape they want, the pieces of the skull go back on, and the plastic docs build out an eyebrow bone. The anesthesiologist have the happy task of making sure she keeps breathing and feels no pain.

Campbell will go first to the PICU and then to the floor.  Blood loss and swelling are common with the CVR, and swelling usually peaks around 72 hours.  With no complications, Campbell will spend four to five days in the hospital.

During the CVR, the doctors will give Campbell a head that is closer in size to that of an elementary kid.  As she ages, she’ll grow into her head size.   By the time she’s seven or eight, she’ll be ready for the next stage and surgery which includes a mid-face advancement.

A couple of weeks ago, I went to visit the Thomas family.  Riley has Apert and her mom Summer shared Riley’s CVR photos with me.  I am glad she did to help prepare me for what’s coming in the days ahead.

On Monday, Campbell saw her pulmonary doctor to go over her sleep study.  While she seemed to do well, the results were inconclusive due to a fire alarm during the study.  Campbell didn’t sleep as long as needed so she’ll repeat the study after her first birthday.

See,  Daddy, I’m breathing just fine.

As we head into tomorrow, we are keenly aware that we are not traveling this road alone.  Friends, family, and sometimes strangers have come along side us, offering care and support. Our friend Jeff gave blood that will be used tomorrow – an amazing gift!  We’ve received notes and prayers, and while we haven’t been able to respond to each one, we are still very much grateful.  We also have been blessed with wonderful caregivers and therapists who love on Campbell week-to-week.

Amanda loving on our girl

Campbell and Shelli

Our friend Bryan nominated Campbell as a Tiny Superhero.  Tiny Superheroes was started by a woman who has a heart for kids facing medical challenges and disabilities.  Recently, ABC News featured the organization during its nightly broadcast.  Thanks to Robyn, the founder, and Bryan, Campbell’s cape arrived in the mail.

Campbell has always been our superhero.  Now she has the cape to wear!

We will be updating Campbell’s Facebook page with her progress.  You can find it here.

Joel and I kindly ask for your prayers.  For our superhero as she fights, for the doctors, nurses and staff as they tend to her, and for Joel and me as we wait. May God touch our girl with tender mercies and healing.