Thursday, November 19, 2015

Home Soon...

Home soon. As in,

"Will you guys get to go home soon?"
"We hope you'll be able to go home soon."
"Hopefully you'll get out of here soon!"
"What do we need to do to get you home soon?"
"I heard you're going home soon!"
"Are you ready to go home soon?"


It's a sweet but scary thought. She's overcome so, so much, but she still has a long way to go.

Home does not mean out of the woods. Home means less 5 A.M. x-rays and labs and more cuddles, but also more watching, closely by her hawk parents.

Home means quarantine from outside cold and flu bugs.

Home means finding trustworthy nursing. We're possibly two weeks out from home and still no word on any nurses to interview. I'm not nervous or concerned. At all. Not one bit. Ok, a ton nervous. Like a lot.

Home means no more quiet sleepable (new word, ten points for creativity) nights, but instead the whooshing sound of the ventilator again. A new ventilator that we have yet to learn and are not used to it's squeaks and alarms yet.

Home means nerves each trip out for labs or clinic appointments.

Tomorrow is the care conference and discharge planning meeting. It's where we'll sit down with Chloe's team and review what steps we need to still have her make (like making sure she's over the last of her infections, figuring out feeds, addressing recent belly issues, and pulling her PICC line). It'll be a weighty conference. I'm not exactly sure what to expect. And for that my stomach is in knots tonight.

Because we never know what to expect with Chloe.

Today I was disinfecting her high chair and the Child Life coordinator stopped in to ask what ink stamp pad color I'd like for a little project I wanted to do. I was shocked they have different colors, and said without hesitation, "Well, black or pink I supposed." Before the words left the edge of my tongue my memory flashed back to the day we found out everything and nothing and fear about our daughter. The night before our nineteen week ultrasound, nearly two years ago, I dreamed through the night of it it was a boy or a girl, but instead of dreaming in hues of blue or pink, I dreamed of pink and black. The images from the dream were so vivid in my mind the next day as I anxiously awaited the appointment. I'd come to fear those colors. Pink, a girl. Black...death? Problems? Losing her? What could black mean??

She's come so, so far from the black that plagued those first weeks and months until her birth. They say gray is the new black, and she's proven this. She's definitely not in the black zone for babies. She's a gray zone. A "we just don't know but we take this one day and one thing at a time" kind of kid. And we love her for that.

The surgeon who gave her a new designer heart stopped in today as he roamed the weary halls of the cardiac wing of the PICU and smiled. He said he heard the happy news that she'd get to go home soon. He also slightly was uneasy and unsure of his words, as if he himself was surprised to be saying them. Chloe gave him quite the scare a year ago during her BT shunt surgery when she nearly left us right after they closed her up and this same surgeon had to open her back up and move the shunt location. He also threw out his knee and needed time off shortly after Chloe's OR incident. Personally we think Chloe made him do this because of all she put him through. By the grace of God, Chloe's surgery when much smoother this time, but then the complications and infections set in and we were all scared. The surgeon looked at me today with a little grin and no words, so I helped him out and just said, "It's Chloe. We just never know because it's Chloe." He agreed wholeheartedly and walked out with a smile.

She's come so far. We nearly lost her multiple times over the last six months. But she's here and she's good and she's a fighter.

And she's going home soon, hopefully a date determined tomorrow.

And as I wiped down her highchair and reflected on those words together in the same sentence, pink and black, I realized they've been slightly redeemed. Because I need that footprint to put in my bible, next to Psalm 139:14, "I praise You for I am fearfully and wonderfully made." And whether that footprint ends up in bold black ink or in gentle pink hues, the truth remains that God is good.

We still don't know how this story will unravel and unfold, but I'm thankful that the Lord redeemed my fears in those simple colors and their meaning to me today. He reminded me that He can redeem even the hardest of situations, the scariest of valleys, the darkest of shadows, and the deepest of sins and change the situation and the person and weave their story into a larger and truly amazing story of love, redemption, and grace.

Chloe in PICU for common cold, October 14th 2014
*The background image above of the quilt was taken from the quilt my daughter lay on in the PICU just over a year ago. One of the most beautiful quilts I've ever seen met in one of the most hardest places-the cold stillness of a hospital. It brightened her room and cheered our thoughts as she slept off her first cold against its warmth and love. Thank you to all who donate quilts and blankets to not just our hospital, but to hospitals across the country. If you'd like to give a blanket to Children's Mercy Hospital of Kansas City, please visit this link to learn more {and if it has a end date on the blogpost, ignore it and donate to your little heart's desire as they're always accepting donations of new blankets}. 


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