#chloehomeforchristmas

We're home.

Yes! We're HOME!!

 

I apologize for not updating, but it's been a whirlwind, and not the snowy kind with pretty white snow, but the "adjust back to daily schedule" kind. It's been good though. We've all much needed home, and sunken back into the coziness of our own beds, our daily routines, and our own dinners together at our very own table.

And then on our first Saturday home, I accidentally pulled out Chloe's GJ tube and we had to pack up all the kiddos and jump in the car to take her back on the two hour drive to have it placed again at the hospital. So we were almost home. Kind of. But all is well now.

We've adjusted sleep, and have Chloe in our room because she is now sleeping through the night and requiring less suctioning or needs at night. Our new routine is to take her up to our room around 8pm or just after night time meds are given. I carry her up with her travel ventilator strapped across me, and Alan follows behind with the vent stand, other vent, humidifier, then we both trade off running up and down the stairs to grab the suction machine, sat monitor, cords, meds, and essentials for the night. It's a tiny bit of chaos and a whole lot of peace knowing our daughter is right beside us all night long without the need of night nurses. Such a huge, HUGE prayer that has been answered. It's similar to having a newborn in that we wake up at odd times, either to suction or to assist a piece of equipment, like fill feed bag or water humidifier. Sure, there will be nights we won't get much sleep if she's restless, but even her restless nights (and she had three in a row when we got home) were still so much better than all of last year that we were home.

We've adjusted the kids' schedules and are back into a routine of greeting the day nurse, scarfing down breakfast, giving reminders that it's school time and not lego building time, and hugs and kisses for the Daddy as he ventures off to work, in his own office, with his own standing desk, and no more two hour commute and five days apart.

Kids do school work...

...and we cuddle. 

We've put up the Christmas tree, wrapped it in white lights, and sang hymns at the piano, all gathered around Daddy as he sings Christmas carols. We've opened a new book each night and read together, with Chloe curled up on our laps.

We're doing this. We're breathing a bit lighter and less constricted, though we're not out of the woods just yet. Our goal at home is to wean her off her oxygen and wean off ventilator again, and just continue to thrive and grow until the spring when we hope to begin the process of fixing her cleft palate and lip. Growing and thriving includes PT and OT coming to our home, daily PT and OT with me or the nurse or Alan helping. The oddest thing is that she graduated from the CHAMPS (heart home monitoring program from Children's Mercy) program, certificate and all, so we are no longer required to weigh her daily or weigh every single diaper since we have from her birth. Feel so, so weird to just throw a diaper away and not put it on a scale first, then enter it into the app for CHAMPS on the tablet they'd provided so they can see instantly how many grams that last poop was. For real: This is NEW territory for us. And scary. I find myself wanting to weigh them to know her output. 

Chloe showing off her certificate and also watching her first Tinkerbell on the big TV. She loved it. Till she fell asleep. 

And most of all, we're thankful for each and every one of you who prayed us home and loved on us through quarantine. Your encouragement means the world to us and to Chloe. 

From our family to yours, Merry Christmas. 

#chloehomeforchristmas