Our Perfect Christmas

This Christmas went down as the best ever. Norah came home for the shortest four hours of our lives. It was amazing. It was perfect. It was tearful. I can't begin to tell you all how meaningful this day was to us. Whenever anyone asks me if I had a good holiday, it is hard for me to hold back from telling perfect strangers all about how my daughter finally came home for four hours, after 17 months in the hospital. Not to mention that those 17 months have been spent on earning this day-trip. It was hard, it was worth it, and it is only the beginning of even better days to come.

She could sense something big was happening, even before
this elevator ride down.

After a fun Christmas morning with Harper, my mom and I snuck away to the hospital. Norah did her usual dance when I walked through the door, shaking her arms, legs, and head in excitement. As we prepared everything, she began to sense that something was up. I performed my mental checklist: vent, HME (humidifier), extra battery, spare trach, portable suction, a/b monitor, trach emergency kit, g-tube emergency kit, ambu bag, feeding supplies, formula, diapers, wipes, clothes, blankets, saline, and of course - my sweet girl all loaded into her carseat/stroller with her Inky beanie.

The package is secured. The eagle has landed.

Was this really happening? I don't think it totally seemed real until we strapped Norah and all her gear into our car. She knew we weren't in an ambulance. She knew we weren't in SDCH's transport vans. We were in our car. She was ready. I was ready. This was happening. When my mom and I came through the garage door with Norah, Harper and Jeff were waiting right in front of it, sitting on two chairs. We hadn't told him in advance (lest anything get in the way of it happening), and it was the best surprise EVER. "Norah! It's Norah! It's my beautiful-girl-baby-sister Norah!" Harper was running all over, back and forth between mom, dad, and sister. He kept petting her face and head. He kissed her several times. Norah could hardly contain herself either. She wanted out of that car seat. She wasn't crying - she was flailing her arms and trying to sit upright. She was using her unique communication to let us know what she wanted.

We opened Norah's presents in the living room, which was super fun. Thanks to the Billingsley's generosity, Norah made out like a bandit, with more presents to unwrap than the rest of the family combined. It was perfect. Harper opened them all for her helped, and she loved every moment of it. Norah was so comfortable. It was obvious that she knew she was home. We did the ASL sign for "HOME", and she seemed to know exactly what we meant.

In her very own crib with her Princess Peach figurine and
the stuffed frog sewn by her "Auntie" Heidi.

We then hiked up the stairs with Norah and all her gear. One of the first things on my list was to spend some time in her bedroom. I rocked her in the rocking chair, we laid her in her crib, and I sobbed. I remembered every time I rocked in that chair without her, crying, dreaming of that moment when I would feel the weight of her in my arms. I thought of all the times I looked longingly at her empty crib. And here she was: with us in her room. It was borrowed time, but I soaked in every delicious moment. My tears were mostly of happiness, but also of sadness, knowing that she had to go back, as well as sadness for all those times I was lonely for her in her empty bedroom. At least now I have these fulfilled memories to draw upon every time I enter her room, which is every day.

It was tough to squeeze everything into four hours,
but family cuddles on the bed was at the top
of the list.

We tried to fit too much into too little time. Jeff and I separately spent quiet alone time with Norah. It was amazing. We also, of course, spent time together as a family, just doing nothing. Cuddling, smiling, playing. Our hearts were whole.

But then it happened. it was already time to leave. My mom was gently reminding me of the time. I wanted to cuss her out. Of course, I didn't. I was simply frustrated that it was so short a visit. I didn't ever want it to end. She fell asleep on me. I procrastinated. Jeff and I acknowledged that it was only the beginning of the next phase of our lives. Norah will get bigger and stronger. With the success of this visit, it only meant that she was that much closer to coming home for good. Along with Norah's health, this was our focus for comfort. So we all loaded up back into the car, and took her back to the hospital.

Mama was procrastinating on going home.
She filled the time by taking photos of her
Sleeping Beauty.

Just before it was time to go, she fell asleep.
She knew she was home,
and she was so comfortable there.

We did the impossible task of unloading our baby to leave her there at the hospital. Again, she seemed to know what was happening. Norah is the smartest, most observant toddler I have ever known. In her way, she was the one reassuring us. She told us it was okay. She told us that she loved us, and had the best day ever. After a few hours, we left this smiling, satisfied face:

Norah gives us a parting smile as we say goodbye for the evening.

As she gets older, life in the hospital gets more difficult. She understands that we are not there all day and at night. She knows that this is her life. She seemed to make a mental connection between our leaving the hospital and the place that we took her to on Christmas Day. She seemed to understand that someday she will get to stay there with us, too. At least, I hope she understands. She still cries once in awhile when we leave after our daily visits. Or sometimes it's simply a barely detectable loneliness in her eyes. But it is there. 

We earned these four hours. We have worked damn hard and no one can tell us otherwise (IE Medicaid/ORS, but that is a story for another day). But now, whenever I am hurting, or lonely for my baby, I try to think of those perfect four hours at home. And I try to think of the future, when that time together will no longer be borrowed, but will be our everyday reality. Some day.

One last look at her room (top left window)
after our perfect Christmas together.