It's hard to know what to do for Annika right now. Because she is intubated and her abdomen, all the way across, was left open after surgery yesterday, the ICU doctors are working very hard to make sure that she is fully sedated. For the past couple of weeks, I've been crawling into bed beside her, turning myself sideways and scrunching up against the rail to give her the most space possible, while still offering her the shelter of my body. She's gone to sleep with her face pressed to my chest nearly every night that she's been in the PICU.
But now there is no room for me beside her. The ventilator takes up one half of the bed, and her I.V. lines are pinned to the other side along with her N.G. tube (the tube that goes into her nose and down to her belly). At least she is no longer paralyzed, although they do have her arms in immobilizers to keep her from pulling another extubation trick. On the one hand, I'm hoping that she is completely unaware of all that's in and around her right now, but on the other I do hope she knows that we are here with her.
Jörg is going home today with Frankie and my parents. He'll come back tomorrow with his final exams to grade, but Frankie will stay home. We're thinking about bringing Frankie back here for Christmas, although Annika will still be in the PICU. We long ago gave up on the goal of being home for Christmas, but our new hope: conscious for Christmas.
I spent last night with Frankie while Jörg slept in the PICU with Anni. It was great to spend so much time with my little one, and to have her fall asleep on me, pillow mama. My dad made her some spaghetti for dinner, and we sat around the table watching her eat. After she had finished her bowl, and snagged some from her Grandpa's plate as well, she looked at me thoughtfully. "I want to go home," she said, enunciating each word carefully, as if she had been rehearsing the sentence in her head to make sure it was well understood.
"That's a great idea!" I enthused, "Daddy will take you home tomorrow, along with Grandma and Grandpa."
She absorbed this news, nodded her head, and then clarified, "An you come wis me?"
"No," I shook my head sadly, "Anni is still very sick and I need to stay here and help take care of her."
"Nonny needs medicine?"
"Where is Nonny?"
"She is sleeping. In the hospital. She needs to rest to get better."
"OK," she nodded decisively. "I go sleep wis Nonny."
And so more explanations that she listened to with her much too serious face. It's hard to say how much she understood, but I tried anyway.
So right now I'm watching Annika laying in her bed breathing in rhythm with the ventilator. The night nurse took the opportunity of heavy sedation to wash her hair, so her bedhead dredlocks have been replaced with lovely curls. The little hippie refused all our entreaties for cleaning and combing that matted mess last week.
We're listening again to the selection of sleeping music she chose for my mp3 player. Unfortunately, we never foresaw a long-term ICU stay, and so we only put 25 minutes of quiet music in the lullaby folder. The rest of the memory in the player is devoted to the fun music that allows us to turn our hospital room into a "party room," as Annika calls it. Right now the goal is relaxation and sedation, so I just keep playing those same 25 minutes of quiet music over and over, standing up and backing it up to the beginning every time it cycles through, since our cheap model doesn't allow an automatic repeat if you've organized the music into folders.
I know some of you have been asking if there's anything we need, and here's something that would be handy. If anyone has a cheap mp3 player (I think Amazon has some with 128 MB for $30 or so) and access to some lovely acoustic music to put on it and wouldn't mind loaning it to us for the PICU stay, that would be just wonderful. I could very easily drop it back in the mail for you after we're out of here. Thankfully, most of our nurses enjoy the music, but the same 25 minutes of music over and over can drive anyone batty. And then there's the fact that Annika, with her well-developed dramatic streak, chose some rather depressing songs to include in her go-to-sleep playlist, which can leave me rather teary. Here's the playlist she selected as the most soothing:
"Tell Me Why" Pat Benatar
"Gartan Mother's Lullaby" Meryl Streep (I know! I was surprised too, but she has a lovely voice)
"Reason to Believe" Kelly Willis
"I Love, I Love" Dar Williams
"Family" Dar Williams (a cover, Cliff Eberhardt?, bring on the hankies)
"A La Nanita Nana" Tish Hinojosa
"Be Still My Soul" Paul Schwartz (Lisbeth Scott, vocals)
"Prayer in Open D" Emmylou Harris
"Last Night" Lynn Miles
I love her taste: she goes mainly for the acoustic stripped-down sound (So, for instance, she only really loved "Be Still My Soul" on that Paul Schwartz album, and it is certainly the least electro recording of the bunch), and she is a sucker for a lovely melody, particularly those melancholy minor-key ones. We certainly would have included the Sara Hickman Newborn songs, had she not just been listening to that CD at night before we came, and decided to change it up a bit.
So now we just wait patiently and try to keep Annika relaxed and comfortable. We watch for signs of healing, and hope nothing else goes wrong. The doctors, at least, are all smiles and relief that they finally have a known problem to address. I usually share a cup of tea in the afternoon with our PICU neighbor mom, and we compare notes and cry a little together. Then we head back to our glass-walled rooms and hold our children's hands and give thanks for hope and the warmth of little fingers.