One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Friday, December 16, 2005

all's calm

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?" "Yes." "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.


Anonymous brooke said...

i found your site through -- well, the links on the side of other folks websites. i've been following your story for a short while. if i had an extra mp3 player i'd loan it to you (i know, i'm a complete stranger, but people help other people, it makes the world a better place).. anyhow, annika and i have similiar tastes in music -- i too love that stripped down acoustic stuff.. i've got lots of it, including dar williams. yeah, this stranger in oregon really appreciates your daughter's excellent taste in music. all the best and a quick, peace-filled recovery for not only for annika, but also for your whole family and what you are going through right now.

12/16/2005 12:53 PM  
Anonymous peripateticpolarbear said...

I'm so glad you had some Frankie time. Here's hoping for a conscious Christmas!

12/16/2005 1:11 PM  
Anonymous Anonymous said...

Moreena, if we sent you music on CDs, could you burn it onto whatever computer you have there and add it to your mp3 player?

Sorry if that's a stupid question...I SO want to be able to share some new music with you (even though, like the post above, I've never met you) but my grad student budget won't allow me to purchase an mp3 player until the next student loan check kicks in in January.

If music on CD would be at all useful to you, let us know. Or if whoever is able to get the mp3 player wants some music donations, we could do it that way, too.

Oh, and I also love and totally identify with Anni's taste in music. Pretty much any Dar song makes me reach for the kleenex. :)

Continued hope and prayers for better times ahead.

12/16/2005 1:16 PM  
Blogger Phantom Scribbler said...

Yes, I was going to ask if you have cd-playing capabilities, too.

12/16/2005 1:23 PM  
Blogger JM said...

Actually, I have a spare 15GB iPod I would be happy to send to you, for keeps. Please let me know if you would like it and I'll ship it out ASAP to whatever address works.

12/16/2005 1:57 PM  
Blogger moxiemomma said...

isn't there a way to set up a music allowance for mp3s for ipods, or a way to buy music e-cards? because we could do that and send them to moreena after jm sends the ipod and then moreena could grab any music she and anni want to listen to.

moreena, you will surely be flooded with music because there are so many of us who want to be able to do something, anything, to spare you even the tiniest amount of difficulty right now.

12/16/2005 2:07 PM  
Anonymous Nikki said...

I have a small MP3 player that I think will work for you, assuming I can find it. I'm fairly sure I know where it is, and my husband has an endless library of music - we can probably find a lot of stuff that will fit your criteria. I've been reading your blog for a while now, and I'm thinking of your family daily during this time. I will mail the player to the Kohl's house address when we get finished with it (hopefully by Sunday?).

12/16/2005 2:40 PM  
Anonymous Rowan said...

Oh, my. I so wish I could buy and MP3 player. I have so much soothing lullaby music. If you can play any CD's I'd be more than happy to burn some for you.
I'm glad to hear that Annika was able to have her hair washed while she slept.
I will hope for a conscious Christmas for you.

12/16/2005 3:15 PM  
Blogger Shannon, Little Marisa' s Mommy said...

We're always praying for Anni. Let us know if there's anything else you need....

12/16/2005 3:25 PM  
Anonymous Anonymous said...

Oh, Moreena. Your post brought tears to my eyes a number of different times. That Frankie is so dear. And your gratitide--well, it's just very beautiful. It sounds like Annika's on the right path now, thank goodness. Love to you all.

xo Catherine

12/16/2005 3:56 PM  
Anonymous anni metz said...

what great taste in music annika has! a la nanita nana is one of the most soothing songs i have ever heard and anything acoustic is just marvelous. if i had an mp3 player, i would hop in a car and drive it an hour to you in chicago, but alas, i dont have one. i sent a paper doll card to the kohl's house a few weeks back - did it get there before anni went into the picu? -anni

12/16/2005 4:07 PM  
Blogger halloweenlover said...

How many times can a person cry on one blog? Apparently a lot of times.

I also can send music, if you have that capability. I have tons of classical too, if you think your baby would like that too.

12/16/2005 5:18 PM  
Anonymous Candace said...

Moreena, I'm so sorry you're in this limbo state.

If jm is able to send an ipod the rest of us could send iTunes gift cards. I'm hoping the Kohl House address will still work?

12/16/2005 5:45 PM  
Blogger Yankee T said...

Oh, Moreena, "conscious for Christmas" is what I'm hoping for, too. Sending loving thoughts your way...

12/16/2005 7:09 PM  
Blogger Rev Dr Mom said...

Praying for consciousness for Christmas. Hugs for you Moreena.

12/16/2005 7:24 PM  
Blogger Running2Ks said...

It was so great to see you today, and beautiful sleeping Anni. Her room was so sweet--with all of the great gifts and balloons. And to finally meet you--I was honored. You are so beautiful, strong, and loving. I am thinking of you all.

12/16/2005 7:31 PM  
Anonymous Anonymous said...

will pray for that consciousness for Annika, and some rest and peacefulness for you . I'm glad the doctors seem pleased with finding Annikas trouble. I hope she starts heading down that healing path....much love. (I'm sorry I cannot help with the mp3 player...I still own VCR's! )

12/16/2005 10:21 PM  
Anonymous Marisa said...

Yes, Moreena can play CD's I've been told.

Moreena, expect a special CD from me hopefully next week sometime.

HUGS to my little Minnow.

12/16/2005 10:48 PM  
Blogger Jane Dark said...

She might really enjoy some of Kate Rusby's stuff...I'll put some things together.

12/17/2005 2:13 AM  
Blogger Sarahlynn said...

I have no iPod, but I do have hopes that you're using this quiet time to do a bit for *you* too. And Ellie has a cool "lullabye" CD that's surprisingly lovely and relaxing, except for an annoying rendition of Somewhere Over the Rainbow that sticks out like a sore thumb. I'll definitely bring a copy if I see you in a couple of weeks . . .

12/17/2005 2:23 AM  
Blogger Kathryn said...

I'm absolutely certain that Anni feels the strength of your love even through her sedation,- how could she not, when it shines across the ether to people who've never met either of you.
Too far away to send music, so I'll have to continue with love and prayers for that conscious Christmas.
Blessings x

12/17/2005 6:13 AM  
Blogger Moreena said...

Thanks, everyone.
No, I don't have a CD player here. I might be able to get one from child life, although I do remember from Anni's first and second transplants that they were hard to come by. Maybe things have changed, though. I have borrowed Joerg's laptop (although that doesn't allow me to connect to the internet from my room), and could play CD's on that, but finding a good place to set up his laptop on a permanent basis might be tricky. I don't have the cord I need to transfer burned CD's onto the mp3 player I have, and the silly player also does not play music purchased from iTunes (although it would play on the laptop). It might play from the Sony site, but the Sony site doesn't work with the Mac.

Hmmmph. Yes, I had been thinking it through in my sleep-deprived state.

JM - what a generous offer. I will take you up on it, but really just for a borrow...

And, really, the iTunes cards are a lovely idea, but know that we are honestly good. It might be fun if everyone posted their favorite song that they would like Annika to hear while she is floating along in her drugged haze, though.

12/17/2005 10:04 AM  
Blogger JM said...

Ok, I am sending the iPod today to the Kohl's House. It has all the necessary cords and what not to xfer stuff from Mac or PC, and you can load all your existing MP3s into it as well.

Like I said in my mail, you're welcome to it for keeps or feel free just to leave it at Kohl's House for anyone else who might need it.

12/17/2005 11:15 AM  
Blogger Scrivener said...

"Conscious for Christmas" just breaks my heart. We're holding you in the light.

12/17/2005 1:00 PM  

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