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.

Wednesday, December 07, 2005

blanket-watching

(again, written yesterday (12-6), but posted a day later. She is currently having the fluid removed from her tummy and a drain placed in IR) I have heard, in the kindest way possible, that perhaps it's all been sounding a bit dire around here. When, in fact, we think that she is actually doing very well. Very sick, yes, but also dealing with it amazingly well. Part of the problem is time. When you only have 5 minutes and your mind is actually still mostly up in a tiny room on a different floor, you tend to stick to the facts, and really only the facts that are most needling. There's no time to put those facts in perspective, or into a context that might allow a better glimpse of the big picture. And then there is also a strange feeling that overcomes me every time I leave Annika's room to go post an update. The nursing staff has been practically chasing me away to go take a walk, take a shower, or eat a cookie. I'm pretty sure that they have all been briefed on the studies that show that parents who refuse to leave their child's hospital room eventually become stark raving lunatics. But it's also when I leave Anni's room that I start to feel the saddest, the most worried, and the least pulled together. It's like this: you know how, as a parent, you can't help but sneak in to your child's room at night to watch them sleep? Eyes closed and movements stilled, you finally have a chance to see all the little details that escape your notice during the rush of the day. You see how her eyelashes form a perfect curve just above the cheeks, and that those lashes are perfectly spaced and curl up in the most perfect decorative fashion, wonderful as the curlicue on top of a soft-serve cone. And then you notice her little seashell ears and that nose so inexpressibly wonderful and, if it weren't for the fact that disturbing her sleep might have seriously negative repercussions affecting your own chance for rest that night, you might crawl in to bed next to her just to match your own breathing to hers, marvelling at the strength moving her chest up and down so evenly, inhaling that scent of sleeping child for a few moments longer. Then, as you are leaving the room, you turn back at the doorway and, suddenly, you don't see her chest moving anymore. It's crazy, but you're gripped by a choking fear that leaves your reasonable mind scoffing. And you know that it's only because you've just been right next to her, staring at her so closely that that movement of breathing seemed so gigantic. At a distance, watching someone breathe is never so momentous. Of course you don't see her breathing from so far away. But you go back, every single time, tensely scanning the blankets, searching for that upward movement that proves life is still as it should be. So right now I am in something like a state of constant blanket-watching. Surely I am staring at the monitors that display her vital signs way more than is healthy. And if I match my breathing to her fevered pant right now, I hyperventilate. But still there is so much to marvel at, and I see that she is still strong, despite whatever it is that is going wrong. Annika was moved out of the PICU and back to the regular transplant floor on Sunday evening, sooner than anyone had expected. Tonight, Tuesday, we are back in the PICU with a suspected bacterial infection. The source of her bleeding is still unknown, as her shunt is definitely still working. Tomorrow she will go to interventional radiology and they will drain the fluid in her belly that has been making breathing so difficult for her. It's possible that the fluid will simply reaccumulate after this procedure, but the doctors are suspecting that the infection is stemming from that fluid.

18 Comments:

Blogger Phantom Scribbler said...

Have we mentioned that we think you are doing amazingly well too, Moreena? Because we do. My god, such gorgeous writing in a time of such stress.

Hugs to you, and fingers crossed for Annika to lose the infection along with the extra fluid.

12/07/2005 10:15 AM  
Anonymous kristen (Havalah's mom) said...

Moreena,
I am with you in spirit and in my heart, I hoped they get some insite as to why the bleeding is happening soon, but I am happy to hear the shunt is working. We sent a little package in the mail for Annika 2 days ago , so it should be arriving at the Kohl's house today or tommorrow... I know you won't be able to pick it up, and Annika may not be ready for opening things yet, but i just wanted you to know it's there so it doesn't get lost in the shuffle. Thank you for keeping us updated, because like you when you leave the room, until I read one of your updates I always worry that things are even worse.
Kristen

12/07/2005 11:19 AM  
Anonymous Joanna said...

Moreena
I'm stunned that Annika has had more bleeding after all that you've gone through. I hope that is an isolated event following the surgery and that her infection clears up after the fluid is drained. Your blogs about Annika is like the thoughts in my head about Jessica only you are much more eloquent than I am. How much we love and adore our precious babies and how uniquely wonderful they are to us. I also marvel at Jessica's strength in hospital and do the monitor obsessing and never leave her (you don't mention dreaming about blood but 5 bleeds have certainly made me very sensitive to that). Jessica actually likes being in hospital because she gets me 100%. You are doing an amazing job and your strength inspires me. I continue to think of you and hopefully send some energy your way to help keep you going like everyone did for me through Jessica's tx this year. I hope that Jessica and Annika get to meet one day because they sound like one of a kind. We treasure every moment. Take care, Joanna (Jessica's mum from CLASS)

12/07/2005 11:28 AM  
Blogger angie said...

I have been thinking so much about you Moreena....and hoping that Annika is doing better. I'm sorry to hear that she is back in the PICU. Emma did that after her tx...the fluid accumulated, her breathing got really bad, and she had a nasty bacterial infection....no fun for the child OR the parent! I pray that they drain the fluid and it stays gone. Your writing is SO amazing...the way you wrote about going back to check if they truly are still breathing was so true! Your in my prayers. I hope to hear that Annika is doing better soon.

12/07/2005 11:41 AM  
Blogger Yankee T said...

You are in my thoughts, constantly. I can't imagine the pull back to that room. I would be a total maniac. You are so strong, and I wish you didn't have to be!

12/07/2005 12:19 PM  
Blogger Jane Dark said...

What Phantom said. Hugs, and thanks for the update.

12/07/2005 12:20 PM  
Anonymous Anonymous said...

Wow,... amazing little girl, amazing mommy. Hold on to your sanity, she will get better in time, the draining will work because it just HAS to. The shunt is working and that is SUCH good news...hold on to that gift. We'll pray about the rest. many many many prayers.

12/07/2005 12:48 PM  
Anonymous Anonymous said...

How beautiful! I know exactly what you mean. And I feel just the way phantom scribbler does--that poetry just pours out of you, even under such incredible stress.

Love to you, and I hope Annika feels better soon.

xo Catherine

12/07/2005 1:09 PM  
Blogger corndog said...

Out here on the edges, you don't owe us anything. No need to rationalize or apologize. If this is helping you recharge your batteries, by all means; I'll gratefully read every bit of information. Here's hoping and praying the doctors and nurses are on the right track and that Annika's recovering nicely, if unpredictably. And what Yankee said, I'm continually amazed by Annika's strength and yours too. I just wish I could have found out about it a different way.

12/07/2005 1:14 PM  
Blogger ocelot said...

I'm in awe that you can steal away for a few moments from such an intense situation and write so magically.

I don't think the entries have been overly dire. It's not like you're posting live from Disneyland. It's fantastic that you're giving us all so much information along the way, and I'm very thankful for it, though I also wouldn't want you to feel pressure from the whubbelyou whubbleyou wheb to supply it when your energies are required elsewhere.

12/07/2005 1:25 PM  
Anonymous Anonymous said...

You don't know how many times a day I check this blog for an update on *our* dear little Anni. I'm so glad to hear that there are positives along with whatever is going wrong. I hope they are able to get the infection cleared up quickly and am so thankful to hear the shunt is working properly. What a trooper Anni is - and you too Moreena - I simply cannot fathom what you are going through. All this emotional up and down has to be taking a toll.

Praying that draining the fluid resolves alot of the problems.

Holding you all close ~

tina

12/07/2005 1:55 PM  
Blogger jamie said...

You are an amazing writer. I understand completely everything you said.

12/07/2005 3:01 PM  
Blogger halloweenlover said...

I'm with Phantom. Both of you are doing amazingly well. Your posts about your lovely daughter always bring me to tears.

I'll be hoping for good results from this procedure too.

12/07/2005 3:30 PM  
Blogger Elle said...

I remember constantly watching the monitors. I was obsessed. I'm glad she is doing better. I think you are doing well too.

12/07/2005 3:43 PM  
Blogger Sunshyne said...

"This is what it means to be held.
How it feels when the sacred is torn from your life and you survive.
This is what it is to be loved, and to know that the promise was when everything fell
We'd be held."

I've been reading your blog for a week now and my prayers have been with you and little Anni. Remember, when everything falls apart, God promised He'd be there to hold us.

Love to you and yours.
Sunshyne

12/07/2005 4:42 PM  
Blogger Running2Ks said...

Moreena you are amazing, and Anni is still an inspiration with her fight and her strenght.

I hope that the fluid and infection becomes history soon. You are all in my prayers. I'll call you again.

12/07/2005 7:06 PM  
Blogger Jenevieve said...

It's funny, but your words are the only ones that have ever made me want children of my own.

Matt and I are praying for Anni, and you.

12/07/2005 10:18 PM  
Blogger Amanda M said...

Hi Moreena,

It's amazing that you're able to post. Wow.

You left a post on my blog once to the effect that you're not a "believer" so please know that I'm not trying to say anything religious -- but know this: if there's healing energy/karma/what-ever-you-want-to-call-it out there in the universe I hope it flows your way. I hope that Anni recovers in full strength soon, that the bleeds stop, that you get that shower the nurses are trying to get you to take, and that you both get to go home and see Frankie soon! Big, big hugs to you and Annika. If I can do any medical research for you out here in the everyday world, pls let me know.

I sometimes think of the super-intense and expanded time sense in the hospital as life outside of ordinary time - each day is about a week long and extraordinary in it's own sort of way, in it's pure intensity, the sheer amount of super-hard things to deal with, where even a shower - taken for granted in the ordinary world -- becomes such a luxury. We just came out of a mild hospital stint, and I got to take a bubble bath, and it blew me away that I got to spend a whole 15 minutes in a tub of warm water - it doesn't sound like much, but to be comfortable was such a marked contrast to hospital stress that it was shocking. (Not to make you feel bad...sorry, not my intent.)

Sounds like Anni has lots of packages coming her way, but what about something for you? Any treats we can send to you to make your days a little better? Trashy magazines, rare chocolate, nice smelling shampoo? Any silly everyday thing that we wouldn't even think of that would make a difference for you? 'Tis the season - ask away!

12/07/2005 10:29 PM  

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