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, February 08, 2006

hard words to live up to

We are still in the PICU, but anticipate leaving soon. We will not be leaving because everything is fixed and OK and back to life as usual. I suppose I should have updated sooner, but I've needed a few days to come to terms with the situation. I don't want this to turn into my journal of grief, and the past few days have seen me falling apart, at least a little. I want to live up to the title I chose for this journal, to live up to the lesson of Annika's observation that falling down can be done with style and appreciation for the change in point of view that falling offers. It's not easy to do, as I've lost that enviable "It's all good, man!" attitude that comes so naturally to children. As you may have gleaned already, the news here is not good. Although it could be worse, I suppose. As of yesterday, there was still some hope that perhaps Annika's renewed bleeding was due to a stomach ulcer or other remediable issue. But yesterday Annika had an upper and lower scope, which revealed no possible bleeding source in her esophagus, stomach, or colon. This means that, by elimination, the bleeding must be coming from the vast area in-between the two, her small intestine. Past CT scans have revealed possible varices around Annika's Roux loop, which is where her bowel was attached to her liver during her Kasai, the surgery done at 6 weeks in the hope that bile flow would be reestablished. This is thought to be the most likely source of her bleeding. The bad news is that there is nothing the doctors can do to fix this bleeding, short of a retransplant, and the surgeon assures us that a surgery as complicated as a retransplant (complicated by Annika's difficult anatomy and the fact that she is still recovering from the shunt and subsequent bowel perforation and sepsis) is unlikely to have a good outcome right now. Giving it straight, she's unlikely to survive a third transplant at this point. So we're back to 1950's-style medicine, back before there were shunts and pediatric liver transplants. She'll take a blood-pressure medicine which helps prevent bleeds in adults, but hasn't been shown effective in children. Still, it might help and we don't have much choice but to try it. We'll hope that Annika's bleeds remain manageable, at least for 6 months or a year, when Annika will (hopefully) be a better candidate for successful transplant. We have no idea what to expect from life in the next few months. Annika will go home with a PICC line, in anticipation of the likelihood that she'll be needing transfusions and other IV meds on a regular basis for future bleeds. We'll probably become regulars at our local ER, and we might as well set up a regular Annika ambulance service, since she'll always need to be transferred to Chicago. We don't know if she'll be able to return to preschool. We don't know if we'll be able to sign her up for kindergarten, as all the other parents of 5-year-olds are thinking of around this time. We don't even know how much time we'll be spending at home. We don't know how bad this is going to get, with our hands tied behind our backs. There's so much we don't know. But it could be worse. That much, at least, we do know. Not that that's anything but cold comfort. For now we're hoping that Annika catches some breaks; that she can rest enough in relative health to recover from the storms of the past few months. In another few months, if we're lucky, she might have recovered enough to stand a good chance of surviving a retransplant. In a few months, if we're really really lucky, the bleeding might have stopped on its own. But she's been bleeding on such a regular basis, it's hard to hold out much hope that this will happen. It's like the optimism lobe of our brains has been surgically excised. All this time, through everything that we've been through with Annika, I've never really been able to imagine that we would lose her. As I've always said about myself, I have a deep well of denial and I keep myself well hydrated. But for the past few days, it's all I can think about. And I'm full of questions that I've never wanted to ask myself. Questions like: How much should we be willing to put her through in what may be a futile effort to prolong her life? If she only has 6 months or a year left, shouldn't we try to make those the best 6 months that we can? But what if we just buckled down for those 6 months and dealt with the unpleasantness? Might we then be able to save her life? If we couldn't save her life, but perhaps give her just an extra 2 months at the cost of 2 really horrible weeks, would it be worth it? The problem with having a sick child, besides the obvious stuff like walking around feeling like something is trying to claw the heart out of your chest, is that you're forced to make decisions for another human being, who is totally dependent on you. I have my own ideas about what would be enough for me, but how can I know what Anni would be willing to go through? I tell Annika that she can't eat right now, as she hasn't been able to for the past 5 days, because it might make her bleed again, which would make her very sick like she was before. She tearfully replies, "OK. Fine. I'll be very sick again then. Just let me eat." And, of course, I can't take that seriously because she is just not old enough to understand the ramifications of what she's saying. But it's not right to totally ignore the sorrow behind what she's saying, either. When Annika was first moved down to the PICU, the doctors had to place a central line in her bedside, never an ideal situation. One of the doctors tried valiantly to explain to the crying Annika why all this was necessary, "Annika, we need to put in this special IV to help us fix your tummy!" At this, Anni scrunched up her nose and began crying harder. I shook my head, explaining to the doctor quietly that she was a bit sick of hearing this "fix your tummy" business as an explanation, since it had been cropping up since mid-November and, thus far at least, never seemed to work. It seems that lately all I can do to comfort Annika is to assure her that she only has to put up with crap for a limited amount of time. I'm constantly explaining the terms of the negotiation: She can't eat until she's off the octreotide (and, yes, she does by now know its official name, not just that it's the "stop-bleeding-medicine") and has gone 6 hours with no bleeding ("How long is that? Maybe 5 minutes?" she wails); she can't remove the NG-tube until her poop turns clear (For the clean-out in preparation for the scope, at her first toilet session she only peed and when we told her we needed to see poop she replied, "Well, it's my pretend poop!" She twisted her head to look behind her and continued, "And it's clear!"); she can't go back upstairs to a regular room until the doctors are sure she's safe ("Yes! I am! I am just fine!"). At first Annika was really angry about bleeding again and moving back to the dreaded PICU. She threw her tooth fairy money across the room (after asking permission first!). Later on, I gave her a pillow to bang on, after she threw a half-hearted punch at me in frustration. I sat on the bed with her curled into the sheltering space between my breast and armpit while she cried with exhaustion, having beat the stuffing out of the pillow. "What can I do to make you feel better, sweetpea?" I asked, expecting to hear a request for a story or a movie or a song. Instead she said, "How about we go live in another country for a while?" She's a problem solver, alright. And I love that she never thinks small. But 5 days later, she seems to have accepted her plight, much as I have. She frequently spends her days with the TV on, music playing in the background, while doing a puzzle and perusing family photos on the computer. She only turns up the volume on the TV when something catches her interest. As usual, the commercials are as likely to be as interesting to her as the actual programs. One commercial for baby formula caught her eye yesterday. "Mama, we need to get that!" she proclaimed earnestly. "Why do we need to get that? We don't have a baby around anymore! Little Frankie eats grown-up food, you know." And I resisted mentioning the fact that neither of my girls had much truck with bottle-feeding, anyway. Saving the stories of the late-night feeds for the teen years, I suppose. "Well, you know, I'll need it for the baby that's going to pop! out of my tummy someday," she explained seriously, only allowing a bit of morbid glee in the explosive sound of "pop." "But that's still a long time away, sweetie," I explained. Jörg, ever the practical one, added, "And that baby food is unlikely to still be good by that time." "OK," she agreed, "And I guess I need to grow some breasts or something first, right?" We laughed at that, much to her disgust. I felt better, seeing a return of my happy child. And the answer to my questions, the answer which I knew all along anyway, was right there before me. Annika's gift, and I know it's one shared by all kids, is to find joy when others might have stopped looking. So of course we'll go through it all, together, for the chance for more of that joy. Whenever it comes, for however long.

54 Comments:

Blogger Rev Dr Mom said...

Oh Moreena. I 'm so sorry things are so hard right now. Hugs and good thoughts to you and Annika. Prayers, too.

2/08/2006 12:29 PM  
Blogger Scrivener said...

Oh my goodness, Moreena, I just don't know what to say except that I am so, so sorry that you're all going through this. It is so unfair. We're holding you in the light.

2/08/2006 12:29 PM  
Anonymous Jamie said...

I can't imgine what you must be going through. I'll keep you in my thoughts and prayers.

2/08/2006 1:04 PM  
Blogger susan said...

Oh, Moreena. I've got tears in my eyes at that last paragraph. And I don't know what else to say, but I'm holding you all in my heart, wishing you grace and wisdom and love. And holding out hope for Anni's strength to return and bleeding to slow/stop.

2/08/2006 1:05 PM  
Blogger halloweenlover said...

I'm crying in my office about this whole post also. Annika has the most amazing spirit and spunk.

Prayers from me too. It has to get better. It just has to.

2/08/2006 1:06 PM  
Anonymous Beanie Baby said...

Just. Not. Right.

I'm thinking of all of you. Please let me know if there is anything I can do.

2/08/2006 1:08 PM  
Blogger Sarah said...

You are all in our thoughts and prayers, everyday. Please give Annika bigs hugs from us.

2/08/2006 1:10 PM  
Blogger Phantom Scribbler said...

Oh, Moreena.

I don't know what else to say. I'm praying just as hard as I can. And thinking of you constantly.

2/08/2006 1:18 PM  
Anonymous peripateticpolarbear said...

Shit, Moreena, just shit.
This is so unfair and so wrong.
Your good outlook inspires both me and my potty mouth. I wish you and Annika all good things: an end to bleeds, no need for transplants but if the need comes the health to endure one, breasts and babies and lots and lots of joy and spunk and spirit and strength.
Continuing to pray. and swear.

2/08/2006 1:35 PM  
Anonymous Crystal said...

There are just no words...You are always in my thoughts and prayers.

2/08/2006 1:43 PM  
Anonymous Anonymous said...

I'm just crying for you Moreena, crying out of sadness and fear for you. Children are so beautiful and are such a gift...I know you're holding on to it for as long as you possibly can...many many prayers.

2/08/2006 1:50 PM  
Blogger purple_kangaroo said...

Oh, Moreena. I had to get up and walk away from the computer for a while to get control of my tears before I could type. Please know that you and Annika are in my thoughts and prayers.

2/08/2006 1:50 PM  
Anonymous Mary Lee said...

Moreena;
Some words of hope from a mother who has felt your exact despair.
Five years ago, Nora (then 8) had a bleed in her roux limb. Hoped and prayed for it to stop because short of a retranplant, her surgeon said nothing could be done.
It certainly seemed like it was not going to stop. Finally, after many weeks, without warning, it stopped.The prayers helped.
It recurred this past summer. Went on and on and on. We had every reason to believe it would stop on it's own until two very scary huge losses! Her surgeons said they had to try something. It didn't look as though a retransplant would be the answer. They would go into her small bowel and look around and try to think of something. Which is what they did. They came up with a fix on the spot. No previous cases to guide them, no instructions to follow. The surgeons are Dr. Avi Shaked and Dr. Kim Olthoff at Children's Hospital of Philadelphia.
When surgery was over, she looked at me with the most frightened look I ever saw in this brave girl's eyes and I wondered, did we do the right thing. Is this pain more that she can stand and will it be worth it.
After a month of very difficult recovery, she came home in time for Thanksgiving. As I write this, I am getting ready to watch her cheer at the middle school basketball game. She is a "flyer" because she is so petite. She is the happiest cheerleader there.

I added Annika's name for prayers at my women's prayer group this morning.

2/08/2006 1:51 PM  
Blogger Casey said...

I am so, so sorry your family is going through this. You're in my thoughts.

2/08/2006 2:09 PM  
Anonymous Anonymous said...

Moreena - again your post had me in tears - only to bring laughter at Anni's comments about the formula and breasts.

Dear God - how I HATE that you have to even think of these questions that have to break your heart.

I have no answers. I have no words of comfort. Right now I feel like I have nothing to offer you. I can only say that through you - Anni has brought so much to so many lives - she is truly a little beam of shining light.

My prayer is that when and if the time comes - you will know in your heart what the answers are. And please know that my prayers continue for you all. I wish I could meet sweet little Anni and hold her in my arms. Know that I am thinking of you all.

tina

2/08/2006 2:23 PM  
Anonymous shelley (Caroline's Mom) said...

Oh, Moreena. I just don't know what to say. I am sorry. For you, for Annika, for Frankie, for Joerg. It seems that Annika has inherited her mom's grace and spirit... may her will only get stronger. We are sending constant thoughts and prayers.

2/08/2006 2:29 PM  
Anonymous Laurie, Ashley's mom from CLASS said...

Oh Moreena,

I am not one to curse, usually, but....DAMN! I am so sorry so very sorry! I wish I could wave my magic wand and make this all go away for you, for Anni, Frankie and Jorge!

I just called my dad to tell him to read your blog. I read him your entire blog (just about) during the Christmas Holiday's. He cried...he prayed, and he had continuted since. I am sure your sweet Anni's name is on his prayer list and that he shared Anni's story with all of his friends too.

Many Many prayers for Anni! She WILL get better!

God Bless!

2/08/2006 2:31 PM  
Anonymous Anonymous said...

You're in my thoughts, Moreena. I hoping against hope for any kind of stability for all of you right now. Anything to let Anni heal and replenish those remarkable stores of strength she inherited from her mom and dad.

Norah

2/08/2006 2:51 PM  
Anonymous Anonymous said...

Liebe Moreena,
gern würden wir mehr für Euch tun. Wir sind Euch in Gedanken ganz nah und wünschen viel Kraft und vielleicht auch kleines Wunder. Es ist so deutlich, dass wir jeden Tag unseres kurzen Lebens genießen müssen und sollten.
Liebe Grüße an Annika, Joerg und Frankie, liebe Moreena.
Herzlich
judit, miklós und martin

2/08/2006 2:51 PM  
Blogger liz said...

Praying, praying, praying.

2/08/2006 3:02 PM  
Blogger DevilMacDawg said...

I'm just sorry. You have our prayers. I hate this for you. I really do.

2/08/2006 3:18 PM  
Blogger corndog said...

All that I can make fit in this little box are inadequate words that don't do justice to how fiercely I am hoping and wishing for good things for Annika.

2/08/2006 3:23 PM  
Blogger Yankee T said...

Oh, Moreena, dear...what difficult news. I am so sorry that all four of you are so caught up in this storm. It's unfair at best. Holding you, all of you, close in my heart and wishing I could help.

2/08/2006 3:47 PM  
Blogger LoriLaurieLauri said...

I've been reading your blog and praying for Annika for a long time, but never posted. But I just had to tell you that I am laughing and crying all at the same time right now at this post. Crying for everything that Anni and the rest of your family are going through, and laughing out loud at how funny she is!

You've got a special one, that's for sure!
Lauri

2/08/2006 3:56 PM  
Blogger Songbird said...

Moreena, your family is in my prayers.

2/08/2006 4:02 PM  
Anonymous Hannah said...

As long as the moments when Annika is happy (or angry...) overweigh those when she is desperate, you do the right thing.
And it is the gift of children to make those happy or just normal moments possible - in the long term even in situations that seem unbearable, if you think about them.
All my wishes for Annika. And much strength for you all.

2/08/2006 4:35 PM  
Anonymous Genevieve said...

So terribly sorry that you're going through this. Annika and you are in our prayers.

2/08/2006 4:49 PM  
Anonymous Anonymous said...

Oh Moreena. I'm so sorry it's like this. I can't even believe it.

But I want to say that you inspire me so much, even now, even from this place of pain and fear: the way you gentle Annika is so lovely. Your "sweetpea" question to her is so quiet and kind, when you must feel so much, so depleted, so at the end of your rope. I vow, reading your words, to bring more humor and gentleness to my own parenting, in good times and bad.

Thank you for that.

You are in our most fervent hopes and wishes, Moreena. You and your family.

xo Catherine

2/08/2006 5:13 PM  
Anonymous Laura said...

Praying for the best and hoping Annika gets to enjoy a normal childhood soon. Everyone has their burdens to bear in life, but it's just not fair when you have to start carrying them so early in life.

2/08/2006 5:17 PM  
Anonymous Marisa said...

Fight Annika, You fight with all your might littl one, until you can't fight anymore!

You have a bunch of warriors behind you....all of us here that read your blog! So many of us love you SO MUCH!

You have to get better so we can go swimming together!

Hugs to you my little minnow!

LOVE, Marisa

2/08/2006 5:18 PM  
Anonymous Anonymous said...

Oh Moreena, this has just got to get better...Annie is a fighter and has so much to offer all of us out here. There is other Dr.s...just a thought...I just feel so bad for all of you. I am praying so very hard for all of you...I love her pictures...she is a real sweety. Please give her extra hugs from someone who cares for her so very much.
colleen (spencers gramma)

2/08/2006 5:41 PM  
Blogger Jane Dark said...

What Scrivener said. You are in my prayers. I'm so sorry -- everything I say sounds so inadequate. Thank you for all the pictures, which are absolutely charming.

2/08/2006 6:02 PM  
Blogger Laurie said...

You kick butt Anni. You just do it. Kick it's ugly butt and thumb your nose at this crud and keep on keeping on.
Moreena, there aren't words. There are prayers and thoughts and tears and sadness and the inevitable giggle at your little warrior. She is quite the firecracker. I just love that baby girl.
And again, more prayers for all of you.

2/08/2006 6:08 PM  
Anonymous Anonymous said...

I second what Hannah said...
Oh how I wish I could have some of little Anni's gumption...If we all did, we'd all be better for it.
For better or worse, you're a mommy that rocks, and Anni and Frankie are blessed because of you!
Thank you for posting pictures of our little hero.
Prayers always....

2/08/2006 6:10 PM  
Blogger mc said...

I've got nothing new to say, just fervent wishes that things improve for Annika and all of you. I'm so impressed with her spirit; that a kid this sick can make us all laugh through our tears is pretty remarkable. Thanks for sharing her -- and yourself -- with us.

2/08/2006 7:11 PM  
Blogger John said...

If we couldn't love, our hearts could never be broken.

So much love, so much worry, so much suffering -- words can't express; I would show you my tears if I could.

I'm rooting for Annika and your family.

2/08/2006 8:04 PM  
Blogger Elle said...

You are all in my prayers.

2/08/2006 8:13 PM  
Blogger Nels said...

Oh, my. Just...wow.

2/08/2006 8:28 PM  
Blogger Psycho Kitty said...

I know it doesn't make anything feel better, but I just want you to know how much I'm thinking of you all. And it's a lot.

2/08/2006 8:38 PM  
Blogger Shelli said...

I am here, thinking about you there. God bless you.

2/08/2006 9:41 PM  
Blogger Shelli said...

sending much love and light to you and your family.

2/08/2006 10:43 PM  
Blogger Amanda M said...

Moreena,

Oh, big, big hug.

The writing on the wall sucks, it has for a long time. Unexplained bleeds are just plain bad.

However - the world has a way of turning around when we ask the universe for help, when we ask with every fiber of our being. Unless, of course, the answer is just no...

There's a fine line between never giving up and letting someone go....I've done both - I saved my grandpa's life when it needed to be done, and another time I let him die when he asked me to. If Anni's still wanting the world, and wanting life, then that's good. That's really good. If it is ever her time to go, she will tell you. Until then, maybe her lead of a different angle, going to ask for help from docs in a different country, or from a different perspective, might work?

She falls with grace that kid.

What about reiki, what about acupuncture, what about biofeedback games, the different healing therapies within reach? Healing strategies to get her calm and well through the next 6 months? Probiotics, dietary support? So that she'd be stronger, so that she could make it through a 3rd tx if need be?

When we've been really desperate, it's always been this strategy of knocking on doors...until there's some help. And sometimes help comes from unexpected places....you just never know.

Hoping some small miracles will come your way, that someday on a Tuesday things will take a turn for the better....

2/08/2006 10:59 PM  
Anonymous Anonymous said...

We continue to pray...

Frank (Marisa's Dad)

2/08/2006 11:19 PM  
Anonymous Joanna said...

Moreena
You know when Jessica was first diagnosed everyone spoke about adjusting to a new normal and when she was bleeding or recovering from her transplant, it was one minute or hour or day at a time. And we do all that endlessly someitmes exhaustingly because there is no other choice for our wonderful kids. I hear and feel your fears, so strongly, which are grounded in your all consuming love for your child. To try to keep some perspective, I tell myself repeatedly that no one knows what is around the corner for themselves or their loved ones (it doesn't help much but it keeps me sane). Octreotide shots that I gave Jessica at home and propranolol got us through 3 mos without bleeds before Jessica's tx. Her bleeds were also from that unreachable area and there was much talk of swallowing a capsule camera that may have provided clues to the problem, she was too small, Annika may not be but her surgeries could complicate its use. Keep going, Moreena, and keep writing because we can hear what is maybe too hard to express to those close to you. Much love.

2/09/2006 1:15 AM  
Anonymous Sheryl, Justice's mom said...

Speechless. Crying. Praying. Hugs to all of you.

2/09/2006 4:28 AM  
Anonymous Kim, mom to sami and kyle said...

I am so sorry you are going through this and that your mind is wandering to those dark places that none of us wants to think about. It is so hard to watch our kids go through all this medical "crap" let alone what Annika has been through the last few months. My prayers for your beautiful, spirited daughter continue. You are great parents and Anni is so lucky to have you. Someday she will thank you for that when she has her own kids!

2/09/2006 6:11 AM  
Anonymous Robyn, Emma's mom said...

I'm so sorry, Moreena. Continued prayers for your family.

2/09/2006 7:12 AM  
Anonymous Anonymous said...

Lots of Prayers continue for Anni and all your family. You are so amazing to be able to go through all your thoughts at this time and come to so many truths. What an inspiration that Anni the fighter is and Moreena, you too for teaching us all and being one of the best Mom's!

Melissa in NC

2/09/2006 8:38 AM  
Blogger Bettie Bookish said...

Moreena, Like everyone else, I wish that I had a magic spell to lift your family out of this very difficult time. I wish I could send a private jet to take you all to that other country of which Anni spoke.

My heart is breaking for you. And my prayers are all the more intense.

~Elizabeth

2/09/2006 8:40 AM  
Blogger Michelle said...

We were very happy to hear that Natalie went home but sad to hear that Annika is still there!

I truly hope that somehow the bleeding stops and life can get back to some sort of normal.

2/09/2006 11:05 AM  
Anonymous Rowan said...

I wish I had the words to truly express how sorry I am. I will continue to hope for the best for all of you. I send you strength and love.

2/09/2006 11:23 AM  
Blogger Elizabeth said...

Nothing original to say, but wanted to let you know that I'm reading here and thinking of you.

Hugs and blessings.

2/09/2006 11:39 AM  
Anonymous Tammy & Janna said...

Oh Moreena, so sorry to hear the news! We will continue to keep your family in our prayers. As spunky and bright as Annika is, may God see you through all of this.

2/09/2006 11:44 AM  
Anonymous Anonymous said...

Moreena,

My money's on Annika. And my heart is with you.

Mary, Ayden's grandma

2/09/2006 4:45 PM  

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