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.

Tuesday, February 14, 2006

who's your sunshine?

Ahhhhh. It's been good to be home. Annika has been eating better, and smiling more. And Frankie, my little Frankie, she has changed so much just in the past few months. It's funny, because I'm usually all over my kids, every single second of the day, which means their growing is really a gradual process, no matter how much I moan about it happening too quickly. But now that I've been away from her so long, the changes are overwhelming. Like I must have missed a few steps leading up to these amazing accomplishments. And, no, I'm not going to go on more about the fact that she can operate doorknobs now (But, man! Could she even reach them when I left? Much less grasp the slippery circumference with enough strength to hold on and turn?) Mainly, it's little stuff. Like the fact that she constructs these long sentences with careful and agonizing effort to make sure no words are dropped, no matter how insignificant, sometimes rewinding and repeating the sentence with emphasis on the missing part. "I not going to upstairs to take a bath!......I am not going to go upstairs to take a bath!" Annika just watches Frankie now, with this amused grin on her face, like she, too, is surprised to come home and find this willful creature in place of the baby she expected. Annika announced the other day that it was time for Frankie to become a big sister, too. Like it was a rite of passage that she deemed Frankie now worthy of. To my pronounced, "Oh, really?" Annika rushed to assure me that it didn't have to be immediate, but perhaps when Frankie turned 3. When I explained that Daddy and I didn't really think now would be a great time for a baby, without going into any explanation of why the timing was bad of course, and, besides, we kind of liked having just two girls, Annika generously offered to have the baby herself. Jörg, always one for keeping it real, broke the news that Frankie would then be an aunt, not a big sister, but Annika's skeptical look pretty much ended that conversation in a draw. The day after I posted my thoughts on relocating the cats, I found myself chasing Frankie, trying to corral her into the bathroom for the nightly hands/face/teeth cleaning. Frankie was squealing, running about half-clothed, clutching one of those magically disappearing juice bottles for her baby doll, and generally exhibiting better evasive maneuvers than I remembered of her. Hepburn came up the stairs to investigate the commotion and ascertain whether any tuna might be spilled in the ruckus. Frankie heard Hepburn's tuna-beseeching mew, and stopped the chase to proclaim, "It's my friend, kitty!" Jörg explained that, despite the scratches and run-ins of late, that was the only way Frankie referred to Hepburn now, "My Friend Kitty." I took advantage of the distraction to scoop Frankie up and head for the bathroom. Frankie, oblivious, twisted over my shoulder to beam at Hepburn and proclaim, "Her my sunshine!" As in, please don't take my sunshine away. So I'm thinking she won that one without even trying. Then Frankie turned back around and cheerfully shoved the doll's magic juice bottle right up her nose. A-ha! The total aversion to bottle-feeding as a baby? Mystery solved!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Things are moving ahead with Annika. We've heard that she's been approved to be relisted for transplant, so I suppose that she should be officially on the list very soon. Of course, her surgeon still wants to wait to transplant her until she's stronger and has had more time to heal. But it's good to know that all the paperwork is in place should her situation change rapidly. Tonight we had to change the dressing on Annika's PICC line. It's actually a Power PICC, and so goes into a larger vein than usual. All her lower, smaller veins were completely destroyed from overuse. The placement of this line is insane. It's right in her armpit. Good luck getting a good occlusive dressing in a place like that: all hollows, curves, and bends. To solve the problem of securing it, the IR team went a little crazy with the white tape. And this was not the white silk tape, which releases from the skin with moisture. No, it was the white tape that is the medical world's equivalent of duct tape. It doesn't come off skin without much tugging and gnashing of teeth. And I don't know what the IR team was thinking when they taped this particular PICC line, but it honestly looked like it was Bring-Your-3-Year-Old-Nephew-To-Work Day and they had let little Buster go wild with the tape. That tape zigged; it zagged; it crossed over itself, several times, in completely unexpected ways. By the time we got it all off, there was a ball of tape on the floor large enough to headline a roadside attraction in western Kansas. Needless to say, Annika did not enjoy the experience. She decided, at 6 p.m., that she had had enough of this particular day and requested that we put her to bed. Frankie made sure that she stayed out of sight, just in case we got any big ideas concerning an early bed time for her, too. After just one story Annika snuggled into bed and fell to sleep pretty much right away. Frankie, on the other hand, negotiated and procrastinated until past her bedtime, clambering up on my back and asking for a "Piggy Ride." (And Jörg has been so wise not to jump on that little opportunity for humor.) The contrast reminds me how sick Annika still is, but she did have a very busy day. The morning started off with more letter and package-opening from our backlog. I just saved her letters and packages until she was feeling like opening them herself, and thus we had the joy of a little postal time-machine,christmas, good for months of fun courtesy of Christmas cards and a lovely set of antlers provided by Bettie Bookish to accessorize the morning's festivities. Then we headed to the ped's office for blood-pressure and heart-rate checkup, and then off to the hospital's outpatient lab, staffed by the friendliest phlebotomists around. We returned home just in time for a Valentine's delivery the Minnesota liver friends are pulling for her to gain back some pounds from the Minnesota liver crew, Marisa, Carson, and Sami and Kyle: a cookie bouquet loaded with those much-needed calories to combat Annika's 4-kilogram weight loss. Annika just kept muttering to herself, "Cookies on a stick!" in a will-wonders-never-cease type voice. Top off the day with a surprise visit from her good friend, Kelsey, and you've got one exhausting list of activities. So, sleep well, Annika. You deserve it. P.S. Annika's COTA account is set up now. You can access it by going to this page and selecting "Annika Tiede" under the drop-down menu under Donor Designations. There will be a more detailed page put up about her soon on the COTA website.

32 Comments:

Anonymous Joanna said...

So comforted that you have had some time at home and that Annika's new paperwork medical and financial is in place. You seem not to be too disorientated and just happy to be as a family again, often being back home can be so weird (overwhelming and just brighter and louder and realer than hosp). Hope you catch up on some peaceful sleep that you must so need. As for that tape, oh my goodness, Jessica's most hated thing, she prefers needles any day and we use cling wrap as much as poss (not on PICC lines though). Take care and REST.

2/15/2006 12:01 AM  
Blogger purple_kangaroo said...

So glad you're home and everyone seems happy. We have a "friend kitty" here, too. It's a neighborhood cat that hangs out at our place, and we've always called her Friend Kitty.

2/15/2006 3:34 AM  
Anonymous Beanie Baby said...

Yay for being home!

2/15/2006 6:33 AM  
Anonymous Crystal said...

I am SO happy to hear that you guys are enjoying your home time! It sounds like little Frankie is getting right into the swing of things, as is Annika. Hopefully you can get Anni retransplanted safely, soon, and get her back on the fast road to recovery! YOu are always in my prayers, and will remain there! Good luck to you!

2/15/2006 6:50 AM  
Blogger moxiemomma said...

yay for a very normal day! except for that tape incident. poor little armpit. hopefully you didn't have to use the entire roll to re-tape it.

the pictures are wonderful!

2/15/2006 6:55 AM  
Anonymous Marisa said...

The cookies were from Carly too! I forgot to add her name...shame on me!

2/15/2006 7:12 AM  
Blogger Shelli said...

I am glad that you are back home with your children.

I was thinking that you could probably have done a better job with the PICC than the team did. I am a former pediatric nurse that never placed a PICC before, but I could have figured out that it wasn't a good place to put it on child. I am sorry you had incompetance with that and I hope because of it they don't have to replace it.

I will continue to pray for Anni's recovery and I will do a post for her fundraising asap.

2/15/2006 8:30 AM  
Blogger Moreena said...

Shelli,
I think the armpit placement was because they put in a power PICC, rather than a regular PICC line, so I don't fault them for that. Although I don't like it.

It was just that unbelievable taping job. Ugh. Very badly done. All the nurses who came by to look at it just shook their heads in disbelief.

Moxiemomma,
Nope. We didn't use a bit of white tape. Just a tegaderm, which comes off relatively easily.

Marisa,
Thanks for letting me know. I'll add Carly in.

2/15/2006 8:40 AM  
Blogger angela marie said...

So glad you are all home, I pray that it lasts for a looooong time!

Just out of curiosity...how come she has a PICC and they haven't placed a Hickman? I'm sure the answer is somewhere in your archives, but I've only been reading for a year, so I may have missed that. (I'm goofy like that).

2/15/2006 9:05 AM  
Anonymous Anonymous said...

Smiling Moreena...

When I came to drop off valentines yesterday (sorry I missed you) I left Kelsey in the car...thinking maybe Annika would be resting. Upon returning to the car, she had big hot tears, rolling down her cheek. How could I have left her in there while Annika was RIGHT THERE FOR ME TO SEE AND TALK TO??? I took her back and she got to see her...it made Kelsey's day and she quickly added...'It's been too long since I played with Annika, can they come to our house when she is feeling better?" To which I said YES!! I must say when I laid eyes on Annika, I really was in just...awe. Really. Not only at how much she's grown since I last saw her, but do you know, she just exudes strength? Really she does. I just looked at her, if only for one minute and thought of all she's been through and I could just see the strength in her, her will and her wisdom. You have an amazing little girl, Moreena. Oh and Frankie is HUGE!! She ran to the door and sais "I ahn Frankie' and i said 'Yes you are!'. SO cute. I was honored to get to see them.

Take care and continued wishes for you to keep on the path to recovery.

Jill

2/15/2006 9:32 AM  
Anonymous peripateticpolarbear said...

her my sunshine....oh my goodness, so cute!

It just occured to me---you did get the little package I sent in December right?

It's amazing to me how much happens in a single day in your house. I'd go to bed at 6, too!

2/15/2006 10:03 AM  
Blogger Running2Ks said...

I am so glad you can have some family downtime during this difficult period.

I love that you have 2 "big sisters" now.

My thoughts and prayers are with you, as always!

2/15/2006 10:04 AM  
Anonymous Becca - Natalie's mommy said...

Yay home. Yah cookies. Yay Hepburn. I just loved reading this post so much. Home is good for the soul.

Do you have any of the adhesive remover that smells like oranges? Let me know (via this or email me) if not, and I'll see if we have some to bring you. Either that or we can both steal some from clinic tomorrow!! (he, he, he)

Since the bear is going to be sedated tomorrow (for her CAT scan) we're going to try to do the dressing change while she's still groggy. (We've got to change the PTC drain dressing and the PICC line dressing...why do they use that tape in IR? And why do they use tegaderm when they know Natalie is sensitive to it...sorry I just took over this comment that was supposed to be about Annika...)

But I do thank you for posting about a power PICC line. We're running out of veins too, so I wondered what they did about that.

Sorry for rambling...it's so very wonderful that you are home.

2/15/2006 10:15 AM  
Anonymous Sheryl, Justice's mom said...

Yea for home! I'm praying for some longer stints there...it sounds like you all NEED it.

Please tell me that someone went into phlebotomy and drew from Anni's PICC! I hate to think of her being poked with such a lovely line available... I had issues once with Justice, Stanford (with yet another weird policy) being unwilling to draw from a 3 french line (if you have a power picc, it's likely a 5fr, unless they've developed a smaller one) so I would "mysteriously" have vials of blood on hand when they came in for draws. The nurses and phlebotomists didn't mind a bit...one of the benefits of working on a PICC team as nurse I guess.

If you're in the mood for green ribbon pins for a fundraiser, I believe I still have enough supplies on hand to make a couple of hundred I could send your way. It's now an annual tradition but I'd be very happy to have Anni have the proceeds!

2/15/2006 10:16 AM  
Blogger Phantom Scribbler said...

What a great post. Frankie has just provided my sunshine for the day.

2/15/2006 10:26 AM  
Blogger Rev Dr Mom said...

So glad you are home together now; thanks for sharing the pictures of your beautiful girls.

2/15/2006 3:49 PM  
Blogger Rev Dr Mom said...

This comment has been removed by a blog administrator.

2/15/2006 3:50 PM  
Anonymous Anonymous said...

Moreena, those girls of yours are amazing. So full of sweetness and mischief. I love Annika's sense that this would be a good time to think about having another baby. Um yeah, sure. You know, with all that spare energy you have.

Ah, Moreena, here's to sunny days for all of you.

xo Catherine

2/15/2006 7:13 PM  
Blogger susan said...

Both your girls are amazing people, Moreena (and the apple doesn't fall far from the tree, either). "Her my sunshine" is a wonderful line. I'm so glad you're enjoying these days at home with your family, just being together.

2/15/2006 8:58 PM  
Blogger Bettie Bookish said...

Yay, antlers!

Merry Christmas Anni and Frankie! (Good choice, Anni, good choice.)

Rest is a wonderful thing, and you all deserve it.

~Elizabeth

2/15/2006 9:09 PM  
Blogger kirsten said...

Such great stories. Funny and heartwarming. I'm so glad you guys are home. Enjoy yourselves and stay there!!

2/15/2006 10:27 PM  
Blogger Shelli said...

Moreena,
I don't know if you know about Thursday Thirteen or not, but I participate in that web ring/meme every Thursday. I just wanted you to know that my 13 today is all about Annika. I hope I got all the facts right. Even if I didn't, it should generate a lot of attention as Thursdays are an incredibly high traffic day for me and other thirteeners. I am wishing you well.

2/16/2006 7:12 AM  
Anonymous Rowan said...

Oh that sounds so much nicer.

I'm glad that:
Frankie is so happy, with you, Annika, the cat.
Annika's going back onto the list.
Cookies come on sticks.
COTA is set up.
You have a chance to relax and to give Piggy Rides.
That you are home.

2/16/2006 12:03 PM  
Blogger Yankee T said...

HER MY SUNSHINE!!!! Oh, the CUTENESS!

2/16/2006 2:00 PM  
Blogger Kathryn said...

Along with so many others who comment here, love you all LOTS Moreena.
So glad you are getting some respite...hope the re-admission is stress free too.
Hugs and prayers, every day
xx

2/16/2006 5:39 PM  
Blogger Sarah said...

Keep eating those cookies Annika!

2/16/2006 6:37 PM  
Blogger liz said...

Hooray for being home!

2/16/2006 9:04 PM  
Blogger Kathryn said...

Hope the weekend has been restful, with no unexpected nasties for Anni.
Much love x

2/20/2006 5:37 AM  
Anonymous Anonymous said...

I'm very sorry to bother you, as you must have far more important things on your mind -
but somehow all of a sudden I can only read the atom.xml-side-feed (meaning your main page 'stopped' with the pictures from Wed, 8th). Has the link changed in any way?
Just asking because of the fund rising - it might be handy if people can read your blog as well.
Thank you!

2/20/2006 1:26 PM  
Anonymous Anonymous said...

I just sort or randomly drifted across your page, but I thought I might offer this: I had a picc line in for about 15 weeks during a pancreatitis attack. In order to protect it when not connected, my mother made up a soft cloth wrap, secured with velcro. This wraps around the arm, and folds the picc line against the arm. Might help.

2/20/2006 1:54 PM  
Anonymous Anonymous said...

sorry for rumbling about how your site was not working - all my machine's mistake. So please ignore message above...
Wonderful pictures of Anni.
All the best wishes for you!

2/20/2006 3:28 PM  
Blogger Jessica said...

Yay - so glad you are home where everyone can be together and relax a bit.

2/20/2006 4:25 PM  

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