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.

Sunday, December 11, 2005

the healing power of...

DSC06521.JPG Frankie! Last night Jörg brought Frankie up to Chicago, along with my mom and dad. I practically ran to the double doors of the PICU to meet Jörg and Frankie. It was one of those happy tears moments. I took Frankie in my arms and held her tight against my chest, marvelling at how much her hair had grown and laughing at her new favorite phrase, "Hey, guys!" I brought her into Annika's room, and, to my amazement, Anni's eyes filled with tears, too. Of course, my first thought was, "Oh, no! She's in pain again." But Annika just held out her arms and said, "Hi, Frankie." After 3 days of Annika being completely non-verbal, except for the occasional "Please leave me alone! Everyone!", her voice was still hoarse as she launched into a conversation with her little sister. For her part, Frankie was not sure what to make of the all the tubes, lines, and monitors surrounding her sister. She perched in the bed next to Annika, wearing her serious hospital face. Anni, noting Frankie's reticence, asked, "What's wrong Frankie? Are you thirsty? Do you want a drink?" Frankie nodded a solemn "yes." And her sister, not having been allowed to drink herself for the past 5 days, asked the nurse to please bring a drink for Frankie. Anni handed the cup to Frankie, who took it with the care and respect usually reserved for high communion. DSC06519.JPG
Deciding to have another child after giving birth to one with major medical issues is not an easy call. If Annika's liver disease had been genetic, we definitely would not have done it. Even so, we still held our breath during the pregnancy, knowing that the odds were on our side to have a healthy child but fearing, anyway. And now we have our little Frankie, robust and healthy and full of sweetness. But I do have to admit that this ordeal has been even harder for me, emotionally speaking, knowing that I had such a young one still at home who was certainly confused by Annika's and my sudden and complete absence. Annika, too, missed her new little companion and constant fan club, which perhaps made this all harder for her, as well. But seeing them together again for the first time yesterday was a revelation. No matter what the difficulties, their love for one another is nothing but good for them both. The lift in Annika's mood when Frankie climbed into bed with her was nothing short of miraculous, and Frankie's great care and extraordinary gentleness with her big sister speaks of a maturity and empathy that is a marvel in a 2-year-old.
Annika's bleeding finally stopped last night. She is on the highest continuous dose of octreotide that she has ever been on, though. The plan is to start weaning her off the octreotide slowly and carefully tomorrow, hoping that she will be off of it entirely by Tuesday without the bleeding starting up again. The doctors are still trying to find the cause for her mysterious fevers. All the blood cultures so far have been negative, but they decided to change out her I.V. access lines anyway, just in case they were harboring bacteria. The plan was to rewire her central line (up by her shoulder), and to completely pull her PICC line (those are both large, longer-term intravenous access lines). Pulling the PICC line was not going to be such a big deal, but rewiring the central line is something that kids are usually sedated for. But because the sedation drugs seemed to be raising her blood pressure, which could pop a varix open again, starting another bleed, they decided to do it without any sedation. I convinced them to let me stay in the room during the procedure since they weren't going to use any sedation. The nurse and I started hitting the button for her morphine pump, hoping to take care of the pain of pulling the stitches and resuturing. She held wonderfully still as she and I were draped together under the sterile surgical towels, but somehow the wire slipped during the procedure, and she lost the central line altogether. So today she had to go back to Interventional Radiology and get a brand new PICC line placed, and the old one pulled for culturing. They also tapped another suspicious pocket of fluid, still trying to find the infection that is causing her fevers. They also pulled her N.G. tube today, much to Annika's delight. That and a good night's sleep last night (finally) have made today a much more pleasant day all around for our girl. I know I have promised to put an Amazon wish list up for Annika and Frankie, and I will. But also know that, despite everything that's been happening, and despite the fact that we have been getting worried that Annika is becoming depressed and anxious (her uncharacteristic silence, and also she's begun picking at her lips and skin until they bleed, evidently a new nervous habit), we also know that Annika at least has the emotional support of a family that is able to be with her all the time. Which is probably what does her the most good right now. I'm sure that once she starts feeling better, the allure of all-mommy-daddy-all-the-time will start to wear off, and that's when the shiny plastic things will be the real mood boosters. And, of course, feeling Frankie fall asleep on my chest and watching her jump wholeheartedly into snow drifts is my anti-depression drug of choice right now. She's done wonders for my mood, although we are frolicking in the shadow of the hospital, and I know that I'm missing half of my little snow play team. DSC06525.JPG


Anonymous peripateticpolarbear said...

Oh I am so happy I could cry.
I am so glad that Frankie could come up and join Anni. It looks like they both needed the visit (and mama too).

12/11/2005 6:02 PM  
Anonymous Anonymous said...

Beste Grüße an die ganze Familie aus Berlin und weiter gute Besserung! Wir halten alle Daumen gedrückt.
judit, miklós und martin

12/11/2005 6:05 PM  
Anonymous Lisa (Aiden's mom) said...

Your words describing about how it feels to have a second child after one with so many issues is EXACTLY what I feel. Thank you for saying it eloquently as usual.

The pictures of the girls holding one another, brought tears of joy to my eyes. They are protecting one another, it is beautiful.

I am praying all the time for you. All the time for that beautiful Annika. May all of this bleeding stop and you be home soon.

12/11/2005 6:11 PM  
Anonymous Sheryl, Justice's mom said...

Oh Moreena, I am SO glad your girls got to be reunited. The pictures are so sweet, they made a bit teary.

Like Lisa, your words struck home with me now too. Although Justice has done well, I still reserve a fair amount of fear for this next little one, due in a few months. Seeing yours together (and pictures of Aiden and his baby brother) make my heart smile.

Continuing to pray for answers and healing for Anni....

12/11/2005 6:22 PM  
Anonymous Anonymous said...

I'm so glad that annika is feeling a litle better that frankie is there with her.the pictures of them together and your words got me all teary eyed. hope you guys will get out of there soon. god bless you for having the strength to have another child. tabitha logans mom

12/11/2005 6:44 PM  
Blogger liz said...

What beautiful pictures. I love your girls.

12/11/2005 7:01 PM  
Blogger halloweenlover said...

I'm with PPB, I'm so happy to see these pictures and hear this good news that I could cry.

What beautiful girls you have!

12/11/2005 7:14 PM  
Anonymous Candace said...

This is so beautiful, thank you for sharing this. I'm crying from happiness, too, so glad that Frankie can be there with you.

12/11/2005 7:15 PM  
Blogger emme said...

When my son was in the hospital this summer, I am convinced that the single event that helped him heal was when he was finally allowed to see his little brother.

The pictures of the girls are amazingly powerful. Let the healing begin.

God Bless.

12/11/2005 7:20 PM  
Blogger moxiemomma said...

that frankie is some kind of magic. the girls look as beautiful as ever together.

12/11/2005 7:54 PM  
Anonymous Beanie Baby said...

Yay for Frankie!

I can't imagine how hard that separation must be, for all of you--and I haven't wanted to ask, for obvious reasons. I'm so glad to know that it's over, though, at least for now, and you have both of your little girls where you can see them.

Those two year old girls are wonderdrugs, eh?

12/11/2005 8:13 PM  
Anonymous Mary Lee said...

Wonderful pictures, I called my daughter into the room for her to look, too, as I have been pulling my family into your story.
Nora also picked at her lips until they bled post surgery. She was so dry and it seemed so involuntary. I think the pain meds, as necessary as they are, bring about some level of sadness that will lift as she is weaned off.
So sweet that she got some water for her sister when that is probably all she can think of wanting for herself.

12/11/2005 8:52 PM  
Blogger Running2Ks said...

My heart has just filled up--with joy at Frankie's healing power. My eyes are filled up too--with tears at the beauty of the reunion(for all of you).

I am glad the bleeding has stopped and that Anni is starting to perk up. She is an amazing pillar of strength in this ordeal.

I so much enjoy hearing about your family's love. I am happy to hear about these positive changes!

My thoughts and prayers are with you and your beautiful family. You are a fantastic mom.

12/11/2005 9:06 PM  
Blogger Sarah said...

Oh Moreena, you can just seet the love those two girls have for each other. Frankie is the best medicine right now! God bless her and your whole family. Prayers for all of you.

12/11/2005 9:07 PM  
Blogger Shelli said...

I am so happy that Annika seems to be doing better. She seems to have an attitude that is way beyond her years. And the relationship that she and Frankie share seems to be beyond their years and the normal bond that sisters share. It may seem odd to say, but you are really blessed to have two such beautiful girls.

12/11/2005 9:26 PM  
Blogger Jane Dark said...

Like everyone else, this makes me so, so happy.

12/11/2005 11:07 PM  
Anonymous Kim Faust said...

I have been checking in on you guys regularly. I am so glad that Frankie's visit brought some happiness to Annika's day. Her visit was a much needed boost for all of you. I am still praying for a Christmas miracle for Anni and hope, hope, hope they can figure out the bleeding and get it stopped so you can all go home. Gods blessings for Anni.

Kim - mom to Sami and Kyle

12/12/2005 6:32 AM  
Anonymous Anonymous said...

I shed a few tears myself this morning when I saw that picture of little Frankie in bed with Annika. It's so apparent how much they love each other. Having a sister that I a close to myself - I understand. I'm so glad you all were reunited - if only for a visit. My prayers continue and I am so thankful the medicine seems to be helping the bleeding.

I look forward to seeing the wish list!

Hang in there Moreena - our prayers continue for you all.


12/12/2005 6:45 AM  
Anonymous Robyn said...

What a beautiufl post. So glad the family could be reunited. It drove me crazy being separated from my son during Emma's hospital stays.

12/12/2005 7:07 AM  
Anonymous Anonymous said...

Nothing that all the beautiful people on this board haven't already said--just that my heart filled to see those pictures of Annika and Frankie together. Also the way you described "frolicking in the shadow of the hospital" really got me. How to live, and really be in, our lives, even in crisis. I feel like you're grappling with all of the biggest stuff, and all the time. Oh Moreena, you must be exhausted. I'm so glad Frankie's there now.

xo Catherine

12/12/2005 7:32 AM  
Blogger Laurie said...

What beautiful pictures of your TWO miracles! I'm so glad that Frankie is there to lift her sister's spirits. I bet seeing Anni helped Frankie, too.

Prayers continue!

12/12/2005 7:44 AM  
Blogger Phantom Scribbler said...

I don't think it's possible to see those pictures of Frankie and Annika together without crying. I'm so glad that you are together today.

12/12/2005 8:10 AM  
Blogger allison said...

So so glad to see their sweet faces together...still praying, hoping, wishing. For Annika, and for you and Jorg to hold up. For everything.

12/12/2005 8:31 AM  
Anonymous Anonymous said...

Yea! Yea! Yea! My computer has been offline for 2 days and I was SO happy to read your last post! Just SO very happy for you!!!!!!!!! Family is a gift from God. He is blessing you and Annika through your family! Such good news, such good news. Thank you God... through tears of happiness for your family. May the worrying health issues that still exist be brought to light and healed.

12/12/2005 10:01 AM  
Anonymous Rowan said...

I think I just exhaled a little. I hope you have been able to, too. What wonderful medicine love is! As everyone has said, the photos are wonderful.

I'm so glad that your family can be completely together right now. Your parents must be relieved & relieving, as well. I know it's far from the holiday you would choose, but it sounds miraculous, none the less.

12/12/2005 5:43 PM  
Blogger angela marie said...

Oh my God, Moreena. That picture of the girls together in bed is the most precious. I know that having them in their OWN bed would be better, but sibling love is something not to be understood or explained.

Christmas time is when I miss my brother the most and seeing your girls together gives me...something...something that I cannot begin to describe. I pray so very hard for you and your family. And another part of it is that it helps me to mourn my own loss.

Anni and Frankie will look at these pictures someday and KNOW that love is what got them both through it.

12/14/2005 10:38 AM  
Blogger Jessica said...

Oh, Moreena....the pictures of those girls together (esp. the look on little Frankie's face) just freezes my heart!

12/14/2005 3:54 PM  

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