Wednesday, January 27, 2010

Battle Wounds and Butterflys


This is only one appendage, they all look this way from multiple IV's, but no one's complaining.

Broviac, same as what her Picc line did before the surgery. This is more permanent...


Where one of a few lines were placed for surgeries.

Thank you Miss Eden for the beautiful BUTTERFLY bow. I learned something new with this gift...butterflies are actually an international symbol for organ donation. How very poetic. London has been taking off the last few days with her new liver. We are finally seeing her fly.

I can hardly believe it had only been 10 days post transplant and only 5 days post closure surgery when these pictures were taken. She is getting VERY little morphine or anything for pain and is as happy as can be. Resilient little bug.

Even a little Peek-a-Boo being played already. This is a first of many firsts London will experience in her second year of life. Can't wait for every milestone she'll hit now that she will be feeling like a new baby. Spread your wings little girl!
***LuLu is still on very strict visitor restrictions and will continue to be for coming months. Though we would love to welcome the many friends and family that are dying to see her, she is at the HEIGHT of her immuno suppression and every body that walks through the door increases the risk of her becoming ill. So after strong advising from the Queen Bee of livers- Dr. Book we will continue to limit visitors to Grandpa, Grandma, NaNa, PaPa and Gangey Janie. I'll continue to do my best with lots of updates and many pictures of the beautiful little bug, I mean butterfly...***





Please know how much I love the comments, texts and emails I've been receiving. If you don't hear from me right away, my apologies- but know they don't go unread or unappreciated. I get the comments from the blog to my phone as well as emails all day long and they are just one boost of many I feel daily. Thank you!
xoxo
Liver MuM

19 comments:

Heather and Kade Scott said...

Liz,I am so happy for Lulu, you and your family. She is looking absolutly beautiful as always and it is awesome that she is doing soo well. Sending tons of love.
PS. Kade prays for Lulu everynight and has had his class pray for her also. (He goes to a private catholic school)

AshleyS said...

Lulu is such a gorgeous baby! I thought I'd tell you about my Hailey's prayers at night before bed, over dinner, before naps sometimes, etc. She insists on saying them all by herself and without fail every time she says, "Bless Baby Lulu and The Rich (Rich is a family friend battling lymphoma). It is so sweet, I hope our girls can be friends one day! :-) So happy that recovery is well on its way. Loves!

Lisa Cannon said...

Her poor little body! She has gone through so much. It's just up from here. We should meet again at Bouncin' when she can run around without her walker :) So happy that she is doing so well!!!

Amanda said...

Beautiful. :)
-Amanda Scott Skowronek

Rachel said...

such a beautiful little girl!

Emily A. Merkley said...

Liz... nothing makes my day more than checking your blog and seeing sweet little LuLu smiling! There's no better thing! love you guys!

April said...

Even with all those battle wounds she has such a sparkle in those eyes! She looks beautiful and I am so happy for you and your family. Thanks for all the posts...I love checking in on her!

Anonymous said...

Can't wait, can't wait, can't wait to kiss those cheeks! She is making the same face Jonah used to make when she is looking down and showing off those beautiful eye lashes. Absolutely in love with her.
Love, Mrs. CL

mearle said...

Liz,

I'm sure you've probably already seen this website but I found this little article very inspring and hopeful. Lulu's looking ready to go home!
http://www.alpha-1foundation.org/alphas/trine

love, michelle

Rachel S. said...

I have been following your blog ever since my cousin posted a link to it on her facebook acct. Her name is Jasmine and her daughter Kai was diagnosed with biliary atresia at 3 months and recieved a new liver at 4 months from her father. It is so great to see Lulu doing well. She is beautiful. praying for a full recovery. Kai is now a thriving, gorgeous toddler!

Jo Lynn said...

wow, what a trooper she is!!! I love the many pictures of her playing with her favourite tissues and how wonderful to see her up and so happy!!! She is such a doll and I love her new butterfly bow, how perfect for baby lulu! So happy to hear she's doing well and those are battle wounds that will forever remind her of what a brave and strong little girl she is!!

Courtney said...

London looks great! Love the Peek-A-Boo pictures. I am so glad to see her doing so well.

Willy Happy Mama said...

Wow Liz! Her coloring and sparkle to her eyes is really improving! She looks happier with every post. What a doll! We are so happy she is healing so quickly.
Julie :)

RN 4 Kids said...

good job restricting visitors...RSV is starting and she does not want/need that.

Julia said...

Love the pictures. I miss you guys..feeling way out of whack without seeing you, James, LuLu, and Jonah on a daily basis.

London, I love you! I'm so proud of you, too.

Auntie JuJu

Dayton and Candice said...

She looks absolutley great!! It's alomost like a different look in her eyes!!And on a little side-note--Her eyelashes are well like big butterfly wings!!! Ooop gotta run, sounds like Big bro Dax is torturing Cam again........love you!

Alisha said...

Sheena Rasmussen directed me to your blog. Just wanted to drop a note to let you know you are an amazing woman with an amazing family and a BEAUTIFUL, RESILIENT little girl. Best wishes!

April said...

I was looking back on past blogs, Lulu is looking cuter and cuter and more healthy, so happy to see that!

Cheers to a better year! It has been a better year already!

Rogers Neighborhood said...

I love you all. I am sooooo elated to see Lu looking so well. I work this weekend so hopefully I can come visit.

 

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