Day 20 We're going....

SWEET

"Why must my Mum put me in bows the size of my head?"

This is me telling London that we will be going home....

for a little while anyways.

This is London being so overcome with JOY and EXCITEMENT!!


LuLu is as stable as someone could be under her set of unfortunate circumstances, so we will go home today. (Yay.) And wait however long, until we are told to come back. Seeing as though I have become an honorary nurse this last year..I can do everything at home that they are now doing for her here. So we might as well be there. A family again, for a little while. Until we do this whole crazy thing over with a "new-to-her", whole liver for our little LuLu. Only God knows when that will be...we have no idea, but are told sooner than later with where she stands with UNOS.

Day 18 & 1/2

It's the middle of the night and I cant sleep. LuLu is in Neverland, hopefully dreaming of fairies and puppies and horses...good things that would make a baby girls subconscious happy.

I just feel bothered, unsettled. It could be many different things, because at every given moment my (our) life feels upside down and inside out. Torn in different directions- I'm either missing Jonah on weekdays or missing Lu Kate on weekends and at all times missing my husband. I do see him most days but it's relatively brief. I don't get to fall asleep with him or be kissed by him in the morning before he leaves me for work and I miss that a lot. Our poor dogs are a bit neglected but at least they've got eachother and free reign over the whole house.

What IS presently bothering me is that no matter how you cut it, we are waiting for a baby to die. I'm not wishing for it, I'm not wanting it, but it will happen. For months our plan had always been to have a live donor I didn't really have to think much about this. It also made me glad that we may be able to free up 1 more liver for someone waiting for it that couldn't have a live donor.

I know logically that people die, children die, babies die. Their dying is out of my control. And I am beyond grateful that we have the knowledge, medicine and incredible doctors to create such miracles out of death. When I am having to explain our situation to a kind curious nurse, or neighbor, or friend my throat starts to close and I struggle for air. I get this burning, tightening sensation in my throat and I cant get words out, tears start to stain my face. And I have to stop talking about it. I am thinking of my girlfriends who've lost babys and it's hard to think of benefiting from a loss like theirs.

I am grieving for that family, whomever they might be, where ever they are. I wonder if their child is chronically ill or if the death will be something sudden and they will still make that difficult decision to give life despite their own loss. I will greive for them while Lu is in surgery, receiving the gift they gave. I will grieve her whole life for the babys life that was lost, all the while having gratitude that London was made whole.

I will be sick for that mom that wants to die, because her baby is no longer in her arms. I would want to die too. And that is why I feel heartbroken tonight and every night as I lay thinking about this wonderful yet horrible process of organ donation.

Now I am very tired and ready to fall asleep, I hope.

Day 18 Kysha

LuLu was very happy to make friends with something furry and four legged tonight. This is Kysha a therapy dog. Her cute owner Stacey comes up Sunday nights to share her pup with thoses in need...:) London loved her. See you next week Kysh! I thank God for dogs.

Day 16 The Stocking was hung in her hospital room with care, in hopes that a liver soon would be there...

Jordan. Better known as Uncle JuJu in our family. (we can get a little tongue tied with JuJu, LuLu and LaLa (Linden) )

Jonah, Christmas morning with LuLu's tree. She was missed by him.

The beautiful scarf and hat were made by my sissy Julia, but given to her by Aunt Cydnee
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Christmas was wonderful. James's Aunt Mary Jane (recently dubbed Terri, short for Mother Theresa) insited on staying the night with LuLu so we could do Christmas morning together with Jonah and family. Hesitantly but gratefully I accepted her offer. We had an amazing day. Presents at home. Gifts given and gotten at Nana and Papa's as well as Grandma and Grandpas house. Good food all day long and lots of family that we love so much. Spending consecutive hours with James and Jonah together was the best part of the day.

James and I went to be with London in the afternoon and she'd had gifts dropped in all day. Santa, and his elves stopped by too. Lucky girl. I got to love her, open the gifts we hadn't already delved into the last few weeks and called it good. James is on weekend LuLu watch and I will RELISH in Jonahs love at home.

I tucked Jones into bed, after a little questioning- I was happy to hear he knows the meaning of Christmas and whos birth we are celebrating. We talked a little about Jesus after praying to Him and called this a very good day- all things considered.

Day 15 Good Morning Mum

Good Morning Mum! Get me out.


(you should have seen the back....)

"Mom- do my hair already...this is a bit embarrassing."

It's hard to believe it's Christmas Eve...in my mind the only thing going on is here in the hospital with London. But a big part of me breaks that I'm not with Jonah at the moment. Although, I have imagined a lot about what our next Christmas will be like and it makes me weepy. It will be amazing and beautiful, full of joy and family and friends and presents and great food and snow and music and decorations and Santa. It wont be spent in a hospital, it wont be tied to tubes and cords. It will be at home. She will wake up Christmas morning with her brother in our home sweet home. But we will never forget what this Christmas was like and what it has taught us. We will always keep the real meaning of the season at the forefront of our minds and in our hearts. I will always think on Christmas day about the other mums, dads and little ones that are spending the holidays in the hospital and I will be sad for them, say a prayer for them and hope they know that their next Christmas will be better than the last.

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Although many are hoping for a Christmas miracle, a "Liver for LuLu"- I really hope it doesn't happen on Christmas. I cant bare the thought of another family losing their child this day of all days. For the most special holiday of the year to be forever tainted by their loss. London can hold out - she is doing okay. Count your blessings as I am (trying) to count ours. Merry Christmas Eve!

Dont Worry, Be Happy

The "great" Dr. Book

Lulu's door decor (double click picture to look closer, if you'd like...)

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We are patiently waiting for that call. We don't know when it will be. It could be in the middle of the night, perhaps Christmas morning or even weeks away. Lulu is stable enough right now that we can afford to wait for a bit, and that is what we'll do. I am still in a bit of grieving mode about it- knowing when we do get the call it means someone else's baby has died. It's a hard thing to reconcile, but indeed miracles come from this sacrifice and often families find peace and comfort in knowing their child helped many others live, my child included.

Day 12

"It was an accident mom..." and it really was.

Good news- London's kidneys have been coming around. Stopping the diuretics and antibiotics gave them the break they needed and her renal function is improving. The downside of her decrease in diuretics is an increase in swelling body wide and fluid in her belly.

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I spent the weekend at home with Jonah, we both enjoyed every minute. James was on Daddy duty with London at PCMC. Jonah has been granted clearance to come onto LuLu's unit. They both lit up when they saw eachother. They love eachother very much. It's amazing to me that at the ripe age of 3 he doesn't resent her with the situation he finds himself in, being without a Mum much of the time and knowing it's because she is sick. He's a good boy.

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Uncle Jord has continued almost daily with different tests. He is looking like a promising candidate as her living donor. Her doctor is hoping she can wait for a good offer from UNOS as it is likely in the very near future. It would be best not to put him through this surgery if it isn't absolutley necessary. It is major to say the VERY least. So, they will have him ready and waiting in the wings...he will be her secret weapon, her last defense. She loves him, the way she looks at him- I really think she knows what he is willing to do for her.

Lulu's friend Lydia

Below is an email I received from LuLu's liver friend Lydia. (well her parents that is...) there are a few easy steps below that can be taken to help her parents win a contest at her daddy's work to earn $1,000 dollars that will be put towards her upcoming transplant. It's free, easy and safe. I know her mum personally and know this is legit. Please take the time for her this holiday season, it will take 2 minutes. Please pass this info along to your friends and family (cut & paste) through email...it would mean the world to LuLu! Thank you!!

Dear family and friends,

This year has been a trying year for us with our daughter Lydia. She is in need of a liver transplant. This will happen most likely in a few months.

The company I work for, called NexOne, is sponsoring a fun Christmas/ New Years challenge that ends on January 15th. The winner will recieve a cash prize of $1000. Right now we could use this money for help with the costs of the transplant.

For us to win this challenge between all the NexOne employees, we need to get the largest group of friends to register at a website called www.wishteller.com and either send us an ivitation to be their friend or accept us as their friend.

Wishteller.com is a website that was setup by my company just for this challenge. This is a completely legitimate website. All you have to do is register a username and invite me to be your friend or accept Brian Christiansen as your friend.

We would really appreciate if you would help us by forwarding this message to your friends and family for us and CC me on that email at cleadbc@gmail.com.

If you want to contact me my email address is cleadbc@gmail.com and I can give you more information.

Instructions for registering:

1. Please go to www.wishteller.com and click “Register” at the top of the page.



2. Enter a new username, your birth year, a password, and your email address. Then put a check mark in the “I accept the Terms and Conditions” field. Then click the “Create account” button.


3. Click on "ADD NEW FRIENDS" under the Quick Menu.


4. In the search for new friends search box just put in my name "Brian Christiansen" then click on the search button.


5. Then click on the "Invite" button next to my name.


6. I will accept the invitation as soon as I see them.


7. You are now done you can then close the webpage.

If you have problems email me at cleadbc@gmail.com.

Thanks,

Brian and Janene Christiansen (Layton, Ut.)

Liver Failure

Getting some loves in with Sleeping Beauty

The vanity of this girls mother...

PaPa Bear

Tabby, Leslie, Hallie & Chantell (missing) came up for some delicious hospital food. Great laughs were had and I forgot for a few moments what was going on in my life. Thanks ladies.

Great Aunt Mary Jane,(PaPa's sister) a frequent visitor and special friend to little LuLu. London even let her borrow a bow for this picture.

A lot can change in a weeks time- and it has. Without including very many details we are now at the top of the list on the UNOS registry (United Network of Organ Sharing). We went from a score of 12 last Thursday to a 40 today. The scoring goes from negative numbers (meaning healthier livers) up to 40 being the highest/most urgent for a transplant. So, there is a chance we could get an offer at any time. Her kidneys have been taking a beating and the little beauty is very uncomfortable. There has been talk of dialysis but we are hoping with medication changes they will turn around a bit on their own.

London's team doesn't feel like James's liver size is going to be a good fit now that there is such urgency. So they have resumed testing with Uncle Jordan in hopes he may be a better match with a smaller liver. His willingness is incredible. James has felt the same blow I did when I was told I couldn't donate. The same blow my sister Cyd did when she was told she couldn't donate. He was so ready to do this for his girl. He hasn't been completely ruled out but are putting him on hold until they check Jordan out completely tomorrow or possibly wait for a "good" offer. This is a roller coaster, to say the least.

Dr. Book is hoping for transplanting next week if Jordan is a good match or anytime day or night if they accept a cadaverous liver that becomes available. As I've said before- very mixed feelings. The best offer would be a compatible liver from a baby and it is incredibly hard to think of another child dying in order for mine to live. I have the utmost respect for parents that make that decision to donate in their darkest hour. I know without hesitation I'd now do the same, God forbid. It's a hard thing to think about- but think about it yourselves and what you'd want to do if you ever found yourself in that situation. One person can save up to 8 different lives as well as dramatically improve many others.

For now I must get busy making preparations for Jonah, who will be floating around the valley for weeks following her surgery-as he has been this last week and every other hospital stay we've had. I want for him to feel as secure and special as possible as James and I wont be around much. This has been hard on him too. When Jonah woke up last Thursday to no Mum or Lulu in the house, James quickly told him I was Christmas shopping rather than at the hospital which he was very happy to hear. So he thinks I've been shopping for a week straight which he's been very pleased with until today- he told me to stop shopping, no more presents. He wants me home. Other than this little white lie, we have been very open with him and he knows quite well whats going on. The other day our friends, the Woods had him and here's how a conversation went:

Gavin: Jonah, what do you want for Christmas?

Pause, hesitation

Gavin: Do you want Transformers?

Jonah: Yeah, Transformers....

Gavin: What does LuLu want for Christmas?

Quick response

Jonah: She wants a liver, cause hers is dirty. They are going to cut her open- take out her dirty liver and put a clean liver in.

Bless his 3 year old heart.

I've never put it in such words, but the boy is smart. Gavin was blown away. Although I had been training him to say what he wanted for Christmas was a liver for LuLu, hence the delayed response. Maybe he didn't realize he had any other options. I will be sure to get him a Transformer.

We are nervous and excited right now and pray for the safety of London and her potential living donor as well as families that are having to let go of their loved ones and sparing the lives of others.

By no means is this road going to be easy but it will be the start of a better life for London. I can't wait until she has the desire to eat. To crawl. To walk. To talk. To one day dance. Cheers to modern medicine.

FUN night...a SWEET cause

LuLu's beautiful, amazing, hard working, tender-hearted, funny daddy!

Josh, one of James's best friends since childhood. Funniest kid ever, and he's single ladies!!

My dad's best buddy from South High, Pres Miller. He's one of the church leaders and I imagine he had a thing or two to do with this night being for London. He is a tender man. He hasn't been able to hug or look at me for months without tearing up. I love him.

......and his beautiful, lovely, equal Sandy- parents to the boys so willing to strut their stuff for a good cause. (read about it below) :)

........doing the Hokey Pokey......and liking it!

We were "informed" last week that the singles wards (church group) in the area James grew up in were doing their Christmas dinner charity for our little Lu. It was such a surprise and again, very overwhelming that people are thinking of our little baby and trying to make our lives a tad bit easier right now.

We left LuLu in good hands with her PaPa at the hospital so James and I could be in attendance. The night was a lot of fun. It was held at the Marriott Hotel by the University of Utah. The night began with a silent auction that was filled with items donated by the people in attendance: swimming lessons, basketball lessons, home made treats for a year, jewelery, drawings....... and on and on. There were a lot of creative items/services up for grabs.

Dinner was delicious, the ambiance beautiful and the entertainment, great. There was a comedian during dinner followed by a live auction done by a "real" auctioneer. These items included flights, horseback riding, blind dates with HOT Cougerettes (dancers @ Brigham Young University), a segment on the news featuring the highest bidder making them look really "cool and interesting" and even pole dancing lessons! I think my favorite was a day at the lake with the Miller boys in Speedos (2 hot brothers) including: boating, tubing, jet skiing the whole 9 yards. The night concluded with karaoke where the church leaders had to sing and do the Hokie Pokie (someone bid like $300 bucks for them to do so) and many others lined up to sing their hearts out.

Many thank-yous to all who were involved, planned and in attendance. Your love and support were definitely felt. Again, our morale boosted.

Handmade "Livers" at etsy.com (posted by Julia)

etsy.com is a website for handmade artists to sell their wares. I recently searched for handmade "liver" items, and this is what I found...

"Large Liver" Monster. How cute is he?
http://www.etsy.com/view_listing.php?listing_id=19431204

The "Liquid Cure Necklace" would be cute for LuLu, minus the little martini, of course.
http://www.etsy.com/view_listing.php?listing_id=34436860

This is "Lilly Liver". Her description says:
The caretaker of your body, Lilly is the ultimate multi-tasker!

Performing over 500 functions in your body, Lilly loves to clean house (or body, as it were).

She will come into your life and detoxify your body and aid in digestion.

Lilly is the only organ in your body that can regenerate! You can lose up to 80% of your live and, within a year, it'll be as good as new!
http://www.etsy.com/view_listing.php?listing_id=24582627

Meet "Happy Crocheted Liver". She's anatomically correct, complete with arteries and ducts.
http://www.etsy.com/view_listing.php?listing_id=19930329

This "Organ Donor Awareness Bracelet" was made by a liver mom. Her daughter has had two liver transplants. You can click on the link to read more about them.
http://www.etsy.com/view_listing.php?listing_id=36868782

LuLu's Boutique

Our morale continues to be boosted by so many in our lives. People that win the lottery have family, friends and complete strangers come out of the woodwork wanting something...well, it's been the same for us- so many people appearing, but they have all come to GIVE, SERVE & LOVE, wanting nothing in return. We are a very lucky family.

The boutique was a great success and so much fun. I saw friends from high school that I haven't seen since my days as a Spartan as well as many I didn't know that follow London's blog and everyone in between. Thank you to all that helped make this night what it was, in particular Tabitha, Amy and Hallie. You ladies are the best!

PS Borg Girls...how did I miss a photo-0p with ALL of you there?? My thanks to all who were able to come!