Wednesday, November 25, 2009

I am EXTREMELY blessed to have the friends and family that I do. Dale, Tabitha and Amy Rex, Hallie Peay and my sister Julia have put together an amazing boutique to collaborate funds for Lulu's future medical expenses. I will be there for the whole thing, which will be amazing to see so many of you that have been such a support to us. If you have any questions or want more information you can look to Tabitha's blog-



Tuesday, November 24, 2009

(...why YES, he does.)

So backing up a bit...James was not going to be considered any further after his CT, because his liver was much too big for her. She'd have to gain anywhere from minimum of 3 to 5 pounds in order to receive his liver. That is a CONSIDERABLE amount for a baby with advanced liver disease. So they moved on to my sister Cydnee. She too was ruled out for both the size of her liver and her anatomy (like me) is incompatible with donation.

We were expecting the team to call Jordan (James's little brother) in today who had completed screening up to the point of the CT. They didn't and wont be. They feel confident that the combonation of being male (i.e. bigger livers) and his height (taller people generally have larger livers) they'd be looking @ a liver the same size as James. So, since there is no liver and LuLu is fairly stable, Dr. Book feels like it would be Londons best interest to share her Daddy's liver. **The deepest, most heartfelt thank-you to those willing and able to sacrifice so much in order for LuLu to get better. You know who you are, your eagerness and selflessness to donate is as if you DID in our book.**

Now we wait for her to gain and keep her as healthy as possible. She will be listed on UNOS as well. We hope it will not take more than 3 months to gain the weight she needs for transplant and that nothing forces the hand to do it sooner. Among many drugs and vitamins- she's been on and will stay on a profalactic antibiotic to help stave off infection- our biggest enemy.

I've had my hesitations from the start about James being the donor. Mostly selfish ones- like how could I get through this without him by my side? I imagine having to see him and London suffering at the same time and it makes my heart physically ache. Last but not least, worrying about our business and livelihood.

But on the other hand and most importantly it is what's best for London, so that is what we will do. The closer the genetic match the better- less likely for rejection. Since the scar cannot be on me as I would have liked I am glad that it will always be close to home. She can lift his shirt up, have him at the pool with the same mark of bravery and have that special bond that I know they will share because of it. I'll admit I'm a bit jealous but indeed grateful that she has a Warrior Daddy who is as relieved to have "found" her a liver as I am.
On our first date, where I fell hard and fast for Mr. Badger, he told me (mind you our first date lasted about 12 hours and we'd covered about every subject in the book) very humbly that he's always wanted to save a life...even if it meant him dying to do so. Like that was seriously on his "To DO before I die list".... I remember thinking to myself "please don't throw yourself in front of a bus or anything because I REALLY want to marry you". So, he gets to save his daughter and I get to keep my husband. Win, win.

So here's to not spending Christmas in the hospital and the answer to our prayers. Cheers! As a dear friend of mine would say.

Patience is a Virtue

"Roxy and Lulu"

I had always considered myself a patient person.

Then I was pregnant and had to wait 9 whole months to meet him...patience Liz.
Then I had that baby and realized I had a lot to learn.
Then I was pregnant again...had to wait 9 more months to meet her....
Then I had that second baby...thought that was real hard- to have 2, learned to be more patient.

Then my baby got sick...many Doctor visits, blood draws-heart ache, wondering, more patience. Hospital stays...patience. Waiting for results...a lot of patience.

Found out I wasn't a match for donation...patience...wait for it, wait for it...

Found out yesterday- James is not a match....patience Liz.

Found out this morning my dear sister Cydnee, not a match...she is so sad too. Patience.

Think about having to wait on UNOS, don't want to go there. It would be a very long wait. I don't want to be "waiting" for a baby to die, morbid thought for a mother.

I still have hope. Lulu has an uncle that is in the screening process. He's been chomping at the bit...what amazing families we belong to.

London luckily has another aunt and uncle that have initiated the process and a few close friends that are more than willing-so we're not out of options, yet. But as you can see the "right" liver is hard to find...I will try to continue to have patience.

If you don't know exactly what your liver does for me a favor and please look to the sidebar. Appreciate your liver. Appreciate everything in your body that works correctly. It is such a miracle to be healthy.

Thursday, November 19, 2009

A long day & longer night...

anxiously waiting....
Yesterday was my angio, still a chance I'd be her donor (50/50). I kept my thinking positive up to the second the surgeon came in to talk to us. We arrived at noon, did a lot of waiting. My procedure finally got started at 4:00pm, the angio lab looked space-aged and very sterile. I asked them to put on some music, listened to Bret Dennon as I got the good stuff, although I was singing Bob Marley in my head. Kept asking them for more and more of the sedation drugs in hopes they could turn my mind off for the first time in months and to possibly numb me for the bad news that might follow. The guy finally told me, "the procedure is over, we can't give you anymore" Darn.

The timeline is a blur but I remember my mom was there waiting for me when I got back to my room, just as she'd been waiting with me before I left. Dr. Vander Werf came in to tell us a very clear no, I don't have the right arterial makeup. It would pose greater risks to both me and London. My mom was sobbing, so was I. After he left I told my mom I was mad at God for not making me right, she said not to be mad at Him for long. I wasn't. I know I need to have more faith in Him. He knows better than I do where I can best serve London best and that will be by her side. I'd do anything for that scar, to give my child life-again.

But I will be able to send her into surgery with a kiss and be the first thing she sees when she comes to. I'll be what she feels day and night. Just like I felt the comfort of my own mom on this horrible day for me. Among the crying, being in and out of consciousness, I felt some peace...just before I became very nauseous and fainted. :)
Today, it all feels like a bad dream that I keep trying to recall.

I must look at the bright side and say I am extremely grateful we have other options. Jame's CT scan is tomorrow. If that is not optimal they have worked up our next 2 candidates who will be ready for CT's as well. Usually they do not work up more than 1 person at a time, or so quickly but we have a surgery date of DECEMBER 14Th. It is just around the corner, a few weeks away, 25 DAYS away to be exact. (yes, I'm freaking out) We hoped she would be 2 before we'd be talking "transplant" and now it is only 6 days after her 1st birthday. I guess the gift of a health is the best gift she could get.

Please check out Lulu's liver friend Eden who is recovering DAY 9 from her transplant at PCMC and looking B-E-A-U-T-I-F-U-L!

There is another adorable little girl Lydia that we met last week in Dr. Books office who will have a transplant in the months to come. All three girls have such a brightness about them. I told my sister Cyd about Lydia and Eden and she quickly called them the "Sisterhood of the Transplanted Livers"-very cute. I hope they will be special life long friends.
A HUGE thanks to Nana for watching Jones and Lulu all day, it's a comfort knowing they are in good hands when I can't be there myself.

Saturday, November 14, 2009

Home-sweet-Home (posted by Lizzie)

(pre NG tube)

Three weeks later and we are finally home, for the time being at least. London is so happy to be home! My deepest thanks to all those who cared for London medically and to all those who've cared for James, Jonah and myself in many other regards. We've had some highs, we've had some lows but for the most part we're just trying to hold on.

London's team has put more urgency on her transplant than earlier thought. We are now looking at the first part of December. I had to sit when I was told it would be so soon. January sounded better. London's workup to be listed on the UNOS registry was put on hold when she contracted H1N1. She hasn't been well enough to be put under anesthesia for an echo cardiogram, the last test before she is listed. Needless to say, I will soon be toting a pager on my hip, waiting for THE page that most likely WONT come, saying they have an organ for my baby. There are just so many people waiting. I can only imagine the agony for parents waiting for hearts or lungs, something they have no control over.

So, we very luckily continue with my Living Donor screening. The liver is a miraculous organ. My CT showed PERFECT size but less than ideal arteries for transplantation. I have an angiogram Wednesday which will give a much better look at my liver as well as a definitive yes or no to ME. I want it to be me, I feel like it is supposed to be me. I want us to have matching scars across our bellies. I want her to be able to look at me whenever she feels self-conscious and see how proud I am of my scar. It would be my favorite physical attribute. I want to wear bikinis together for the whole world to see that we are strong and both made it through something very difficult, together.

As much as James would like to be a candidate, he will not be screened at this time for many reasons, mainly to preserve our livelihood during this already difficult time. Being a small business owner doesn't come with any sick leave or paid vacation. There is no one that can run his company but him. The recovery time is 12 weeks before returning to work or lifting more than 10 pounds. As an entire family, we've decided it's best for our little family not to have James undergo donation screening at this time.*

Meanwhile, due to the timeliness of her transplant they have started screening/will start screening 2 other family members who are likely to be good matches and in the position to donate, if needed. They will be silent heroes for now as privacy is important during this time. Many people have sincerely offered up their own organs for Lulu, some "too old" by transplant standards, some not having the "right blood" and some with "hearts of gold" having no idea of what they'd really be getting themselves into. All of which we are extremely grateful for.

For now, we are adjusting to home life. Part-nurse, part-mom. Part-male-nurse, part-dad. ;) And SO lucky to have a NICU nurse Grandma that's been here around the clock helping us through. Thank you mom, I'll never stop needing you.
(*correction- after Lulu's apt. today Monday, Nov. 16th, James will start the testing tomorrow per the surgeon Dr. VanderWerf and Dr. Books recommendations. In case I'm not able to donate it would be the best thing for her to have a part of her daddy's liver. If that shoe doesn't fit we will move on down the list til we find one that does)

Wednesday, November 11, 2009

A Parting Gift for Lulu (posted by Lizzie)

(Newborn pic, credit: Allicen Waldron)
What was she given, you ask? H1N1.

So needless to say, hopelessness set in. It felt like a new nightmare. Luckily it was caught very early and immediately started her on Tamaflu, a 5 day treatment course. Meanwhile, the fluids in her stomach are creeping back up, requiring daily changes in dosages of her medicines. They also keep cutting back what she is allowed to take in by mouth to help control the girth of her belly. She is often hungry for a bottle during the day which I can't give her until specific times and in very small amounts. She will not eat any solids, not even Cafe Rio guacamole. It makes me not want to eat either.

Sweet Lulu doesn't complain much, though I know she is miserable. Her hobbies/pastimes at the hospital include being held, reading books, being held, playing with toys, being held and being held. She really likes sucking on her bink and being held, mostly by me. She is a mommas girl. I appreciate every minute with her. Just wish it were somewhere else.

Sunday, November 8, 2009

Day16 New Diagnosis (posted by Lizzie)

No Butt Syndrome (NBS) Little toad is so teeny, tiny that she officially LOST her booty days ago. It was the last thing to leave after her legs and arms shrunk to twig like proportions. Yes, it's always been little, but she had one-it was really cute and hard not to pinch if you ever saw it. If anyone finds it please let us know. Meanwhile we will look to medical professionals to help her create a new one via the IV nutrition therapy that she's been receiving 12-18 hours a day and will continue to do so until her transplant.

We are hoping to get our little London home in the next few days. Our house isn't a home without her and Jones misses her dearly. I've had the "opportunity" (that's what it feels like) to be mom to Jonah today while James is with sweet LuLu at the hospital. Thank you all for your continued support. We've really felt so loved by so many.

Wednesday, November 4, 2009

LuLu is lucky and loved! (by Lizzie)


After weeks of being away, Jonah needed to catch a glimpse of Little Lulu. So, we strolled her
out of her unit for a brief reunion. It was oh, so sweet.

Happy Girl

Auntie Marcae, Mommy to baby Kate. That's who LuLu got her middle name from. Little Kate passed away while I was pregnant with London. She was a beautiful girl that fought long and hard, much of it at PCMC with her amazing mom by her side. I love and respect Marcae with all my heart.

Daddy can always get her to laugh. He can get anyone to laugh. That's one of the reasons I am so in love with Mr. Badger.

Uncle Gavin & Auntie Jayma

Auntie Tellie...(took first shift on Halloween, then Uncle Jordan took the second so I could be with Jonah) Thanks guys!

Grandpa Barnum is so in love with this little lady bug!

Brad & Shelly (Chantell's mom and step-dad)
Corrine and Amy, London's transplant coordinators

Auntie Cydnee

Auntie Leslie
Angel Grandma

Aunties Hallie & Kathryn

Aunt JuJu. Big London fan

Nana Dearest
Thank you to the many wonderful people that have helped us in one way or another. We appreciate the prayers in her behalf, comments on the blog, emails, texts, phone calls and cards we have received. We feel very, very loved.

(scroll down to previous posts, new pictures have been added...)

Day 11

Isn't LuLu's costume cute?

Today marks day eleven at Primary Childrens Medical Center. Everyone was hoping London could come home yesterday, but she is a bit dehydrated, still has signs of infection, and her doctors are concerned about her weight. She tipped the scale at 13 1/2 pounds yesterday. They are constantly making adjustments to her TPN (IV Nutrition) to make sure they send her home with the perfect brew for her.

Additionally, LuLu's kidneys are not functioning well due to all the diuretics that are needed to keep fluid off her belly. They are making adjustments to her medications and giving her a blood protien through an IV to help them work more efficiently.

The days are long for Lizzie and LuLu in the hospital room. I'm sure home never sounded so good!


Monday, November 2, 2009

Primary Childrens Update

London is on day 8 at PCMC. Overall, she's gaining energy and is awake quite a bit. I even got a few smiles out of her the other night. The bacterial infection was controlled enough to be able to get her picc line placed. A picc line is a catheter that runs from a vein in her arm to her heart. It is being used to help meet her nutritional needs, i.e. to gain 3 lbs. It goes straight into her blood, bypassing her digestive system that has been failing her in that department. LuLu is hooked up to so many wires and tubes right now that it's a 2-person job to move her from her crib to your lap.

Lizzie took some pictures of LuLu in her ladybug costume on Halloween. Lizzie was able to "escape" long enough to take Jonah trick-or-treating in Grandpa & Grandma Badger's neighborhood. She slept at home that night with Jones while James stayed with LuLu. Jonah has had lots of fun going to see his grandparents, cousins, and aunts & uncles during LuLu's hospital stay. However, I'm sure he'll be beyond thrilled to get his family back home with him! James is burning the candle at both ends managing his company, picking up and caring for Jonah, and getting visits in at the hospital.

As I write, Lizzie is in her CT scan as part of the living donor qualification process. It will take 1-2 weeks to get her results back. Three specialists will review it for ideal branching of arteries and bile ducts from her liver. About 30% of living donor candidates get disqualified after the CT scan. Lizzie really has her heart set on donating to LuLu, so we're hoping for a good match.

Hopefully LuLu will be in the comfort of home the next time I post here. Thank you all so much for your kind words, deeds, and heartfelt prayers. Lizzie has told me over and over how much it lifts her spirits to be loved by so many. Now, let's all pray for LuLu to fatten up! It's so important to a good post-transplant recovery.



(edited to note: LuLu was maybe coming home today. However, she just started another fever, so she needs to stay a bit longer)

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