Saturday, May 29, 2010

Big Shoes to FILL

No, not mine-- although those are my running shoes. Of course I mean Ashley, our donor. She was only 12 when she died but she was so good and she was wise and she was smart and she was kind and she was beautiful from the inside out. She was so beyond her years it's incredible. She had an undeniable spark.
Every parent wants to do their very best by their children. Raise them right, turn their good little ones into good big ones. I want nothing more. I hope LuLu will be much like Ashley. I hope she will have a deep love for animals because a good heart is not far behind and care about the weak and friendless like Ashley did. I feel pressure that is hard to explain, my daughter is alive because someones daughter isn't. I think about this everyday. LuLu's liver MuM just sent me a picture text of Ashley's sisters, Abby and Sammy. It was taken from behind, the sun setting in front of them. It was peaceful and beautiful and so very Vernal. I was sorry that Ashley wasn't sitting next to them. There was room for her in the frame. I'm sure Camie thinks that every time she snaps a shot. Some days this makes me so sad I cry while I'm vacuuming, folding laundry or catch a delicious glimpse of LuLu laughing and playing. I'm crying for what they lost and for what I gained. I remember that so many people are missing Ashley while we are devouring LuLu. A day will never go by where I wont recognize Ashley in our lives. Camie and I never end a conversation or a text message without an I love you. And I do LOVE her. And I do LOVE Ashley's Dad.
God knew we needed each other to get through this. That is why the stars aligned as they did so we could meet just days after LuLu's transplant and Ashley's death. What nobility these parents and loved ones of donors have to give life when their loved ones couldn't be preserved any longer. And what a responsibility us parents of recipients and recipients themselves have of living lives worthy of that sacrifice. It is both a burden and an inspiration to me at the same time
Fill those shoes LuLu. Fill those shoes.

alpha1-liver mum

Wednesday, May 19, 2010

Challenge accepted.

See this:

Bravo, well done. Thanks for the laugh, needed it today.

alpha-1, liver mum

Sayonara PCMC...til tomorrow that is.

New trick-head stands. Hate that it's on the hospital floor...but, what can I do? Whatever floats her boat at this point.
London's scans went well today (hooray!), no blockages. Blood flow, kidneys, spleen, LIVER all look good. Q. Book is chalking her liver inflammation to the Epstein-Barr virus. So they will let us leave today, with another medication (Valcyte) to control the EVB as well as lower her immunosuppressent drugs to help fight the virus. We will go back to the hospital early in the morning for more blood work and she'll be followed closely (as always).

Dr. Book is so amazing. She is always calm, cool and collected. She always knows what to do and how to do it and how to get it done quicker than anyone else could. I have such respect and love for her and her team. We couldn't have been placed in better hands than hers. It will be a sad day in Utah for liver families when that woman retires. I declare a Holiday called Dr. Book Day--I'll let y'all know when it is and what to do...Sometimes the only peace I can find in all of this and what is ahead is that she will be there to take care of us.

alpha-1, liver mum
Congrats Harmonee on being so brave and strong. I can't believe these tiny little bodies with huge spirits can endure so much. We are SO proud of her and can't wait to see the new life her new liver brings.

Tuesday, May 18, 2010

She's not a reject! ;)

...I already knew SHE wasn't but her liver isn't rejecting either. (don't think I've used that horrible term since 7th grade) So now we just need to find out what IS going on with her liver. Really, I should say "their" liver. I'll always think of it as Ashley's too.

The biopsy showed inflammation/hepatitis which isn't a good thing. Tomorrow she'll have more testing, an ultrasound and venogram. This will give them a good look at her liver and check for clotting where her and Ashley's veins connect. I don't have a lot of information right now but am looking forward to rounds tomorrow so I can pick Q. Books amazing brain. (or whichever amazing GI Doc Brain is on service) I'm relieved but also scared. I wanted her cold a few weeks ago to be the last thing to get her down, for a while at least.

My Mum came up last night with her overnight bag and forced me home to sleep in my bed with my James. I fell asleep to him rubbing my scalp and tickling my back. It was so strange to wake up together in a house without our kids. One at NaNas the other at the hospital. It's still weird that this is our life. I am grateful for the good night sleep I got and for the cozy cushion my Mom left behind on my chair-that-converts-to-a-tiny-bed at the hospital. She is to me what I am to Lu and Jones. Their comforter, their best friend, their number one fan, someone who will love them no matter what. I can't believe I am THAT to two perfect little humans of my own and my Mom is still that to me 29 years later.

My Mom went through a lot to have me. I caused severe complications during her pregnancy that were life threatening to her and more so during delivery. Her Doctor highly recommended she abort me several times and save herself and preserve the family she already had. She wouldn't. He wouldn't. My poor Dad having to face the possibility of being a young widower with 5 kids all 18-months apart and losing his sweetheart. They didn't even flirt with the idea, her Doctor probably thought them crazy. They had faith it would work out and she already loved me enough that she would have died trying. They were willing to sacrifice so much to bring me into their family. I can understand now being a parent myself. I would sacrifice anything, myself included to save my family. That is why I was so hurt when I couldn't be the one to save LuLu and give her MY liver. Moms want to make things better. I just want to make her better.

So, my plan for now is to buck up--face a few more days in the hospital with London and many more hospital stays in the future. I'll be happy to be here and stop mourning what I'd really like for us to be doing. I am her Mum and will continue to do whatever it takes. We have HER. It's amazing.

She doesn't nap well in the hospital. I know, go figure. A well lit, noisy room with people coming in and out and me sitting here trying not to make eye contact doesn't scream "I want to go to sleep" for a one year old. So after a few hours of her pittering and pattering in her metal crib I decided to climb in with her. It was a beautiful experience. After many little fingers up my nose, in my eye and trying to pry open my mouth she finally settled down and I got to sleep next to my baby, who will not be a baby much longer. And what if she's my last baby? I've always wanted three but as I've learned life doesn't always go as planned. There are a lot of logistics for us to now think of with having a third. So for now I'll savor her as if she were my last but hope one day she will be a big sister.

More news tomorrow, hopes to get to the bottom of this.

alpha-1, liver mum

Monday, May 17, 2010

Knock on wood

Seconds after finishing my post yesterday my phone rang. Caller ID said it wasDr. Book. I couldn't wait to say "I was right about clinic today, ha, ha, ha, ha, ha-ha" to our nurse...I know, I'm so mature. After I told Corinne and she lovingly gave me a courtesy laugh, she said "well it's a very good thing you did come in today to do labs". My heart dropped to my big toe. Tears already flowing. No. No. No. No. Whatever she was about to say...No. I can't do it. My poor Lu, we can't do it. We can't go back to the hospital, we just got out. There can't be something major wrong, we're just barely on the right track. She SEEMS just fine.

She said her liver numbers are very alarming. I am sobbing now. I walked out to James in the kitchen. All he sees are my tears and knows something is seriously wrong, he just doesn't know what. I am on the floor at this point, my legs wouldn't hold me up. We needed to hurry back to the hospital, there would be a room ready for us (bypassing the ER) and she'd be getting a liver biopsy done tomorrow. Her liver enzymes should be around 60, but one was 700 the other over 1000.

Fast forward to the present moment. London is positive for a virus called Epstein Barr which could be contributing to the elevation in her liver numbers but the only way to know if it's in combination to rejection is the liver biopsy. She just got out of surgery and is recovering well from the anesthesia. We'll hopefully have results in the coming hours from her biopsy.

Dr. Book calmed me last night. We don't even need to be thinking about another transplant. They can most always treat rejection. The EB will be monitored very closely and be treated with antivirals. Again EB is no big deal for the common population but for a liver transplantee and immunosuppressed baby it's dangerous and will be treated seriously.

So for now we wait. I worry and am exhausted. I want off this roller-coaster. I don't want have to worry about London every day. I am sad for her and for what has been her normal life. She hasn't been to the zoo, has been to a park once (and got sick after) and rarely leaves our house unless it's to go to the hospital or to stay in the hospital. She's been to few family functions, and is a novelty to her cousins. I know it will get better and easier...I'm just ready for that to be now.
lizzie downer ;)
alpha-1, liver mum
ps Harmonee is still in surgery, it's been a long, rough night but she is persevering.
pps Ragnar relay is a month away...whenever I get serious about training for my 13.5 miles that I'll be running, we end up back in the hospital. New method of training- James will drop me off 10 miles away from home and I'll make my way back. :) Do or die at this point. If we weren't running for "Donate Life" I'd probably have forfeited by now.


After 2 blood draws, trying to eat some berries....

Wonder who did this....??

DEEP BREATH. Got up late this morning. Luckily my barking dogs did what my internal clock or alarm clock didn't. I might have slept all day. (sigh, that would be nice) I was 15 minutes late giving London her Prograf. Bad Mum. Jonah is still sleeping, so here's the plan-finish meds, get LuLu's milk-pump-a-pumpin', get her some nibbles that she probably wont nibble. (lately she seems to not need to eat or drink, ever) then I'll wake Jones up to get him ready for Preschool, feed and water him while getting London ready for her clinic appointment at Primarys, where I'll go straight to after dropping Jonah off in Murray by our old house for his school, (opposite ends of town) after the hospital I'll dash straight back out to pick him up (hopefully somewhat on time), somewhere in the midst of all this I'll brush my teeth and get myself ready-eating would be a luxury I'll do without this morning.

LuLu wouldn't eat but played in her food and made herself a big mess, there's no time for a bath. She likes to use her morning strawberries (or anything else on her plate) as a phone-which is adorable but makes for awfully sticky hair. Luckily, she has a the trusty tube down her nose as a backup which has been more of a primary feeding source lately. Jonah was Jonah, cute and sweet...but slow as can be. I sounded like a broken record all morning, he probably gets sick of hearing me rush him along too, that is if he's even hearing me. Maybe I need to get his ears checked. Put that on my list.

LuLu pooped right after I got her in her car seat so five more minutes lost...can't be mad at her. We all poop. Her timing is just always bad. I'm getting later by the minute but am finally on the freeway with no phone- I left it in James' truck last night. Can't call Miss Joy to tell her we are running late, can't call the hospital to tell them we are running even later. My gas light is on. How long has that been there? Pray to the Gasoline Gods to just let me get to the hospital before we run out on the side of the road. I then got pulled over for speeding. More time lost. Shame on me I thought as I looked at what was in my backseat. Embarassing. Who cares if we're a bit late?-slow down, I remind myself. But let me tell you.. being late to clinic, making Q. (short for Queen) Book wait is comparable in my book to being late for a job interview. You just don't do it. It provokes such anxiety in me. I value her time, I'd never want them waiting on ME. Mondays are VERY busy with clinic and if you make them behind, you make a lot of other people behind too.

I arrive, 25 minutes late and check in, I wanted to put a bag over my head--the waiting room is packed. I fell asleep standing up for a bit, then snagged us a chair. I was greeted a few minutes later by Natalie (clinic coordinator, and sweetest person ever) saying they didn't have us on the schedule. (all this for nothin'? I am thinking, fight back the tears LIZ) We tried to reconcile the mix-up and she offered to squeeze me in to be seen. THANKS, but NO THANKS. I don't feel London is in any imminent danger and we'd be waiting forever. I decide we will just do labs and they can review them and we will reschedule to be seen. So, I go down to pre-register for labs and the lady asks me if I'll be seeing Dr. Book as well- "no, not today" I say, she doesn't need to hear about the mix up or how my days been going thus far. "Well, I have you down for seeing her at 11, you should already be up there." My day planner never lies. I explain to her now there was a scheduling error and I'll just be doing the labs.
So we're off to the lab, more waiting. Trying to breathe, ZENness Liz, keep it together Liz, center yourself a bit Liz. I still have a long day ahead. We go back for her blood draw, she knows where she is and what's about to go down. The woman sticks her arm, nothing-no blood. It didn't even look like she was anywhere near a vein. She fished around for a few minutes as Lu is crying and fighting for what she must think is her life, looking at ME as I'm holding her tight in my arms trying to sing our song over her screams. Please pull it out lady, try again. It might have been her first day. I am always extra kind and understanding when someone is learning...but it's hard to be patient when your child is suffering because of a lack of expertise. I kept silent, was nice. Second try in her hand-- no blood. Bloody hell, please get some blood soon or I will cry. She hit the button for some back up and finally drew some blood back all the while London is watching my face as she screams and I'm worried her tiny arm is going to detach from her body like my Barbie doll's use to. There were 3 of us holding it as her body thrashed.

They were preparing for a third stick and I was preparing for an anxiety attack as they caluculated they barely had enough to get by. Thanks to the blood God's for that. I would have like to have seen Farrah and Harmonee but I had to get out of the hospital and AGAIN-I didn't have my phone to call her, I couldn't have gone into the PICU with Lu anyways and I would barely be getting Jonah on time as it was. So off we went, fingers crossed again that we make it to a gas station in time. I just wanted to call someone who cared. Which would be James so I could complain or laugh or whatever...but I couldn't cause I didn't have my PHONE. I made it to Phillips 66 and what do you know? They had a payphone that was half way pulled out of the ground so I'd have been surprised if it worked anyways. I started filling up my car and even though it was just several steps away, I took my keys out and locked the doors (windows down of course)- I had flashes of being on the evening news. "Carjacked with baby in the back seat...needs medication ASAP etc etc. AMBER alert etc. etc." No thank you, not today. So I watched my car as I put a DOLLAR in the phone for a local call and called my better half.

The phone was dirty (dirty, dirty), didn't work well and I was limited on time anyways so our conversation was brief and to the point. I word vomited, he listened and loved me. He did give me some really good news though, he got word (since he had my cell) that Harmonee received a good offer for a liver. Surgery tonight!!!!! I got in the car sanitized my hands and my right ear (promise I did) and off I went to get Jonah. No speeding this time. Made it home to the house I can't keep clean but is filled with love and happiness. LuLu asleep in her crib, Jonah next door playing with friends. Life is good. Anyone have a Xanax?
alpha 1, liver mum just rang. being rushed back up to the hospital. bad be continued.

Thursday, May 13, 2010

Thank You

I've tried to be diligent in sending LuLu thank-you cards to the many friends, family and strangers that have shown us a great deal of love and support this last year. With that being said, I know I've missed a Thank-You.

Thank you to all the people who take the time to check in on our LuLu, for love and concern about a baby you've never met before. Thank-you for sweet comments, encouraging emails and for the connections we have made with amazing people across the globe because of London's blog. I use to think blogs were for the birds, boy have I eaten my words. Blogs are quite amazing.

From the bottom of my heart, Thank-you.

alpha-1, liver mum

Wednesday, May 12, 2010

Welcome to Holland

(December 2009)

"Welcome to Holland"
By Emily Perl Kingsley, 1987.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, go away...because the loss of that dream is a very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

We are so thankful our London took us to Holland. It's the most lovely place we have ever been. The unexpected change in destination is exactly where we were suppose to go all along, changed us to whom we have become and changed how we will live the course of our lives. As hard as it's been in "Holland" at think we could have missed "ALL" that was this last year makes my heart sad.

alpha-1, liver mum

Monday, May 10, 2010

Miss Ramsi

Sometimes I think I can take on the world. Save this, do that...and then I realize I can't do it all. It's too much, I've pulled myself too thin. I love Ramsi. She is a GOOD dog. I wanted to keep her forever. She deserves the BEST. A loving FAMILY a BIG yard. I thought I could manage 3 dogs and 2 kids, but I can't. I'd also like to take on a third kid one day and that would make 3 dogs and 3 kids. I know I can't do that. I feel a lot of guilt for letting her go, but am reminded she would have died if James and I didn't pick her up of the highway 4 months ago and nursed her back to health. I can't keep every dog we find. Lesson learned.

We won't give her up to a shelter. We will foster her til we find her a forever home. We've been without a fenced yard since the move so my dear parents have had her down in Lehi in their big, beautiful back yard. If you or anyone you know is interested, PLEASE contact me. I'd love to be able to keep tabs on her and know she is doing well. She is great with other dogs (haven't tested cats but think it could work) and with kids. She is great indoors/outdoors. IS potty trained and comes with a Dogloo and kennel. She sleeps in her kennel at night without a whine. She is very smart and beautiful. We love her, but can't keep her. Can you?
***Ramsi has found a FOREVER home with an AMAZING family. (LuLu's pharmacist actually!!) We found her so she could get to them, I'm sure of it.***
We are excited to be her built in dogsitters, so we'll still get to see her & love her!

Sunday, May 9, 2010

Love being their MuM...throw-up, poop and all

The day started out ever so lovely. A Badger brunch at my sister-in-law Whitney's house. Love seeing my nieces and nephews who I've missed dearly this last year. The food was amazing, as always. Above our dear Grandpa Badger.

Not so amazing coming back up....

Shortly after we left Whitney's Jonah told me twice that his tummy hurt, did I take him seriously? No, not til he started vomiting all over the place. I'll believe him next time. Luckily, I had one of LuLu's blankies handy which took the brunt of it but it was still what I'll call Mothers Day Disaster of 2010. We pulled over to handle the situation then flipped a U and headed straight home cancelling the rest of the days celebrations.
Casualties: new carseat, my car interior, his clothes, Londons blankie, the pleasent smell that use to reside in my vehicle. This is when leather seats would come in handy.
Diet Coke--the only liquid in the car.

Parading while we (mostly James) cleaned up the aftermath.

Good thing we always travel with Clorox wipes which served 2 purposes- the wipes for cleaning up and the empty container for a barf bucket for the drive home.

We were almost home when Jonah warned me he needed to poop. I begged him to wait a few more blocks, "squeeze your cheeks" I said, we were almost home. "Too late" was his reply. We hurried and pulled over to a Blockbuster to borrow their bathroom and finish the job right. We returned to the car with him wrapped in paper towels- for modesty of course. Poor child, we all laughed with him/at him. So glad I had my camerra today.

The ride home....nothing but a paper towell and a seat belt to cover up with. So glad we weren't pulled over for any reason. Wouldn't have wanted to explain to the officer why we have a nakey- without clothes or a carseat.

Of course it was a Happy Mothers day because I was with my family. I am lucky to have 2 wonderful children. This day didn't pass without much thinking of our donor Ashley and her SWEET Mum and family. Their first Mothers Day not together. Camie without her firstborn by her side.
A day most of us celebrate and reflect on the joys of being a Mother, many suffer and feel their deepest sorrow about not having been able to have children of their own, feel the void of a child that has passed away or miss their own MuM's that are no longer with them. I am LUCKY our donor family decided to be a donor family and that this Mothers Day I wasn't without my beautiful, perfect, tough-as-nails London.
Love you MoM, Love you Cindy, Love you Grandmas of mine, Love you CAMIE, Love you Laura, Carol, Rob, April, Anna, MJ and all the other Mommas that treated me like their own growing up. Love you Jonah, Love you LuLu-thank you for making me a MOM.
Must mention another highlight of this day...seeing a cute OLD man riding a bike and smoking a pipe. Don't see that everyday. Laughs.

Thursday, May 6, 2010

Later Gator

AND, WERE HOME. (sweet home) Lu was so happy to drive the car down the halls into the elevator and out the door. She'd been waiting for days to bust out of her room for this joy ride. Welcome home LuLu, welcome back Jonah. Thank you Grandma and Grandpa for taking him the last few days.
alpha-1, liver mum
ps Jones get better, Mum and Lu don't want to go back to the hospital anytime soon.

Tuesday, May 4, 2010

Chaser Man

My friend's little boy was recently diagnosed with leukemia. His name is Chase and he's incredible as are ALL kiddos that deal with childhood illness. Come enjoy a wonderful carnival (promise there will be no "carnies") and support a great, big wonderful cause.

Our morale was lifted during our toughest times with London by the support of friends, family and strangers alike. Please show this family the love.

God speed little man.

alpha 1, liver mum

Verdict is in...

We were both very smelly this morning so Lu got a good bath and I got to go home and shower thanks to Aunt Mary Jane. I do not enjoy showering in public bathrooms, I'd rather be dirty til I can make it home.
You bet I'll blackmail my daughter with this picture one day. It made me laugh, hope it makes you too...

Ahh, that's more like it. Enjoying room service-a perk to being isolated to our room. Hospital food gets a bad rap, but it's actually really good- as long as you aren't eating it more than a few days straight, then it turns bad fast.

Poo for dinner or so it looks. It was actually dessert. Chocolate dipped Oreos- a favorite hospital splurge.

A visit from Jonah is always good medicine. Thanks to Nana, PaPa, cousin Jen, Miss Joy and Miss Julie for all your help with him. Jonah also loves self declared take-your-son-to-work-days like today.


..sounds really scary, but in all actuality it's a strain of the common cold. Not a big deal for most. For LuLers it is. Hence my paranoia about hand washing, shoe removing, Clorox wiping, limited visitors, aversion to public places etc. It's my life to keep her healthy we aren't ever "out of the woods."
"Rhino viruses can cause clinically significant, chronic lower respiratory tract infections in immunosuppressed patients. Respiratory syncytial virus, influenza viruses, and para influenza viruses have all been reported to cause serious lower respiratory tract infections in immunocompromised host."

We are happy it isn't anything worse but also realize that trips to the ER for a cold/fever is what is in store for us, forever. I'm not complaining- we are grateful she's here with us and we have access to the best medicine whenever she needs it. These few day stints are good reminders of just how lucky we are and how important our little family is to us. Life is so fragile and London is our constant reminder of this.

Get well & keep well my Little Lu.

Alpha 1, liver Mum

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