14th Birthday

Ashley drew this picture shortly before dying...entitled Ashley's Heaven. We know there are horses there.

Ashley, LuLu's liver donor, would have been 14 this last Monday. Her birthday is a tender day for us. Not a day goes by that we don't think of her, pass by her pictures through our house or send a prayer of gratitude each night for her and her family. But to wake up Monday morning knowing it was HER special day that should have been celebrated rather than mourned makes it all so real and sad.

My eyes weren't dry that day for more than a few minutes at a time as I thought of Ashley, Her DAD, Her sisters, Her Grandpa, Her cousins, aunts, uncles & friends. But most of all for her dear, sweet MOM. I put myself in her shoes, knowing it could have been me to lose my daughter and how I would be feeling every moment of every day if that were so. Life would be impossible, yet so many people carry this sorrow every single day. I love Ashley's mom so much. She is a wonderful woman, so generous and so kind- it's not surprising that Ashley was who-she-was at the ripe age of 12 when she left this world behind her.

I really do wish Ashley was blowing out 14 candles, had planned a fun party and was spoiled with gifts. Maybe a horse? Would this have been the year she'd get a horse? I couldn't help but wonder.... I'd give anything to be connected to her and her family a different way. Or simply not to know them at all if it could mean they had Ashley back.

After LuLu's preschool we went to pick up balloons. Her favorite colors, blue and purple, just like last year... 14 rather than 13. London was telling people at the party store that is was Ashley's birthday- if only they what that meant. We wanted to let them go at the donor monument down town but it turned cold and dark too soon. LuLu and Jones let them go to heaven sending each one up with kisses or words of love for Ashley. We sang Happy Birthday to her several times that day but no notes were sung as beautifully than from LuLu as she let balloons drift up to heaven.

In the morning I asked: "LuLu what did Ashley give you?" she looked down at her bare tummy and proudly said, "a scar", "no, LuLu- what's behind the scar?" "Oh, a liver!"

We love our Ashley! Happy Birthday sweet girl. Thank you for LuLu's perfect liver and happy life-no longer being lived in the hospital, in chronic sickness or in constant worry by all who love her. Bless donors and donor families everywhere.

xoxo

video link below:
http://www.youtube.com/watch?v=Gd9t1_X9Z9s&feature=share

prima ballerina

My little Lu started dance about a month ago. We are taking with our dear little friend Olivia and it's a weekly 45 minute slice of heaven. I softly cried through her first class. It wasn't too long ago that I wondered if my sick baby would be able to dance one day. (insert picture of SICK LuLu in liver and kidney failure, or vented and tubed and IV'd to the hilltops) I count my lucky stars that her transplant did come in time. Sweet London gets a chance to do anything and everything in life.

I recently came across this blog that had so many similarities to ours it was uncanny but her little liver didn't come in time. I was hysterical in the wee hours of the night when I finished reading Ruby's story from beginning to end. I thought I was going to have a panic attack, my throat was closing up I could hardly breathe. The grief I felt for this young mom hit me to my core. I spent the rest of the night curled up with London in her crib. Holding her tight and recounting my blessings. I wondered why that wasn't us and what if it was? it could have been....

I was ashamed in those hours that I don't remember all we learned through our trials with London on an hourly or at least daily basis. I had begged James to do bedtime with the kids on this particular night because I had just had enough of them for one day. My heart ached that I didn't tuck them in, read to them, sing to them, kiss them--because I could. My sweet children are alive and well and I gave up a bedtime with them- something that Ruby's mom would die for. I cried for our Sweet donor Ashley's mom and imagined how empty her arms must feel.

So lessons relearned, seeing LuLu in the special glory that is hers rather than such a terrible two. I thank God she has such a strong spirit, it served her well through disease and sickness and I know it will continue to be such an asset for wise, beautiful, tough as nails LuLu. Love you girl.

xoxo
lizzie

Ode to Ashley

Kissing Ashley's name on the Donor Wall.

Ashley Lauren Maynard...can you find it?

LuLu met her Livers Daddy for the first time this weekend and we loved spending time with him, remembering Ashley and eating good food. London calls him LiverDaddy, so cute.

Our parents and almost all of mine and James' siblings, nieces and nephews were at the ceremony and unveiling of the wall. It was a great morning. I'd recommend going to the amazing, beautiful monument that is on the SE corner of the Salt Lake Library. It is spectacular.

Meeting LuLu. He has known her well through her blog but this was the first time they were able to meet as Will lives back east. We appreciate his love and concern for London and her health.

I'm sad I missed the opportunity of getting pictures with Ashleys Grandpa and cousins but are so glad we got to visit with them. Love you Maynard Family!!!!!!!!

Me and my miracle.

PUZZLE, yard sale extravaganza & application sent!!

We have seen on other adoption blogs and loved the idea of a puzzle fundraiser. If you'd like to help us with adoption expenses, you can purchase a piece of our puzzle for as little as a dollar per piece. We will write donors names on the back of the pieces to help us remember all of the support and love we had along the way, and eventually frame and hang this sweet giraffe puzzle in our baby's nursery. I've linked a donate button on our sidebars if you are interested.

check out our family blog to see our yard sale fundraiser:

http://thehousethatjamesbuilt.blogspot.com/2011/08/yard-sale-extravaganza-application-sent.html

Plus 1 please

What started out as a grave diagnosis for LuLu over 2 years ago has led us down many paths filled with sorrow and turmoil as well as amazing, unique blessings.

To name only a few (of the good stuff)... our association with people we would have otherwise never known.
Our appreciation for health and the life of our children in a whole new light.
Our respect for people in the medical profession and all the loving hands at PCMC-- I have always thought doctors and nurses were great (my mom being one of them) but it is different when your child would not be alive without them.
Our gratitude to live in America where we have resources at our fingertips that others can only dream of.
We have been loved and surrounded by friends and family that have carried us through hard, hard times.
Our love for a new extended family that is our donors. And a DEEP love for our Ashley angel.

HOW??? would we grow our family in the future was burning in my mind and heart when we found out that what London had was a genetic disease passed down from both James and I. The seed was planted that evening in February 2010 I just didn't know what it would look like when it bloomed.

The chances of having another child with Alpha-1 is 1 in 4, a carrier for the disease 2 in 4. For a little while I toyed with the idea of "taking our chances" and accepting whatever God gave us. We would never take back our LuLu and the same would be said for a future child ill or not. Fast forward many months of seeing her suffer, thoughts and times of actually coming close to losing her, waiting for another child to die so that she might have a healthy liver and finally flourish... We will not be playing with those odds. I can't do it to myself, my family and especially not another baby.

We researched fertility treatments. Genetic testing. Adoption. Just being happy with our 2. Until our trip to Haiti in March we were still undecided though adoption seemed like the best decision to us. After Haiti it was all I could think about, in particular an orphaned child from there. It was a major disappointment for James and I to learn definitively that Haiti would not be an option for us because of age and marriage requirements. It felt like a deep loss as we love the children there who are so desperate for a home. We went back to trying to feel like maybe our family was complete with 2 as we didn't feel like genetic counseling was for us nor did domestic adoption feel like the right path for us.

We are still so sad that Haiti's red tape and broken system prevent adoptions from happening but are grateful for what we saw, learned and felt there and knew they weren't the only orphaned children needing a Mom and Dad...and a Jonah and a LuLu. So, thus the search continued and has led us to Ethiopia. It feels good again and right. It will be another road filled with uncertainty, ups and downs as well as great lessons that will be as rich as the ones we have experienced the last two years. God has led us in this direction and we are following a little blindly as the expense of adoption, especially internationally feels like a road block that will be impossible to get around. But, as I have heard a million times in my life- "Where there's a will, there's a way" and that shall be my mantra.

home for the fireworks

I didn't blame her for being mad after the day she had and then to come down and find the TRAIN wasn't on because it was a SUNDAY. Ugh. Poor girl. ;P

Bath time in the hospy. She is so big we graduated her to a real tub rather than a baby bucket. Just had to keep her IV sight dry...She was having a blizzzast.

Then some special friends came for a visit. Nate my friend from MHS and his sweet wife Suzanne who has become a dear friend of mine. Thanks for the Little Mermaid Squeekies. SHE loves them and we have yet to lose a singe one. Loves to you Gage, Kate and Eva!

********************************

We were able to be sent home in time to watch fire works on the 4th with friends from our neighborhood. We cancelled original plans to avoid crowds and get the little toad to bed at a decent time. We enjoyed visits in the hospital from friends and family and had such a great nursing staff. I will keep this positive and NOT go into the awfulness of London being cathed for a urine sample, other than to say it will never happen again. Momma wont allow it. We will go about getting pee the old fashion way. Wish I would have stuck to my guns and said no. It wasn't good for anyone, poor LuLu was so confused, hurt and felt violated. There I go. I will stop. It was among the most awful 15 minutes of my life. Love you Sweet London. You are the bravest of the brave. Stay well now...for a while anyway. xoxo

make plans, cancel plans

the bow was a nice touch, lulu appreciated it....

woke up from this nap to my mom's beautiful face...she is still my comfort just like i'm lu's. i would have loved for my mom to hop in the crib with us!

it was going to be a really fun weekend. dirt biking this morning, birthday party for the kids, staying at a friends cabin tonight...throwing a surprise party for my sis-in-law tomorrow (SURPRISE SARA!).... but it's not unusual for us to avoid a crowd to keep London well or to cancel the fun stuff to get LuLu better. so instead we headed to PCMC this morning for a (short) stay...we should be able to leave Monday, knock on wood. we will make up for the lost fun next weekend. London's temperature got up to 103.5 which is an automatic hospital stay for her.

i'm not saying that watching the little mermaid on a continuous loop isn't fun....just not AS fun as plan A. it always makes me take pause to reflect on how grateful we are for modern medicine, the care we receive at Primary's, for our donor Ashley and how fortunate we are to have such a miracle child. she is an impeccable 2 year old. i hope i'm as proud of her as a teenager as i have been in her short life thus far.

her labs look good, she's receiving fluids and IV antibiotics, urine/stool samples look okay, so not sure what the cause of the fever- probably just a typical bug that kicks her cute, little immunosuppressed butt.

get well soon my little lu.

My Love

LuLu loves our porch and being outside. I always feel like we are making up for lost time. We enjoy side walk chalk, blowing bubbles, eating and ant watching on our porch. Her toes curl under and she's totally creeped out by the ants but she loves the thrill of finding them. She's not afraid of needles or large dogs. Go figure. We feel totally, utterly lucky to live in such a great neighborhood filled with friends we've grown to love over the last year. I don't think I could picture a better place for our kids to grow up. I am extremely grateful. LuLu has been in great health since our last hospitalization in March and we plan to keep it that way! Fingers crossed, knock on wood, Pray to God. I can't help but panic even when she gets a slight cough or runny nose that it will turn into so much more...but that's the life of a transplant kid. I have a feeling it will be a fabulous summer. :)

On her throne...

Prayers for little Livvy, please

http://wintersfamily5.blogspot.com/

Little Livvy has been struggling and suffering for a long time now. We use to both bunk at Hotel Primarys together but as Lulu's stays have decreased in frequency- Livvy's have picked up, ALOT.

Answers have been hard to find, the right kind of Doc- unknown. Please pray for miracles to happen for this great family. Olivia has a stong Momma, my heart breaks for her knowing how hard it is to see your baby suffer.

I know miracles happen, we have seen them at Primarys time and again.

xoxo

My Mothers Day Gift

While at my Mom's house on Mother's Day we came across this picture of London. It hurts to look at. Her tummy was so swollen and uncomfortable from hypertension and would later have to be drained with a needle on several occassions. She wouldn't eat anything orally when it was this big which would make for a lot of super-foods going down her tube-which she would inevitably throw up. She use to throw up all day long. The worst was finding her asleep in it during the night or morning unknown to us.

Her arm is all bandaged up like it was for months and months because of her PICC line which would give her the nutrients directly into her blood stream to keep her nourished since she wasn't keeping her food down, nor absorbing food properly because of the damage already caused to her liver. We could never get that arm wet, which made baths a little complicated and not so much fun. After her transplant it was removed and a central line was put in which is essentially the same thing but closer to her heart, again making bath time (sponge time) hard and potentially dangerous to her. I'll never forget the first time I was able to shower with her after she had no more lines- it was one of the greatest, most special moments of my life. I'll never forget her little body clinging to me like a baby monkey, enjoying being soaked and sprayed. I cried, she laughed.

Seeing this picture and being reminded of what life use to be like, something I easily forget- felt like the best gift I could have been given on Mothers Day. I was made to remember that every day with her (and Jones) is the greatest blessing on Earth.

xoxo

To GO or not to Go, that was the question

We had labs and clinic on March 29th and everything looked great. SO great that we were able to discontinue 2 of LuLu's meds. YAY. She is down to 1. I can't believe it-- a year ago we were giving her dozens. She takes Prograf (anti-rejection drug) twice a day at 9 and 9 and will forever. With Prograf comes many side effects and I've just recently had the courage to dive in and study them all out in greater detail and understanding.

I know, it took me a year but I couldn't handle it emotionally until now. There is no alternative to taking it for it's the only way to prevent her from rejecting her liver and dying. So we will deal with whatever comes-as it comes. The greatest worries for me are her (much) increased risk for Melanoma and Lymphatic Cancers. She will probably never conceive a child for the side effects on a fetus are devastating. I learned this at a peak in my own grieving about not getting pregnant again myself. We have chosen not to risk this disease on another child. I am so glad I loved both pregnancies and both deliveries. Labor and delivery is the best thing in the world.

I wish I had known LuLu would be my last, so I could say goodbye to that then, know it was over, the last time I'd take a brand new baby home from the hospital. It's like not being able to say goodbye to someone you love and will never see again. I stopped feeling sad for myself for I've experienced this miracle twice and just felt sorry for my little baby.

I know though that adoption can and will be a wonderful experience for her if she chooses to do so. It will be it's own unique, special journey and she will be a spectacular little mother. (in like 30 years) Babies will be sent to her from God through a different medium but the ones that are suppose to be hers to love. Adoption has been on our minds a lot lately. Even before we got married James and I talked about it being something we'd love to do and we hope we can. Especially with our recent trips to Haiti the need for loving homes for these amazing children is so great. We hope to be so lucky.

After LuLu's fabulous clinic appointment on that Tuesday the 29th she became really ill just hours later. Tuesday, Wednesday, Thursday...starting to get really worried for her and my need to cancel or pursue my trip to Haiti on the following Sunday. We went for labs Friday to check the little lady out and she got really ill in the main lobby of the hospital. We were sent to the ER for testing and to start receiving fluids and meds. I began to say goodbye to Haiti... London was admitted to the hospital and made a really quick turn around. My hopes to go began to flicker again and allowed myself til Saturday to see how she was doing before deciding one way or the other. Tests came back positive for Rotovirus (yes, something she was immunized for) but having already been sick for so many days figured she was at the tail end of it. Her improvement overnight was basically a full recovery and as soon as we were released that afternoon I began to pack and looked forward to an experience of a lifetime.

Thankfully London did so well while we were gone and I had no doubts about ALL the capable hands her and Jonah were left in. And Haiti was the best thing that could have happened to me.

A weekend away-the real kind

Welcome normalcy. I have missed you for two whole years now. Splashing at the pool with my baby couldn't be sweeter. A little mini vacation to our family condo in St. George has been a long time coming. We needed this weekend. We loved this weekend. We will have many more weekends LIKE this weekend. We were in the greatest of company with dear friends joining us. London was the definition of happiness while in the pool and all I am hearing from her lately is "want to go swimming NOW mama" "want to go swimming NOW mama" "lets go for a trip mama" We will be going swimming MORE LuLu, but not always NOW.

The truest kind of love. James and LuLu. He loves his girl.

He loves this girl too (me) and loved me even more after I learned to ride me a dirt bike. He's gotten really good at this sport the last few years and has been wanting to pull me in to this addiction of his. He did and I love it too. No, I didn't ride in a tank top. I had every piece of protective gear known to man. Thank goodness...or I wouldn't have walked away from this weekend in one piece. Think I know what James will be getting me for my 30th, a little, girly sized dirt bike wrapped up in a hot pink bow to match my riding pants...hint. hint. Thanks for the loaner Chantell.

Sweeties bathing after swimming. This is our little friend Tori. We love her. She is the worlds best 2 year old (no offense Lu). Mind boggling really...chalking her up to really great parents. I took pointers this weekend- believe me.

Happy wedding to Bryce and his beautiful bride Cherise (the real reason we headed south) and cheers to good friends (Tellie, Scott, Jenna and Joe, Kath and Adam), good food and warm weather.

I was so happy to come home to melted snow and growing tulips. Mother Nature knows I need Spring. No more snow. Please. Begging, actually.

Hoping all your weekends were swell too...

xoxo lizzie

Weekend Getaway...

...JUST NOT WHERE WE WANTED IT TO BE

LuLu had been sick for about a week, throwing up and a bad cold. We took her to the doctor and was assured it was just a cold. But several more days of her feeling miserable and then spiking a fever it was off to the ER Friday night. Well, we had to check in @ the ER but were able to bypass it and go straight to the penthouse of the hospital. 4th floor ICS (Immuno Compromised Services) a very exclusive group of little people-cancer, HIV/AIDS and transplant kids. After a few hours of MISERY-- labs, urinalysis, chest xrays, and a DEEP nose suction for a VRP (viral respitory panel) which always leaves her with a bloody nose.

RESULTS: a double ear infection and RSV (Respiratory Syncytial Virus) which is very scary for little ones like Lu.

Checkin the view...

She received maintence fluids since she wasn't keeping anything down and IV antibiotics for her ears and anything else that could have been lurking in her body. I dreaded the day our mobile, walking, climbing the walls London would have to be attached to a tube, pole and confined to a small room. The days came and went and we survived.

I spent the first night in London's crib with her. She wanted me there and I wanted to be as close to her as I could be. She was inconsolible and after a few hours, so was I--for many reasons that night laying next to her. But her pain and confusion were enough to justify my tears and heartache. We cried ourselves to sleep together until a few hours later when her IV tubing was wrapped around her neck, which again made me glad I was laying right next to her. Oxygen & many hourly vitals later the night finally ended and a new and better day began.

We were getting creative trying to entertain her...whatever makes her happy. She really wanted to go swimming- this is what we came up with and it was good enough for her.

>>>drinking like a kitty cat...however we can get her fluid intake up...

We were able to sneak away while my mom stayed with LuLu to spend time with Jones. We took him to a movie about space (which he's been really into lately) at Clark Planetarium then enjoyed the exhibits. Here's Jones on the Moon... We always say "love you to the moon and back"

Then he hopped over to Mars...the other night Jonah asked James if he knew how much he loved him? James asked how much and Jones said "to Uranus and back, do you know where Uranus is Dad?" He is a funny, smart, quick, witty 4 year old. That comment will go down in our books.

There is a learning curve with chopsticks...

self portraits with my little man. It's important for the "well" child to get mom and dads love and attention while London is sick in the hospital. He was having so much fun staying with his Aunt Maryjane that he didn't really even want to come with us-- but I think he tolerated it ;). He was really glad to return to her after for their second sleep over.

Back to the hospital where Lu was bathing Dora, purple guy and her bouncy ball. She would ask for her Bubby a lot and go to her door knocking for him and wanting to call him on my phone. She loves her brother, always misses him when she is in the hospital.

The most gracious thank you to Aunt Allie for rushing some Dora DVDs to LuLu which she watched around the clock. Dora's voice now makes me want to stab pencils in my ears but I am grateful she entertains London in her time of great need. Thank you Mom for staying with Lu so James and I could be with Jones. Thank you Aunt MJ for taking the best care of Jonah, Thank you James for being the best Dad ever to our two kids. He slept the second night with her while I got to sleep in my own bed. And last but not least thanks to the GI team and to a loving Heavenly Father that is always mindful of London and our little family. We are happily recovering at home now and will be back to the hospital Wednesday for labs.

Not a shabby view from our hospital room.

xoxo

Lizzie

liver mum