April and May: Filtered. Really Filtered.

In a Nutshell

Life since March has just been a little bit wild, crazy, and scary. There has been some happy, fun, and peaceful times as well.
A month ago, Ruby's little belly started to get very big, and she put on about 2 pounds of fluid in a week. She started sleeping really terrible, up every hour or two, and of course Matt was out of town. I knew she was not feeling very well and started to get worried. UCLA wanted her to be admitted, so Matt flew home early from his business trip, and met us there. During this stay in the hospital, they were able to do some very detailed testing to finally figure out what is going on with Ruby's liver. She has cysts that are blocking her bile ducts. One of the cysts is the size of about 20-30% of her liver, and is very deep, making it inoperable. They also suspect that there are several other smaller cysts on the smaller bile ducts further up on the biliary tree. We do not have a clear cut diagnosis yet, and were told we won't until after transplant and they have biopsied her liver. It could be a form of Caroli's Syndrome. Her condition mimics symptoms of Biliary Atresia.
So, after almost two long months of waiting, we finally got some answers. She was immediately evaluated for the Liver Transplant Waiting List, and was activated a few days later. The list is not prioritized by time, rather by a score that is calculated by how severe your liver failure is. It ranges from 0-40. She was listed with a 16, and a week later raised to 18, and is currently a 19. Most transplants occur between 20-30. One of her doctors said that he thinks that she will need a new liver in the next three months.
After a two week stay, her fluids were under control, and we were able to bring her home on Easter Sunday. However, she started losing weight pretty quickly. She lost almost a whole pound in one week. We were readmitted two weeks ago to start TPN, which gives her all of her nutrition through her PICC line. She gained a pound and half while we were in the hospital!
She is looking a lot bigger these days! She is getting some pudge on her thighs! It makes me so happy to see that.
This is kinda a quick and dirty update, but I needed to start somewhere. I plan on getting better about blogging when I have some free minutes!!!

Everyday

One day I kissed your fresh pink skin.
One day I cried with joy that you were mine.
One day you cried in the night, and I came.
One day you loved to be cozy and swaddled.
One day you looked at me with a funny half smile.
One day I found your ticklish spot on your shoulders.
One day your Daddy blessed you in Church and I cried.

Today I worried and worried some more.
Today I drove you to the Doctor and back.
Today I soothed you as you complained.
Today I tried 4 different bottles, but all you wanted was me.
Today you nursed, as I rubbed your back.
Today I rocked you to sleep in my arms.
Today I watched you sleep and dream.

Someday you will be chubby and pink again!
Someday you will run faster than the wind.
Someday you will pick your nose.
Someday you will fly as high as the birds on a swing.
Someday you will fall off your bike and scrap your knee.
Someday you will make your friends laugh with a joke.
Someday you will think boys are cute.
Someday you will love one of those boys.
Someday you will be married to one of those boys.
Someday I will watch you with your own pink fuzzy baby.

Everyday I pray for you.
Everyday I hope for you.
Everyday I dream for you.
Everyday I wish for you.
Everyday I thank Heaven for you.
Everyday, I love you.

Random Sampling of March and April

Speed blogging at it's best!

Hoping to make this a weekly occurrence.

Asleep at her appt.

all ready to go
kate accessorizing at the mall
"i don't like her!" (i should note that this is VERY rare)
swings at the pier
kates blue mouth from her "lipstick"
me and my buggy boo
sc pier
nursing while driving...not recommended.
saturday morning tradition.
i want to eat this girl up
hot hot hot day!
morning walk checking out the turtles
night swim with her daddy
what i have been up to
view while nursing

evening park trip
little miss in her bumbo
so thrilled to get a letter
me and my rubes
love this
maybe a little too much, but it was a cold morning
mornin' walk...
because this one makes too many treats!
we wait all day long for 6pm
it is the golden hour
yucky meds for the baby
cute bath girl

Ruby Jane Update

We took Ruby up to UCLA today to meet with the Director of Gastroenterology, and she is also the Director of Liver Transplants. We really liked her a lot. She was very friendly and sweet with Ruby, had the right amount of concern, and is obviously very on her "game". She is the "goddess" I refereed to last week, in the email.

We don't really have any real news to report on today. We know that her liver is very sick, and that something needs to be done fairly quickly to help her. She said that if we could not figure out the problem, and she progressed the way she is now, that she would need a new liver in probably a year.

The game plan as of now: Dr. McDiarmid, is going to review all of the biopsy slides, and all the studies, and films, and videos with some surgeons, radiologist, and pathologist, and then will get back to us on Friday. She said that we need some "fancier" testing at this point. So, next week, Tuesday or Wednesday, we will be admitted up there. She said we would probably be there for 3 days. The baby would need to have general anesthesia for most of the testing that will be done. (Matt is going out of town, and will be home Wednesday, so hopefully he will be back in time!)

Little Chubby Girl gained a pound this week. But this doctor thought it might be a good idea to start supplementing with the special formula to ensure she is absorbing the right amounts of everything that she needs.
Ruby continues to be a happy little girl. She is so sweet! She even started giggling a little this week. We are all so in love with her!
We will keep everyone updated as we get news.


We are still in good spirits. We are very worried and concerned for Ruby and her health, but also feel very peaceful and know that it is in our Heavenly Father's hands. We really felt uplifted and strengthened from General Conference this weekend, especially Elder Paul V. Johnson talk about trials and tribulations. He said, "Not one of the trials and tribulations we face, are beyond our limits because we have access to help from the Lord." I LOVE that. He also said, "We see marvelous blessings on the heels of great trials." Isn't this true? My favorite thing from his talk was a quote he read from Orson F. Whitney.

"No pain that we suffer, no trial that we experience, is wasted. All that we suffer and all that we endure, especially when we endure it patiently, builds characters, purifies our hearts, expands our souls, and makes us more tender and charitable. It is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire."
You can watch/listen to the whole talk here:
http://lds.org/general-conference/watch/2011/04?lang=eng&vid=882603385001&cid=5

We are taking this one day at a time! We know we have the love, support and prayers from all of you! That helps us get through! Our ward is organizing a fast for Ruby this coming Sunday. We would like to ask/invite everyone that would like, to participate. We know that prayer, coupled with fasting helps us to better understand God’s will and to develop greater spiritual strength. We could use it!

Prayer

Dear Ruby Jane,
I want you to know that you are a very loved and blessed little girl. Upon word that your liver was not functioning properly, the prayers started rolling in. It started out with a sweet and powerful blessing given to you by your Daddy, and grandpa. Then your story started to spread, and all of our friends were praying for you. And then friends of friends. And then complete strangers.

Emails, text, and phone calls started, letting us know that your name was on the temple prayer roll. Not just at one temple, but several. Newport, LA, Provo, Timpanogos, St. George, San Antonio, Redlands, Sacramento, Mesa, Las Vegas, St. Louis, San Diego, and Oakland.

And then members of different churches, and different dominions were praying and lighting candles for you. Just for your Ruby. Everyone praying for you, by name.

Through the low points of this month, your Daddy and I have learned that all we can really do for you is pray. We pray for comfort. We pray for peace. We pray for answers, and for guidance. We pray each night to be the parents that you need us to be.

Literally thousands of people are praying for you. I know that the power of prayer is real. I know that we have a loving Heavenly Father that hears and answers our prayers. We have already seen the miracles that can happen.

Little Ruby, you have a long road ahead of you, but we have the power of prayer behind us to push us forward.

I love you, sweet girl.
Mama

I want to eat her!

This little lady is the cutest thing ever. I am so in love. I stare at her all day long!

We just had an appointment with her GI specialist. No news really. We are waiting for more test results to come back. Part of her liver biopsy is in London undergoing some very special test that can only be done there. We should be getting some answers from that this week. Ruby has lost a bit of weight since we were in the hospital, so we are going to try two more weeks of breastfeeding, and if she goes not gain quick enough, then we have to put her on a special formula. Her body is not producing enough bile which is essential in breaking down long chain triglycerides which is the type of fat in breast milk. The formula she might go on would be easier for her body to absorb fat from. Currently she has little fatty deposits that come out in her diaper.
The currently plan is to treat her sick liver the best we can and keep her as health as we can with the liver that she has. At some point, it will most likely get to the point where a transplant might be needed.
She is super happy and very content. I am so thankful that she is not in any pain. She is developing fine in every other aspect. We are so blessed to have Ruby Jane in our family. She has already taught us so much, and given us some many opportunities to strengthen our testimonies in the gospel and the plan that our Heavenly Father has for us. We love our little girl so much!
Please continue your prayers for her!

My Kate Bug

I don't even know where to begin with this little ball of fire. First potty training, then the move, then the baby, and now all this craziness with Ruby! She has really had a lot to deal with. She has definitely felt the stress, and has shown us in her own little (or sometimes huge) ways! But I am really proud of her and how flexible she has been.

She is usually her very bubbly and super happy self. She has started talking like a mouse??? Not sure what that is about...? And she adds "ie" to everyTHING! Nappie, Rubsies, cheesie, watsie, etc.

She continues to crack us up with all of her funny phrases. At dinner she put down her fork and stuttered, "What the...what the...what the....what the HECK! Where did the sun go?!"
She often tells us, "Don't freak out, calm down!" and "Don't worry, it is not a problem!" I am seriously very nervous for her teenage years!


Still obsessed with cartoons and movies. She is very scared of all the villains in the older Disney classics, and watches through her hands over her eyes!

She recently got a princess scooter to go along with everything else princess that she owns. She has a slight lisp and when she says, "Princesses" I want to die it is so cute!

Kate loves her little sister. Every morning when I bring the baby down, first thing she says is, "I want the Rubes!" She calls her "Rubes", or "Missy", or "McDubers". Last week so told me she wanted to start calling her "Sweetie".

Kate is a HUGE cuddle bug. It is all she wants to do. If she could lay on the couch with us, curled up in a blanket all day, she would!

She has got some serious dance moves. She has good taste in music, and knows how to operate the iphone remote to play music on the computer.

Her favorite things are: Milk, her Binky and Bobo, after dinner dance parties, Ruby, Daddy, Mommy, the park, and her dress up clothes.

We love her little Kate Bug! Can't believe she will be THREE soon!