First in line!

Poor sick baby, it is just time for her to feel good now! She has been a trooper, but this week has been so rough on her.

This afternoon we got word that Ruby has an offer! She is the primary recipient this time. Big news!
There is a family that is grieving right now, and in the midst of that grief, have decided to donate the amazing gift of life to Ruby, and possibly to several others. I really hope we get to meet the family one day.
Her surgeons will be looking at the organ in about an hour. They will determine if it is viable at that time. They will also be looking at the size of the left lobe, and deciding if they can split it. Because Ruby is so so tiny, it will only work if they can split it.
We will know around 4 am, if they were able to split the liver, and the size is going to work for Ruby.
I am very calm right now. I know that once we get a definite "yes" or "no", that my emotions will be all over the place. But for right now, I am ok.
I just have the strongest testimony of the plan that our Heavenly Father has for this sweet baby. It is completely in His hands. I have realized this through lots of trial and error. He has it covered, and I think that is why I can rest at ease.
Most of her prep is done, and I am going to try to get some rest, if I can!
Keep those prayers coming!
GO RUBY!
Grateful for Kate, and the comic relief she brings to this situation!

updates

are we friends on facebook?
i have been updating facebook more often than this blog. it is fast and easier for me when things are crazy around here.

the latest?
ruby is in the back up position again tonight for a liver. there is about a %20 chance it will actually work out for her, but at least it is something! her score jumped up to 29 today. we get getting there!!!! we will know by 2am if the organ is good, and they will start prep-ing her. we will know by 8 or 9am if it didn't work for the other recipient.
will update when we know.

when we get a chance we will do a bigger update on here. today has been an information overload, and our heads are still spinning!

Floating

My friend asked how I was doing yesterday, and I told her that we are just floating on prayers.
It really is true. I know that Ruby and our family are being SO blessed, and watched over right now. It is really amazing how everything has been working out.
Friday night I laid in bed and was praying to feel more prepared for transplant. I have not been hoping every night for a call. It has been more scary than exciting until this point. So, that night, just after I finished spilling my heart out, she woke up and was fussing the whole night. I could tell something was really bothering her. And, I can honestly say, after this weekend's craziness, and watching my poor girl, I really want that new liver for her.
We were warned that she could start bleeding, and also having black tar-like poop. We were to call the second we saw any of this. Every time I changed her diaper, I was so nervous to find anything usual. Just hours after we got to the hospital, she had both. I was so relieved that we were already here, and there were doctors around that knew just what to do.
When Erin Elton was here a couple weeks ago to visit Ruby, and interviewing me for the video that was posted on the Mormon Bachelorette, we were talking about a date to have a special day of fasting and prayer for Ruby. She said, how about July 24th? Well, as it turns out, of all the days of Ruby's life so far, that has been the hardest day. It was a day that she truly need the extra blessing that come from faithful prayer and fasting. AND we saw those miracles happen that day. Her doctors said that she was doing way better than expected on Sunday as she was recovering from septic shock.
I know that we have a loving and amazing Father in Heaven, and he works though amazing people. We have seen this time and time again.
I was just waiting in the lobby of the UCLA Blood and Platelet Center, trying to give blood for Ruby, when a cute girl walked up to the receptionist and said she was there to donate for Ruby Taylor. It was someone that I had never met in person before, but she reads this blog, and felt moved to drop everything today, and donate for Ruby. Turns out that my iron was too low to donate again, and Matt was turned away for another reason as well. I am so thankful for these good people who are willing to serve our sweet baby when they have felt the prompting. Walking back to the hospital, and feeling a little rejected and frustrated for having low iron, I couldn't hold back my emotions when I realized that she was sent there for a reason today.
We have felt strength when we should be weak. We have felt energy, when we have had little sleep. We have felt hope, in this desperate state. We have felt love and support, and prayers, and miracles happening each day. Just when I get down and frustrated, I get an email, text, or call that gives me the strength to go on.
There truly is a plan for us. We are being guided along this path by Heavenly Father. I have known this, but these past few days, the evidence of this has been made very obvious.
We feel your prayers. We feel your support.
Thank you for keeping us afloat.

What a difference a day makes

ER

Phew. Finally a moment to think and to update.
Friday Ruby was acting very weak and more and more sleepy. Friday night she was awake fussing almost the whole night. Saturday morning we talked with her doctors, so asked us to get some blood work done to check some levels. I sat at Mission hospital for 2 hours with her waiting for someone that could draw blood from her PICC. She started to feel feverish to me while we waiting. After 2+ hours, they finally said, no one would draw from her PICC. I brought her home, and she was acting very lethargic. I took her temp, and got the doctor on the phone, and he said, even with a low grade fever, her risk of infection with
her PICC is high, and to bring her up to UCLA.
Trying to bring her fever down

In the ER she was more and more sleepy, and had a higher temp. They started treating her for infection. We got up to a room around 10, got her settled, and went to sleep. I woke up to 2 doctors leaning over her, whispering. I asked what was going on, and they said that her blood pressure was very low, and they were a little worried. They said to try to feed her, and then left. I picked her up, and she opened her eyes a little and drank about a 1/2 an ounce and then immediately threw up. When Matt turned the light on, I could see there was blood in the vomit. Then her eyes kinda of rolled back, and she was completely limp. I told the nurse to get the doctors, something was very wrong.
A few doctors came in, and a bunch of nurses. They kept taking her blood pressure, which was dropping, and were trying to figure out what to do. They ended up calling the rapid response team. So the doctors and nurses from the ICU came in, and they quickly started giving orders. I was just standing there, holding her hand, and obviously dying inside. In those moments, no one really has a lot of time to explain things to us, so it is very overwhelming and scary.
They gave her a quick does of fluid to see if it would help, but nothing. So they did a second, but her blood pressure remained the same, and she was not waking up.
She was in septic shock, which serious condition that occurs when an overwhelming infection leads to life-threatening low blood pressure.
It was decided she needed to go to the Pediatric Intensive Care Unit. Once we got here, they kicked Matt and I out, to put in a few more lines of access. We just sat in the waiting room silent and deep in thought and prayer. I hate being away from her in those moments. Even though she was not awake, I feel like she still knows when we are there.
A nurse came in 30 minutes later and said they were able to place two more lines, and had her started on medication to raise her blood pressure, but she was still not responding. She told us we could come back once she was stable. After a few more minutes, they got us. Those were some long minutes, let me tell ya.

It goes against all my mothering instincts to leave her uncovered. I hate it! But, since she was hot, we had to leave her like that.

As she walked us back, she said not to be alarmed, and that it was kinda a mess in the room. Poor girl had lots of pricks, and two new lines, in addition to her PICC. Then I noticed blood all over her shirt. They told us that she threw up, and it was basically all blood. So scary. I was so glad that I was not in the room for that moment, because I know I would have just died.
Her blood pressure was slowly raising, and she began to open her eyes and fuss a little bit. We were so so glad to see her starting to wake up and respond.
She was breathing fast, so they started her on oxygen. She had no peed for over 6 hours, so they inserted a catheter as well. And because she threw up blood, they also put in an NG tube to drain the contents of her stomach, and remove any air in her stomach and intestines.
Waking up and feeling very yucky.

She stabilized pretty quickly. After the course of the day they very slowly were able to take her off both of the blood pressure medications. She started having a lot of blood her in urine and stools though, which is alarming to see. When there is such shock to the body, the liver and kidney's take a hit, and a lot of her liver functions worsen, which is why she is bleeding.
She has had a few plasma and whole blood transfusions. She is now off her oxygen, and the catheter was removed. She is much more awake, and we even got a smile out of her this morning! SO so so comforting to see. She is about to get another blood transfusion, so hopefully after that is done, she will perk up even more.
Where we sleep. One pull out chair, with the stroller at the end. One of of sleeps with our head in the stroller!

Her oral feeds are still stopped, because of the blood in her stomach. I think she will be much happier when she gets to starting eating again. She is acting hungry, and loves we when dip her binky in water. There is no talk yet about her leaving the PICU, so we probably will be in this unit for awhile as she recovers from the septic shock. They said they are very happy with the progress she has made, and is doing better than they expected! GO RUBY!
The good news? Her score increased 2 points, and she had her first serious offer last night. She was in the back up position. The liver ended up not being usable, for the other child, or Ruby. But at least we are competing now.
Here is a picture of her from a few minutes ago. Getting her blood transfusion with my blood!

That's the update for now. She need as much help as she can get, so please keep praying for her.
We KNOW these prayers are being heard.
We know she is being watched over.
Smile earlier today!

home

carpet. bare feet. soft towels.
a stove. a fridge. down filled couch.
cooking. cleaning. evening walks.
food fights. sunshine. swimming.
ice cream runs. giving children baths.
combing wet hair. tucking girls into bed at night.
my husband.
my family.
it really is about the little things.
sorry if this blog has been a little quiet lately, i am soaking in my life.

Donate Life

We have prayed to know what we are to learn from this trial we have been given. We know that all things are given to us for a reason. We feel like Ruby is such a special little baby, and has already touched thousands of people's lives. We know that there is so much good coming from this hard trial.

Ruby is lucky enough that her disease is curable. Through organ donation, she will get a second chance at life. It is amazing to me, that someone is going to give our child the gift of life. Matt and I feel like it is our responsibility to spread the word, and awareness about signing up to be organ donors. I was always a little nervous about putting that dot on the back of my drivers license, but I really had not taken time to educate myself about the issue. Now that I have, I feel like I need to share what I have learned.

Over 111,000 people are waiting for a lifesaving surgery. 1/3 of these people will die waiting. Now that I am a mother of a child that will die without a transplant, I know the panicked thought of, "What if we don't get the call in time." We all have the power to help change this.
1 person can save the lives of 7 people. 1 person can enhance the lives of 50 more.

I struggled for a period of time with the knowledge that God has the power to heal Ruby, but it wasn't happening. Miracles can, and do happen. I wanted a miracle for Ruby, and I felt like just weren't getting one! But, an organ transplant IS a miracle. It is truly amazing.

The fact of the matter is, someone has made the selfless choice about being an organ donor. That person is going to give the gift of life to my baby. How can I not sign up to do the same?
Will you?

Our goal is to get 200 people to sign up. Please read and educate yourself about this issue. Here is what Cecil O. Samuelson said about organ donation. If you decide to become a donor, email me and I will send you one of Ruby's wristbands!
Signing up only takes a minute.

Need amazing family photos?!

Prayers Answered

We just walked in the door with our Ruby Jane!
She was able to come home tonight! We are so thrilled to have her in our home for as long as possible before her transplant. She is sound asleep all cozy in her bed, already.
We are so thankful for the prayers and support!
Just wanted to share our good news!!!
Goodnight!

You've got questions? I've got answers.

What does Ruby have?

Caroli’s Disease/Syndrome

What does that mean?

There are several cysts, one being as large as 20% of her liver, that are blocking her bililary tree. They keep bile from leaving the liver as it should to digest food, etc. As it just sits in her liver, it is damaging it, and leaving it very scarred. There is also risk that these pockets of bile can become infected.

Is her Caroli disease genetic?

There is a difference between Caroli’s syndrom, and disease. One is genetic, and one is not. We will not know certain which it is, until they biopsy her old liver after transplant.

Are there any other family members with anything similar?

No.

Does she have any problems with her kidneys?

No, however she does have an enlarged spleen.

When did you know something was wrong and how?

She was looking more and more yellow to us. The color of her poop also was changing to a lighter color (lack of bile present). And I had had an uneasy feeling regarding her, but couldn't put my finger on it.

Why are her eyes yellow?

She is not able to process biliruibin like you and I. A normal range is somewhere around .2, and Ruby’s current total bilirubin is 26.5. This causes her skin to look very yellow, and her sclara to look almost green. This also makes her itchy.

Can’t they operate?

They have done extensive testing to see exactly where in her liver the cysts are, and they are too deep, and far too many. They would damage the liver beyond repair by trying to get them. Plus, her liver is already very scarred.

How does the scoring system (PELD) operate?

There scoring system goes from 0-40. There are also Status 1A and Status 1B. The Status 1A/1B are for the most critical patients, usually in the ICU, and would die in the next days or weeks with out a transplant. They get first dibs.

Ruby was listed with a PELD (Pediatric End-Stage Liver Disease) of 18. She crept up to 19, and then was hospitalized, and stabilized, and went down to 11. Several weeks ago, she was an 18 again, and then two weeks ago a 25. Most patients get transplanted in the mid twenties. YIKES!

Do you get any sleep?

Sometimes! Some night she is awake (itching or teething or….?) every 30 minutes. Last night she went to sleep at 8:30, woke at 12, 4 and 6 (for her binky to be put back in) and woke up at 8:30. That was a good night!! I can sleep better at the hospital because I am not as anxious or worried. If I get to go home, it takes me a couple hours to fall asleep, and then it is just restless sleep. I sleep on a couch at the hospital, which I am getting very use to!

Is someone always there with her?

Yes! Always. However, recently I have become comfortable going out for 30 minutes or so for a walk or food while she naps. Lately I have been staying up here with Ruby during the week, and then Matt comes on the weekend, and I will go home to be with Kate. We have tried very hard to keep consistency for Kate. It is very important for her. It is also very important that she is not forgotten in this mess. We have been very careful to give her what she needs, wants, etc. She has a play date in the mornings sometimes, then goes to my parents house for a nap and to play. Matt has dinner with her at my parents, and then takes her home most nights. There is not a lot of left over time for Matt and I, or any personal alone time, but we are getting through it! Three or four times we have left her with someone else (my mom, sister, or aunts) for the night, and all been at home together. It was sooooo nice, but felt very strange not having Ruby with us.

Are you still making those cute headbands because I love them and want some!?

I closed the Ruby Dubie Shoppe a couple months ago. It was fun while it lasted, but I have no free time anymore! I am hoping to re-open and stock it up at some point. I’ll let everyone know.

Are germs a worry for you?

Yes! If Ruby get's sick, they have to remove her from the list for a couple of weeks. So, we have been somewhat on lock down for the past 3 months. We don't let kids hold or touch her (only toes!). We are crazy about washing hands, and using hand sanitizer. Kate is very good at reminding people of this. We have not taken Ruby to church, and have not allowed Kate to go to nursery this whole time. We switch off going to sacrament, and then the sacrament is brought over to our house for whoever misses it that day. We can't take her to indoor malls, crowded restaurants, etc. We can do outside stuff, and are so happy it is summertime!

What can we do?!

Everyone has done so much already. We feel SO blessed, and so loved. The about of support has been amazing. I love that so many people are praying for our family, and for our Ruby girl. She is so special. I was thinking, that maybe you can have your kids draw/paint/etc. a picture for Ruby, and let’s get her door decorated!

Is there anything specific you want us to pray for?

Please pray that Ruby will remain pain-free and not itchy. Please pray for her comfort and strength. Please pray that we can have patience and understanding of our trial. Please pray for the donor family, and what they will be going though. Please pray the perfect match comes our way soon.

Ruby is just SO adorable, I can't even stand it!! :) Her name is adorable too, how did you decide on her name?

Ruby is a family name, as well as Jane. Ruby was my great aunt’s name. It just fits her perfectly. We call her Rubes mostly, and Rubers, Shubers, and my Dad likes to call her RJ.

Is there even any way to donate blood if Ruby needs it or anything else we could to do help?

Blood for Ruby has to be donated here at the UCLA Blood and Platlet Center. You can (and should!) donate at Red Cross and other organizations, but it would not be directly for Ruby. She is type A+, and can receive blood from O+/- and A+/-. If you would like to go, there is free parking, and cookies and juice! You just would need to tell them at the front desk you are doing a direct donation for Ruby Taylor. (Also, take your Iron vitamins beforehand!)

Any more questions???

What do ya wanna know?

I came back to blogging right in the middle of all of this jazz.
I know I have done a terrible job of explaining things, so do you have questions?
I have been getting a lot, so I thought it would be a good idea to just do a post just to explain some things you have been wondering about. Ask away. I am pretty bored at the hospital today, so it will give me something to do!

Kinkos Breakdown

I have been pretty good with all my emotions these past months. For the most part I deal with stuff internally, and hate crying and showing outward signs of my pain.
Last night, I lost control.
I had been at the hospital since Tuesday morning. I made the best of the week, and had a good attitude. Matt came up last night to relieve me, and it was like I knew I was off duty mentally and physically, and instantly got tired. The drive home was hard. I had the air blasting in my face, the music up, and trying to keep my heavy eyelids open.
I needed to stop at Kinkos to pick up a poster for an event that our community is holding tonight. They offered to have a table set up for Ruby, and a friend made the poster and I had not really seen it other than a small email file.
Well, there was some mix up with the order, it wasn't want I needed, and then I looked down at the huge poster and saw a picture of my baby girl in the hospital, and it just sent my over the edge. I quickly said, "I need something this big, that doesn't cost that much, and I am going to cry, so can you just figure it out for me!" And then I lost it. There were three men working at that Kinkos last night at 10:30, and they all were probably wishing they weren't! They were so sweet and told me not to worry and they would figure it all out for me, and a few minutes later sent me out the door with puffy eyes, a hug and my items.
Sometimes I just need a good cry. Sometimes I just need to have a weak moment. Sometimes I just need to grief over the fact that my Ruby is very sick.
But, then I get myself together, say a prayer (or a hundred) and I am good to go for another week or two.
Just wish the breakdown wouldn't have been at Kinkos!

Our Summer

Ruby Jane, enjoying her first summer!

Ruby and I have been having a girls week up here at UCLA. After a mini-breakdown, after news that we would be here until transplant, we decided to make the best of it.

I made a trip to Target and bought a bath rug to put in the bathroom, some hot pink and white zebra sheets for Ruby, and a few other items to make #5337 feel like little more like home.
I brought up some work out DVDs, my yoga mat, slippers, and nail polish.

People watching.

We have a new rule, us girls, that we go outside for every meal. Usually we cruise through the cafeteria first to pick up a salad, or a Diet Coke (with lots of lemons). We are quiet the spectacle. Picture this: Tired looking mom, pushing cute baby in stroller that is hooked up to several IVs, IV poll tied to the stroller, and mom trying to balance the food tray. Oh, and I forgot to mention my front tire of my stroller has been acting up, so most of the time we are headed in the direction that we don't want to be going! I get a lot of looks, offers for help, and looks of pity. But, I kinda think it is funny. It is a challenge each day to see how much of my Diet Coke I can keep in my cup before I actually sit down. Half of it usually ends up on the tray.

Cancer survivors doing yoga. They were using "our spot" so we just watched until they were done. Talked to a few and heard some amazing stories!

I usually bring a blanket and we find a shady spot and lay on the grass and look up at the trees together. Ruby loves to be outside, but it makes her sleepy! So, I read while she snoozes. I decided that if we have to be here all summer, then we will spend that summer outside, under the trees, and enjoying life.



Good plan, right?

someone

There is no turning off this racing mind of mine.

When we were at home with Ruby, there were times when things felt "normal" and I would forget for a while.
But, those moments have pretty much vanished.

Ruby waits. She waits and waits. She is such a little fighter. Her score has just been creeping up over the week, but no calls yet. I am starting to get anxious. Each time my phone rings from an unknown number, or a member of her teams comes through the door, my heart skips a beat. We pray for the day she can get her new liver, but we are scared out of our minds at the same time.

Many children we have met, have illnesses that are not as curable as Ruby's. I almost feel guilty at times thinking that one day we will have our life back, and more importantly that one day Ruby will have her health back. That is just not a reality for some of these kids. At least there is a cure for her, as scare as it might be.

I find myself thinking about her donor all the time. Somewhere out there, someone is going to give Ruby the gift of life. How can I ever repay this family? I have been praying for them. I don't know who they are. I don't know when we will meet. I don't know how they will come to the decision in their grief, but they are going to be the most important people in our lives. Our heros. Ruby's hero!

One of her doctor's just came in and told me that they have started getting calls for possible deseasded donor livers for Ruby, but none of them have been good offers yet. Thankfully, several people have stepped up, and would like to be tested to see if they can be a living match for Ruby. Our doctors would like to have that as a back up plan right now, just to be save.

Thank You

Waking up this morning I had a very full heart. Thinking of all the prayers that had been offered, and that would be offered on this special day, felt like being wrapped in His arms.

I bore my testimony at church today, and the only thing I remember saying is, "I know Heavenly Father knows what we need, and we need her." It is true, we need that little girl. She is going to make it through. She is going to get that liver. She is going to beat all the odds, and she is going to be a strong little girl. I just know it!

It was a good day.
Ruby was smiley and happy.
We were together, strong, comforted, and reassured.
Thank you for praying for our Ruby, and for our family.

He Hears Us.

This, I know!

Her story

It was surprisingly therapeutic to tell a complete stranger our whole story from the beginning. I felt like we needed to pay him as he was walking out the door.
Here is the link to the article: "'Little Jewel' Needs Liver Transplant..."