There is no me if I cannot have you

I know for a fact that Ruby was sent to our family for a reason.

I love that little girl more than any words even dare express.

She is special. She is loved. She is a fighter. I am so privileged to be her mother.

Often times I lay here on my "bed" (couch) at the hospital, and look up into the sky. It is hard to turn of my mind when I am all alone here. One night as I was thinking about my sweet girl, I got the strongest feeling of peace and of confirmation, that I was doing what I was meant to do, and Ruby was meant to be my daughter. It was exactly what I needed in that moment of feeling inadequate.
Ruby has blessed our family beyond measure, in the short 5 (almost 6!) months she has been part of our lives. She instantly brightened our home with her tender spirit, and her sweet smile. She has given us the blessing of serving her. She has brought us closer to our families and friends. She literally, has drawn thousands to prayer, on her behalf. She has increased our faith and understanding of His plan. She has increased our love of our Heavenly Father and Savior, Jesus Christ. Ruby has made clear, what is most important in this life. She is only 5 months old, and she is my hero.
Matt asked very special blessing at the beginning of this trial, that Ruby and I would form a very close and special bond. That has truly come about. I am so thankful, everyday, that Ruby was so carefully placed in our family, and that I was chosen to be her mother.
I love my Ruby Jane.

The first time I heard this song by Mindy Glendhill, it instantly became "my song" for Ruby, and I sing it to her often.

I don't mind your odd behavior
It's the very thing I love
If you were an ice cream flavor
You would be my favorite one

My imagination sees you
Like a painting by Van Gogh
Starry nights and bright sunflowers
Follow you where you may go

Oh, I've loved you from the start
In every single way
And more each passing day
You are brighter than the stars
Believe me when I say
It's not about your scars
It's all about your heart

You're a butterfly held captive
Small and safe in your cocoon
Go on you can take your time
Time is said to heal all wounds

Chorus

Like a lock without a key
Like a mystery without a clue
There is no me if I cannot have you

Chorus

image: brynn alyson photography

the sweetest

We had a reporter over here last night, and he asked us to describe Ruby's personality. The one word that sums up this little baby is sweet. She is just the sweetest little thing you ever met. She is going through so much, and still just looks up at me like I am her whole world. I love her so much I am amazed I don't burst.

She woke up this morning very swollen and full of fluid. She laid on one side the whole night, and now that eye is swollen shut. The poor girl. She looks so miserable. I was trying so hard to get a little smile out of her, and sure enough after making a fool of myself, she gave me a quick little smirk. It just broke my heart to see her smiling through her discomfort. She really is the sweetest.

We had an appointment yesterday. Things are progressing quickly. We thought we had months, but it looks as if she will be needing a shiny new liver with in days to weeks now. She score has increased significantly over the past two weeks. She said we are just tinkering on the line right now of staying at home, or being admitted. Once she is admitted, most likely she will need to stay until transplant.

Please pray for her to remain stable enough to stay home where she belongs. Please pray for her comfort. Please for our strength to increase. Please pray for our family, we sure could use it right now.

image by: brynn alyson photography

**update: dr just called and based off of yesterday's labs, she wants her to be admitted. so, off we go.

Living Donor

Matt's not a match for Ruby.
She is so tiny, and both our livers are too large for her.
We are incredibly disappointed that we cannot be her back up plan.

TPN = Why I don't make dinner

The main reason I decided to make our blog public again, was for other families that might going through the same thing we are. I would have loved to find a blog like this when we were just starting out. I was hungry for some real life info!
Because of Ruby's disease, she does not digest food properly. Her body cannot break down fat, or absorb vitamins, etc. So, she was put on TPN, which means Total Parenteral Nutrition. It goes through her PICC line that is in her arm. It goes directly into her blood stream, bypassing the digestive system. Right now she is on it for 16 hours a day. And, to hook her up, and disconnect takes some time...here is what it entails:

2 or 3 hours before needing to hook her up, take bag out of fridge so it will be at room temperature. If we forget then the only way to heat it up is to use body heat. If we were to hook her up with it being cold, it would make her cold!

Then I have to add vitamins to the bag. Wash hands, and then get everything set up. This is the set up for the vitamins. Wash hands again.
Remove caps, and alcohol swap the top. We were taught hold the swab like this so we don't touch the top.
Then draw back 4mLs, push the air into the bottle, and then draw 4 mLs of the first vitamin. Then next, draw back 1 mL, push into bottle, and draw 1mL. Now all the vitamins are in the syringe.Now I have to clean the port that I will be injecting the vitamins into. Since I do not have 8 arms, I couldn't take a picture of this part. I have to swap the top with 5 alcohol swap sticks, 6 iodine swab sticks, and then one more alcohol stick. (If I touch the top, or anything else touches it, I have to start over.)
Once the top is sterilized, then I inject the vitamins into the bag of TPN.

Again, no 8 arms, so this is the tubing that I connect and prime with TPN. I have to squeeze the bag super hard (my hands usually cramps up), until all the tubing and air filter are full of TPN, and there is NO air. Air is very bad to have in the line. So this takes awhile to make sure everything is perfect.
Then I stick the end inside of a package of alcohol and it is all ready to be hooked up to Ruby.

Then the Hook Up:

Wash hands, and get 6 more alcohol and 6 more iodine out. Saline flush also has to be prepared. Wash hands again.
Clean her PICC with the 6 and 6.

Remove all the air from the saline syringe.

FlushWithout touching the end of her PICC with anything and carefully removing the cap of the TPN with out touching it, connect the two. If anything happens to touch them, I have to start all the way back to the beginning.
all hooked up and ready to roll!
Then I have to program the pump. Things for her program know:
Amount to be infused: 332mL, container size: 377
taper up: 1 hour, taper down: 1 hour. total time: 16 hours, KVO rate: 5
Then I connect the cassette to the pump, push start and we are done!
UNLESS: there is air in the line. Then we start over. And we cry.
This is the mess from a very uneventful hood up. Usually it is double, or triple the amount of trash at the end.

So, now you know why I am pretty busy around dinner time. While you are chopping carrots, I am sterilizing my heart out!

There ya go, all you ever cared to know about TPN.

p.s. When we came home her with her on the antibiotics, I had to go into her line 5 times a day. And had to go through most of this process that many times. So glad when that was done!

us

so glad i captured our perfect day on film to have always.

fake it 'til we make it!

i feel like we are just racing against the clock over here. our life can be turned upside down in a split second. each day we have together as a family is precious to me. i feel like i can't get enough of them.

this past week i have been trying my hardest to make our home life as normal as possible. i have just been craving normal. this weekend was the first saturday in 2 months that we have all been home, out of the hospital, and not throwing a party. (ruby's blessing, and kate's 3rd birthday party)

we spent the afternoon in the sun gardening, and i felt like a little piece of heaven.
ruby's little belly has slowly been getting bigger and bigger over the past week. her poor little face is getting puffier too. we spent tuesday at ucla, and thankfully did not have to be admitted, but we might need to go back tomorrow for treatment.

the reality is that ruby is getting sicker. her symptoms continue to come faster and more aggressively as the weeks go on. it is scary to watch her breathing rate increase with the size of her belly. it is sad to watch her itch her little face. it is hard to see her pretty blue eyes be overlooked for the greenish hint to her sclera. i hate that i can only give 6 ounces a day. it is worrisome when she sleeps more and more, and smiles less and less.

it is just all part of this game. this terrible game.
she is going to be worse, before she gets better. that is the reality.
and it scares me.

little ruby dubie has a big belly again.
we were hoping that we could keep it under control at home and be able to stay here.
today she has an appointment at ucla.
i have my bags packed, but my fingers crossed that they can treat her as an outpatient an avoid being admitted.
prayer, as always, is needed.

twins

she wants a horse

we were driving home today, and we passed an equestrian show, and kate begged us to stop so she could "watch her princess horse jump!"
she has a new found love for horses, especially white horses.
she was very serious, and i was eating her up!
love my little bug.

emotions

so up and down these emotions of mine.

last night and today i am kinda mad. i want a healthy baby. is that sound greedy?
i'm sorry, i just do.

i want to be able to dress her the way i want, and not worry about her PICC line, and how long she is connected for the day. i don't want to wake her up at 2am, to flush her line and give her a does of antibiotics. i don't want to worry about her line catching on something when i am picking her up out of her bed at night. i don't want to put plastic wrap on my baby's arm each time she takes a bath. i don't want to be in constant wonder why she is fussy. i don't want to be watching her itch constantly. i don't want to worry about germs. i want to take my whole family to church. i want to take kate to story time at the library, and go to mcdonald's to play! all the things i took for granted? i want them back.

i am so looking forward to the day that we are back to our old routines, and can just enjoy our ruby jane without the constant worry.

not. enough. hours. minutes. or seconds.

The Doctors asked if I was sure I wanted to take Ruby Jane home.
They warned it would be like running a hospital.
I said, "Yes!"

Turns out they were right.

The only thing is, I am also running a daycare!

Holy BUSY.

Ruby is good, but fussy.
Kate is happy, but hyper.
I am relieved, good, happy, hyper, tired AND fussy!
Matt is working, and probably doesn't want to come home to this crazy house!!!

But it sure feels to go be all together again.

Pokes for Rubers

Dear Ruby Girl,

You have been poked way more times than anyone else should have to be poked...but guess what? All these people volunteered to be poked, just for you!!! These are some of your heroes so far!

Daddy, giving blood to see if he can be your liver donor! He had a hard time!
Carly gave blood!
Mama getting tested for you!
Jon gave blood!
Mom and Dad gave blood.
Uncle Aaron gave blood!
Steph and Sheri gave blood!
and Gonzo Wonzo gave blood!

We all love you!

Parking Lot Goodbyes

Wednesday, Target parking lot kisses.

Being away from her is down right painful. When I think about those chubby hands, and those kissy lips it just makes my heart hurt, and my stomach flip. I MISS HER!

I miss making her breakfast. I miss doing her hair. I miss reading her stories. I miss going on "bunny hunts". I miss our cooking sessions, and our snuggle time.

It is so sad that she has to get use to this new nomadic lifestyle that was thrown her way. When I think about what she has gone through in the past 6 months, I seriously can't believe she is so happy! First we moved her to a new house, then we had a new baby, and now we leave her for weeks at a time.
Ice cream run

Kate is in very good hands. My parents have taken over with Kate, and it has been a huge help. It has been good for her to have them for consistency in her life right now. She asked me a few weeks ago where her mother was. And, I said, "I am your mother silly!" And she said, "No, mommy, where is my REALLLL mother?" Ouch! She assured me that I was still her mommy, but Grammy was her mother.

This trial was not just given to Ruby. It was also given to Kate. She has had the rug pulled out from under her, and she has shown what she is made of. I know that she is learning and growing just as much as we, if not more, from this challenge we are facing as a family. I hope she remembers how much we prayed for Ruby. I hope she remembers the fun mornings she spent with friends, and the long afternoons with Grammy and Grandpa. I hope she remembers the fun play time in the playroom with Ruby at the hospital, and the Diddy Riese runs with me while Ruby slept. I hope she remembers how I couldn't get enough of her when I got her back in my arms. And times I let her sleep with me in my bed, just because I needed to spend every last minute I had with her by my side. I hope she remembers how I smothered her with kisses, and a million hugs and "I love yous" in the parking lot of Target when I hand her off to my parents. I hope she remembers the extra love that everyone has given her.
11pm, Tuesday night.

I hope she knows she is just as special, and just as loved, even though we are not there all the time to show her.

When the Doctor's asking, "Why are you in such a rush to get home?" I want to shout, "For every minute that I am here, and not home, is a missing moment with my Kate!"

Oh how I miss my Kate bug.

Still here!

morning nap

It just wasn't our time to leave yet! The team thinks it would be best to wait until Tuesday to be discharged. Total bummer, but that is just the way the cookie crumbles!

We decided not to mope, and we have had a good day. Ruby had a nice visit with Grandpa and Uncle Dave, and then we had a little picnic outside. The second the sun hit Ruby's face, she was OUT! It was so cute.

afternoon nap

A little video of the sunbathing beauty!

I love my friends

click to enlarge

I have the best friends and family, I really do. People are contacting me daily, asking about Ruby Jane, and about how they can help. I can't express how thankful we are for how much support and love we have been given. It makes this burden bearable, knowing how many people are there for us.
One of my best friends, Jenna, has organized this fundraiser for little Ruby girl. Check out the latest Stella and Dot line, and help out Ruby Jane as well!

Miss Popular

Today Ruby and I went on a big adventure! It took a little bit of planning, but we did it! I had to make sure all the IV pumps were charged up, that nothing needed to be done while we were gone, I put her in the sling, off we went with her IV pole.

Every girl needs to sunbathe right? We made the big trek downstairs, and out to the patio. It felt so good to be out in the fresh air, and the sunshine. Ruby loved it. She got lots and lots of attention from everyone walking by. I forgot to charge one of the pumps, and it started alarming, so time got cut short. It was almost getting comical how many people kept stopping us to talk to Ruby. The alarm kept going off, so I had to avoid eye contact and just keep walking just to get back to our room!

We both get stir crazy sitting in the room, so we take laps around the floor every couple hours. All the nurses know and love Miss Ruby, and we have made friends with many of the patients too. It sure makes the time go by faster when we get to socialize!

Ruby is doing really well today. We had a longggg fussy night, but she is all smiles today. There is some talk that we MIGHT get to go home tomorrow. She is still on an antibiotic that needs to be given through her PICC line, but I have been trying to convince then that I am more than capable to handle that at home. Keep your fingers crossed! If not, then looks like we are here for at least another week.

How is Miss Ruby, you ask?

I have written several updates on how Ruby is doing, but by the time I am done and ready to publish, something has changed! Little stinker!

We were admitted to treat her ascites. She was so swollen all over, but her little tummy was a like a balloon. When that happens, her lungs are pushed up making it harder for her to breath. So she was breathing swallow and quick breaths, which decrease the amount of oxygen her body is getting. She was very sleepy, and when she was awake, very grumpy. You could tell she was very uncomfortable.

Rubes getting her first blood transfusion. Thank you friends and family for donating!!

The good news is that she has lost about a pound of the fluid weight! Go Ruby! She looks SO much better. Her belly is almost back to it's normal size, and she looks like her self again. She is only allowed 5 oz by mouth a day, and she is allowed to nurse once a day. She has been doing really well with that, and not acting too hungry in between her feedings. All of her other nutrition is given through her PICC line. She is acting SO much better the past few days. She has been sleeping better, and having great awake/play time. She has even been smiling and "talking" a lot lately. We love, love, love that.

Drinking her 1 oz and her big belly.

On the flip side, she has had low grade fevers for about two weeks now, and they have spiked a few times since we have been here. Her white blood count is elevated, which normally means there is an infection somewhere. So far, all the tests they have done, have come back negative for infection. They suspect that there might be an infection in her liver. Since her liver cannot drain properly, the bile that is just sitting around, can become infected. They are going to do an ultrasound a little later today to see if they can confirm that theory.

When her belly gets so full of fluid, her blood has a hard time getting back to the heart, and needs oxygen, so it tries to come up to the surface, thus the spider veins you can see in this picture.

Yesterday, we were informed that they want her here for a couple more weeks. ARG!!! I am thankful that "going home" is still an option for us at this point though. So many children are here long term, and I just have to remember that. There is a small possibility that we might be able to transfer to a hospital that is closer to home. That would be a huge blessing. We are really missing our Kate, and we need to spend more time with her.

Ruby Jane and her Grandpa on a bad day. He can always get her to fall asleep!

We are figuring out this new life a little better each day. The hospital is feeling a little more like home, and home is feeling a little more like a hotel that we get to visit once a week.

The little Miss and her Auntie Danielle.
Since her bili levels are so high, her skin is very very yellow, and the whites of her eye are almost green.

We feel so incredibly blessed to be Ruby Jane's parents. She is the sweetest baby. I just want to eat her up, she is so yummy. So many people are praying for her, and for our family, and we are definitely feeling the blessings from above.

Phew. Those pictures were hard for me to post. I have been avoiding it for some time. But, this is her! This is what we are dealing with.
Since I chose to invite you all on this journey, I need to be honest. Sometimes the hard times have to be acknowledged, so that we can all celebrate the good times when they come! (Right?!)


***Dr's just came in and said, we could maybe go home on the 7th! I'll take it!