Kate for the day!

I needed some time with my Kate. My mom brought her up to me, and I wanted to just gobble her right up. I miss my big baby. She has been through a lot in the past four months, and she is a trooper. She has really done a lot of growing up, which makes me feel a little robbed. While my mom and grandma stayed with Ruby, Kate and I went for some ice cream. It was the first time I had been outside of the hospital since Wednesday, and the sunlight hurt my eyes. It felt so good to get some fresh air, and hold that chubby little hand in mine.

UCLA has an amazing Child Life program, and Kate just dies over the playroom. She painted, colored, played dolls, rode on power wheels, and had a few volunteers all to herself.

She was so excited to see her Ruby. And Ruby lit up a bit when she saw her big sister. She has not been smiling, but Kate managed to get a half smile out of her!

We planned to have Kate up here with us this weekend, but Ruby spiked a fever, so we had to send her back to Grammy's tonight. It broke my heart a little getting her stuff together to go back. She is such a cute thing and has the best attitude.

As we were walking out the door, she said to the nurse, "Take care of Ruby!" And then added, "Matt will stay here."

Kate has been Ruby's little protector, and takes her job very seriously. I was so touched that she wanted to make sure things were squared away before she left, and that she also wanted the nurse to know that someone would be with Ruby at all times.

I am so blessed with these daughters of mine.

Unloading

Ruby's tiny little hands tonight

It is quiet right now. The most quiet it has been all day. I can just barely make out the nurses laughing outside at their station. A steady beeping from the room next door.

I am alone with my thoughts tonight. I can't sleep. I can't turn off my mind. It is racing and racing, a million miles a minute. All day I have been worrying. Thinking of questions, and ideas, and trying to get answers out of doctors.

After grilling her doctor tonight, she said, "She just really needs a new liver." No matter what I ask, no matter how hard they try, in the end, the only cure for her is a new liver. It is starting to really feel real to me. She is developing symptoms quicker and quicker, and the complications are getting more serious. They showed me an x-ray tonight, and her poor little lungs are being pushed up from all the fluid in her belly. She has been breathing very fast this past week, and tiring out quickly.

I tried to pick the doctor's mind about any type of time frame, and she said, "A couple of weeks, maybe a couple of months." I tried very hard to keep my composure until she left the room. I have known she needs a liver transplant for over a month now, but to hear her say that it will be that soon, just makes my heart sink.

They had us watch a video about the surgery last month. One doctor being interviewed said, "Some parents are so shocked when they see their child come out of surgery because they will look dead." This phrase just keeps running and running through my head.

I can't believe my Ruby Jane has to go through this.
I just can't.
How is this fair?
How is this ok?
It's not.

She should be home. She should be home, sound asleep in her crib. Unhooked from all these monitors, and not being bugged every hour. She should be pink, and chubby. She should be happy, and playful. She should be smiley and giggling. She should be a normal healthy little baby. Instead she is facing this huge and painful trail, a fight for her life, and she is only 4 months old.

I can't stand it.
Tonight is a hard night.

Just an ordinary Tuesday. HA!

Little lovey.

Rubes is not feeling so well today. Her white blood cell count is elevated, and she has been running a slight fever for the last few days.
Her Dr. thinks she has an infection from all the fluid in her belly, or possibly in her liver. Her liver and her spleen are both enlarged (more than usual for her.) They just preformed a procedure (that I got kicked out for) to get a sample of the fluid, to be sent to the lab for testing. We should know by tonight if that is where the infection is. They are also running a series of other tests.

Here is her very full tummy. If you look closely you can see her scar from her surgery in March. They did not sew her muscles together properly, so now she has a hernia there (lower left). It protrudes a lot when she has a lot of fluid or when she cries. They told me that will be repaired during transplant.

She slept pretty bad last night, and has been very fussy and just wanting to sleep all day. After a dose of Tylenol, she seemed to perk up a bit, and I got a few photos of her smiling!
They are going to restrict her fluids even more, down to 6 oz a day. So, mostly everything will be coming from her TPN. She will also be getting some more Lasix to help take off the fluid, and more Albumin as well.
I am off for my CT Scan in the building next door! Hoping everything looks good with my liver, so I can keep moving forward with the processes of becoming a donor for her.

A new normal.

I was 18, sitting in the passenger seat, and watching the world go on as normal. I had just said goodbye and watched my grandfather pass away. It was so baffling to me that the person driving next to us, had no idea what we had just gone through. The people walking down the street, handing hands, acting like like nothing had just happened. Why would the trash trucks still be in operation? I felt like the world should just stop for a minute. But, it didn't, and it doesn't.

I sort of feel the same way right now. I am sitting on the 5th floor of the hospital, looking down on a busy town. I see Frat houses. I see students on their way to class. I see the the city bus dropping off a load of people. I see someone dumpster diving. Everyone just living their life.

Yesterday I woke up with the sunshine filling my room and my husband kissing me goodbye for the day. Yesterday I made breakfast for my Kate Bug. Yesterday I cleaned my house. Yesterday I watered my flowers. Yesterday I took out my trash. Yesterday I did the dishes. Yesterday I played dolls. That was my life yesterday.

Today I woke up in room 5333 and two nurses and a doctor in my room. Today I have worried. Today I have prayed. Today I have watched my little and wondered if she is in pain. Today I will have a CT scan to see if I can be a donor for her. Today I will meet with her doctors. Today I am away from my Kate Bug. That is my life today.

This new life that I have is starting to slowly feel normal. I can pack bags for the whole family and be on the road in an hour. I am starting to recognize nurses and doctors all over this hospital. I know the janitor's name on the floor. I am not confused when I wake up in the middle of the night in a strange room and monitors beeping.

When this all started, I was angry that I was going through this trial, and the world around me was still turning as it did before my baby was sick. But, now I am realizing that this is my new normal. It is just my life right now. I know it will not be like this forever, but this is it for now. And that is ok.

A little heaven tonight.

Yesterday was a pretty "normal" day, which I really wanted it to be. It was Kate's 3rd birthday party. She wanted a Princess Jumpy House, and all her friends to come. She got her wish! It was such a fun day for her. She has been put on the back burner these few months, and we really wanted her to have a day that was all about her. We thought about cancelling it a few times, but knew it was something that she really needed right now. I am so glad we did it! (post to come)

In the middle of the craziness of the pinata, as I was watching my little birthday girl with all her friends, and my phone started to buzz in my pocket. I got a little nervous seeing as most the people that normally call me, where there. Then I saw the dreaded area code of 310. LA. My heart sank, and I panicked a little bit.

It wasn't "the call", but it definitely gave me a taste of how it might feel. It can come at any time. In the middle of breakfast, playing dolls with Kate, during bath time, or during a birthday party. It is like this dark scary cloud that just hoovers over. Those safe moments, are no more.

The night was a long one with Ruby. She was up most every hour. It is always scary when she cries and cries, and we can't figure out how to calm her down. I held her and rocked and rocked her to sleep. And then I just cried watching that sweet little face. She is so innocent. She has no idea what is in her near future. My heart sinks thinking about getting that call, driving her up there, and handing my tiny baby over for the fight of her life. I can't stand it.

Her belly is big today. Too big. I know she is filling with too much fluid again. Her poor little eyes are even puffy. All she wants is to held and loved. Oh, and binky and her little blankie, just like her sister.

Tonight she and I escaped up to her room. Light pink jammies on, and her little hair all combed. I am only allowed to nurse her once a day, so it is a time I look forward to, and savor every night. I rocked her and nursed her, all the while singing. After she was done, I rocked and sang to her some more. I swear she was looking straight into my soul. And her tiny, little, warm hand softly caressed my cheek and lips. It was heaven on earth.

I told her I loved her. I told her everything was going to be ok. And I prayed. I asked for a few things, but mostly I thanked. I thanked my Heavenly Father for this sweet baby. I thanked Him for sending her to our family, sending her to me. Thanked Him for picking me to be her mother. Thanked him for trusting me, with her. Thanked him for the things we have learned, and the things we have yet to learn from this trial.

I sure love my baby girl. And I love our little stolen moments away from the world.

Photo by Jylare

This is Me.

Hi friends,
It's been awhile. I guess I have been ignoring this place of mine on the internet for sometime now. I am realizing it has been on purpose. You know the stages of grief? I guess I have been going through something similar. I feel like I went through the anger, bargaining, depression, and the acceptance stages very fast. But, I have been stuck on the denial and isolation steps in my own way. In my own little world with my family I am honest. But I realize that I have been holding back with everyone else. I think I felt like once I just put it all out for everyone to see, that it is real. I am one of those moms with a sick baby. There. I said it. Wow. Here come the tears. I guess that is healing. I have a sick baby. Ouch. That hurts my heart. It hurts so bad sometimes that it feels like it is about to break into a million little pieces.

I have a hard time going on Facebook. I have a hard time reading blogs right now. I don't want to watch TV, listen to the radio, read or socialize. I just want to be. Does that make sense? It seems like anything other than just being a mom and a wife right now is just taking away from what I should be focused on. It just seems so trivial. I am slowly figuring out that I need a break from my stress, and doing some of those things are good for me. That is why I am going to start blogging again. But, it is scary. Blogging about my life means it is time to fess up and to get real with what we have been dealing with. Unfiltered pictures of Ruby? I feel like once I do it, you will realize how sick she is. Why do I have such a hard time with that? I guess it just makes it feel more real.

Everyone always says, I didn't think it would happen to me. The first few days all I could think about where the odds. Something like one in a million. So, out of a million people, why me? Why my baby? But, here we are. We are dealing. We are moving forward, and sometimes backwards, but each step means we are closer to something better.

So, welcome back to my blog. I am gunna take this a step at a time!

Starting....with a very glamorous picture of me. 6 am in the hospital after a sleepless night. How is that for real?

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.