The Longs' Fantastic Voyage: Trip to California

August 7th - 20th

This is a hard one for me. I'm more of a sharing events, not feelings type of blogger. And this was a hard trip. To be honest, my stomach gets butterflies and feels a little nauseous and my heart aches to even think about it. As you know, I went to California to be worked up to be a partial liver donor for Chris' cousin, Ani's baby, Ruby Jane. You can learn more about their struggle with a rare liver disease at Ani's blog. I went out there super optimistic, on top of the world, so thankful to have the chance to attempt to save this beautiful baby's life, and also a little nervous that I couldn't be a donor. The trip turned out NOTHING like I had expected. I had prepared to spend the next four weeks or so out there, or return home in a few days.

The testing was performed at UCLA Medical Center where Ruby and Ani, Matt, or occasionally another family member had spent the last several months. The testing is supposed to take place over a couple of weeks, but because Ruby was starting to get more sick, we luckily squeezed everything into two days. I had pretty much every test and consult under the sun performed. Including...

Tons of blood tests.

Very hopeful and optimistic.

Super close to the LA Temple (which happens to be across from my mom's junior high school!)

Echocardiogram

And the final test, the abdominal MRI/MRA. As well as many other tests.

It was a slightly frustrating process. First of all, I was pretty much the family's only hope. Sick babies tend to compensate, compensate, and crash. Which is pretty much what happened when I was out there. A few people had been worked up to be donors, and Ruby's name was getting higher and higher on the PELD score enabling more cadaveric or deceased liver offers. So I felt so stressed and so much pressure on me. The thing that was frustrating was not having answers. Sometimes the doctors would make it seem like it was a go, and sometimes it was up in the air, but never a no. Testing started Monday morning, and right before the MRI on Tuesday night it sounded like a go. I even had Chris fly out there super last minute because the surgery may have been that evening or the next morning. :-( Shortly after the MRI was complete, Ruby became too unstable to have surgery even if something worked out, and I found out the doctor wasn't sure if I would be able to be a donor. But it still sounded hopeful. The surgeon called the following morning and said no. My hepatic artery is too small and he was afraid it might clot off once inside of Ruby. I was devestated. Not because I wanted a five to eight hour surgery, four weeks of not lifting anything over ten pounds or driving, and two months without working. But because of me- I was not able to give this beautiful baby girl another chance at life and help relieve five months of both her and her family's pain and suffering.

Ruby Jane Taylor left her family and the thousands of lives she touched to go home to her Father in Heaven early Friday morning, August 12th. The services were the following Tuesday and were more beautiful than I can imagine. This sweet baby had such a large impact on countless lives. There were over a thousand people in attendance, standing room only, if that. After attending the service, if you weren't already LDS, I don't know how you wouldn't want to be. It was beautiful and amazing. And needless to say, sad. I gained a new appreciation for and understanding of families and charity, the pure love of Christ.

I am sure that nobody blames me, but I just have so much guilt and sorrow and even anger that I was not able to be a donor. It just doesn't seem right. If they had used me, there would be a CHANCE this beautiful life would be saved. Yes, there was also a chance that the artery may clot inside of her and she wouldn't survive. But a chance of life. Anger. I'm no liver specialist and certainly no doctor, but doesn't it just make sense to try me, especially when there were no other options. I was 100% willing, all my consults prove it. My artery has supplied blood just fine for the past almost 32 years. I just wish they would've tried. I gladly would've sacrificed this small thing (in the great scheme of things) in order to save that sweet baby girl and the endless pain and suffering it has caused. I can't imagine how horrible it would be to lose a child. When I was pregnant I remember finally understanding how hard it is to have a miscarriage, especially later in the pregnancy. But to lose a child. I just can not imagine. I feel so extraordinarily blessed and thankful to have Keira and that she is so healthy.

I know that Heavenly Father is in control and there is a purpose for everything and that Ruby Jane needed to return to the embracing arms of her Father in Heaven. I know that in time the Taylor Family will be with her again, and that they have been, and will continue to be greatly blessed. They are the extremely special family that Heavenly Father chose, and they accepted, to take on this great burden. Although short, I know that the time that Ruby Jane spent on this earth has and will continue to touch thousands and thousands of lives and even save many. She certainly has touched mine.

The Taylors and other family members have started the The Ruby Jane Foundation in hopes of arising organ donation awareness. You may also visit Donate Life to find out more information about becoming an organ donor. Pretty much anyone can donate something. A single donor can save seven lives and enhance the lives of 50 others.

Part 2- The rest of my trip

The apartment complex in West LA that my grandmother lived and died in, and home where my mom spent much of her adult life until the day I was born.

Kate (The Taylor's three year old daughter) and Keira upon my return home from UCLA Wednesday evening. I am so thankful for the Bewsey's (Chris' aunt and uncle) wonderful neighbor who took such great care of Keira while I was gone. Keira found a new love for tutus and having her paci and blankie all of the time.

I had sooo much fun with Kate and Keira on Thursday and Friday. Kate was such a joy to be around for both Keira and myself. We walked over to Golden Spoon yogurt!

I felt very in the way and Keira and I were able rent a car on Friday evening. We immediately hit my favorite beach, Shaw's Cove, in Laguna Beach. It was a bit cool.

The little stinker takes after her dad and I think she had more fun climbing on the rocks than playing in the sand and waves. ;-)

Then we went to In-N-Out.

And topped off the evening with Trader Joe's.

The following afternoon we went to Murrieta to visit Chris' friends from high school, Marco and Angie. (See our dream home in the previous post.) ;-) They have about 19 and 11 year old sons. Angie always wanted a girl and loved Keira and painting her nails and toenails.

Marco was so sweet (and the family to join) reading Keira her favorite princess book.

On Monday we returned home to Chris' aunt and uncle's to see Chris' dad and grandma! Keira adored them both! She still says "Whiskers? Like Grandpa!" Both Grandpas on Chris' side have whiskers.

The chilly afternoon following the service we went to a San Clemente beach. The sun was just a few hundred feet inland. Pictured below is Chris' Grandma, Aunt Sherri, Matt with Kate, and Ani.

Keira's hair was SUPER curly and I loved it!!! This was during an up-too-late for the girls movie night. Soul Surfer for us and two hyper girls having a blast jumping on the mattress in the family room.