Ruby’s Story

 

 

 

On January 5th, 2011, our sweet daughter, Ruby Jane Taylor joined our family.  We were thrilled to finally have Ruby in our home, after anxiously awaiting her arrival. The first two months of her life went by with out a hiccup. She was the sweetest baby that ever was. We were beyond happy to have two perfect daughters in our happy family.

At her two month check up I brought up the fact that I thought she was looking jaundiced still. When her pediatrician ordered STAT labs, I was a little worried, but had no idea what the coming months had in store for our family.

The next day we were told we were being admitted to CHOC for further testing. Days and days passed with out any real information. After about a week, they suspected that she had Biliary Atresia. The next day, she was taken to the Operating Room to have the Kasai procedure. However, when they opened up her tiny little body, they discovered bile ducts, indicating that she did not have BA. They took a biopsy of her liver, and pretty much sent us on our way once she had recovered for surgery.

My mother’s instinct told me that something was very wrong, and we were not just going to sit around waiting for answers. I researched and researched, and learned everything I could. I finally got a number for a doctor at UCLA that I was told was the guru of Peds Liver. I called her office for a week straight, several times a day, until I finally got a hold of someone.

Ruby was admitted to UCLA for more testing, and after about 2 weeks, we had a diagnosis of Caroli’s Syndrome. Large cysts were blocking the biliary tree in her liver. She was immediately placed on the Liver Transplantation List. That was in March of 2011.

Both my husband and I went through the process to be worked up to see if we could be a match to donate part of our liver to Ruby. Sadly, neither of us were matches. We had 2 other people go through the process as well, again, no matches.

It was a very scary place to be in. We felt helpless. There was literally nothing we could do for our baby, but wait for a deceased liver to become available for Ruby. Even though we were scared, we felt very hopeful that she would make a full recovery and be home with us in no time after her transplant.

Ruby was able to be at home, but with her weight quickly dropping, she was eventually re-admitted, and placed on TPN. She was in and out of the hospital until about June. We would spend a few weeks in the hospital, and a week or two at home. Her condition escalated toward the end of June, and we were again admitted, and told we were going to be staying until a liver became available for her.

She stabilized once again, and we begged to take her home. We went home with her mid-July. We got one amazing week at home. All four of us just couldn’t get enough of each other. We had not spent very many nights at home all together, and it felt so great to finally be HOME!

At the end of the week, we noticed Ruby becoming more and more lethargic. Then she spiked a fever. We got to the hospital just before she went into septic shock. She spent a long week in the PICU, and then stabilized enough to be moved to the normal floor. The septic shock took a huge toll on her liver, escalating her PELD score very high. She had 3 offers in one week, and none of them ended up working for her. It was a crazy roller coaster of emotions. We thought we finally would end this long terrible road, and that she was going to get her gift of life, but each time it was not the right one for Ruby. We were confident that the “perfect” liver was out there for her, and we were just waiting for her turn!

A week after leaving the PICU, we found ourselves wheeling her crib back down the hall to the PICU again. Her condition worsened very quickly on that Monday.  Her kidneys began to fail, causing a lot of problems for her tiny body. She was intubated on Wednesday to help her retain any energy she had, and enable her to breathe with out any effort. On Wednesday night, she coded, but made a strong come back. Again, we waited that night for a liver. Again, a no-go. She was placed on dialysis to help take off the fluid she was retaining, but eventually her body could not handle the dialysis.

Thursday was a special day. I was able to climb up into bed with Ruby. I had not been able to hold her, and it felt so good to be able to lay next to her, and snuggle with her.

Thursday night we waited and waited for another liver. Her surgeons were out looking at a liver for her, when she coded for the final time. She passed away on Friday, August 12, 2011, at 12:25 am. She was seven months and 1 week old.

She fought a long and hard fight. She was the sweetest baby though out all of her trials. She would smile at us, even when she felt terrible. She has inspired thousands of people, around the world, to live life to the fullest. She started an incredible legacy, and we will carry that on for our daughter.

To read more about Ruby and her fight, please visit the Taylor Family Blog.

To watch a short video of Ruby:

http://youtu.be/bWYEbi4u-E8

8 Comments

  1. on November 4, 2011 #

    She is beautiful. My prayers are still with your family, hoping the grief will be a little more bearable, that your faith will continue to bring you some sweet moments of peace, that your memories of your sweet darling girl will stay perfectly in your heart. I love my Ruby Jane bracelet and it brings me strength and eternal perspective numerous times a day. Thank you for sharing your family story with all of us.

  2. on November 8, 2011 #

    November 8, 2011. What a beautiful family. Your strength and love of your Dear Ruby is Unmeasurable and the awareness that you are providing to so many is Unbelievable. I am a mom of (two) young girls and my heart goes out to you and all of your family. Over the years I have given blood and as of recently have become an Organ Donor and it is all in the name of your Ruby Jane. I live in Charlotte, NC and your awareness has reached the East Coast. Thank you for your story and thank you for instilling in me the gift of being an Organ Donor. God Bless.

  3. on November 8, 2011 #

    I just wanted to let you know that when updating my drivers license, my husband and I registering as organ donors. Your story is inspiring and I wish the best for your family and Ruby’s memory.

  4. on November 18, 2011 #

    I cried the whole time reading this!! I’m so sorry for your loss. I know say those words will never be enough. If you want to get a run set up here in Portland I will help in anyway I can. You made me love Little Ruby so much that if I can help I will. With much Love, Amy Profitt

  5. on December 9, 2011 #

    I stumbled across your story from the Giles family blog. I am so sorry about your loss. We have had a year of open heart surgeries and hospital living ourselves. It is not fun. I hope your heart is at peace as much as it can be. Some people dream of seeing an angel, you got to hold one. My heart is with you.

  6. on January 9, 2012 #

    Just signed up to be an organ donor. Thank you for the sweet inspiration beautiful Ruby and Ani.

  7. on February 20, 2012 #

    Dearest Taylor Family –

    I can’t tell you how sorry I am for your loss! It was not terribly long ago!! I certainly understand that you are still grieving!! Also, over a month ago you celebrated what would have been Ruby’s first birthday!! That was surely a very dffiicult time for each of you!!

    I understand the need for donors and appreciate the awareness you are hoping to share with others! I know about choosing to be a donor and indicating it on our driver’s licenses! I am a donor and an advocate!

    When I got toward the end of Ruby’s story I was taken aback. The date Ruby died was the birthday of my deceased son, Collin! Collin was born in 1975 with a serious heart defect so I know a little something about having a ‘sick’ child too! Wonderfully, we had lots of time with Collin! He was 28 years old when he passed in April 2004. Collin too was a donor! He didn’t have ‘donor’ on his Utah Driver’s License but I know that because of the person he was he would want to benefit others in any way he could ! Utah (Intermountain Donor Services) has an annual event where they acknowledge families of donors. Recipients also speak sharing their experience and gratitude! Utah also creates donor quilts where we can create a quilt square in memory of our loved one. The quilt(s) are displayed at the annual donor recognition ceremony!

    I am originally from Utah but have lived in Southern California siince 1995! I don’t know if they have any of the things I mentioned above here in Southern California!

    You may wonder how I came across your foundation for Ruby! My daughter is 23 (next month) and getting married in August. Her planner, Bree, gave us Brynn’s name as one of the possible photographers for the wedding. Brynn has wonderful pictures of your precious family on her blog! I then followed the link about Ruby!

    Again, I am so very sorry for your loss of Ruby! Since I am ‘older’ I feel I can offer unsolicited advice!! I don’t know if you attend a grief support group or not! I did briefly but then chose to grieve in my own way and on my own time frame! That is one of the things I want to say to you — don’t let ANYONE tell you that you should be finished grieving ‘by now’, etc.! No one has the right to tell you how to grieve or how long to grieve!! Even if they have suffered a loss too!! Even if it is a similar loss!! Be good to yourselves!! I feel a loss of a child is something one never ‘gets over’ – but rather we just learn how to move on in our life — especially for the others in our family such as your other daughter and each other!! Don’t feel badly or guilty for talking about Ruby to others! Its your way of keeping her memory alive!! If anyone you may be sharing about Ruby to are uncomfortable or dissapprove — it is totally their problem!! They need to learn to ‘deal’ with it – you don’ t need to discontinue talking about Ruby!

    May God bless each of you!! I believe that one day you will be with Ruby again – but this time she will be perfect in EVERY way — no yucky liver problem!!
    Huge hugs to each of you –
    Julz

  8. on April 11, 2012 #

    What a beautiful story!!!!! Tears flowing as I read about your sweet girl! My 4 month old daughter loralei was diagnosed with biliary atresia and had the kasai at 5 weeks , by God grace she is doing amazing with a direct bili of 0.54 at last draw! Praise God, I will be praying for your family