Ruby is not doing very well. She is in the final stages of liver failure. Her clotting factors are very high, so she has been bleeding from her nose, and throwing up blood, and urinating blood as well. She is very sleepy, and uncomfortable. Her poor little belly is getting very large, and it is making it harder for her to breath. They are monitoring her very closely for any swelling or bleeding in her brain. They just gave her a very expensive medicine that should help with her bleeding, called Factor 7. It is $1700 for about 3mLs. Hopefully that will give her a little boost and it will help her bleeding slow down. It only is effective for 12 hours, so they will be needing to give that to her around the clock. Her mouth is so dry, and we are constantly swabbing out her mouth with a little sponge with water on it.
My sweet cousin flew in from out of state to be worked up as a donor. We are currently waiting for news if she is going to be a match. I hate the thought of anyone having to go through that. If she is a match, then they might do the surgery as early as tomorrow night. I just wish to badly that Matt or I would have been a match for our girl, and none else would have to make that sacrifice. I am just praying constantly that we get a call in the next day. Her score is currently a 41, on a scale that goes up to 40. So this little girl is definitely in need of this new liver fast. We are just waiting and waiting, and hoping. She can pull offers from all over the county now.
Her tiny body is working SO hard, and she is such a little fighter. She is getting so tired though. I can just see it in her eyes. Today we had some quiet moments alone together, and I rocked and sang to her, and I could just tell that she was tired of fighting so hard. I told her it would be ok, and that her new liver was coming very fast for her. I told her to keep fighting for a little bit longer, and everything will be ok. I am so proud of my strong daughter.
Even though she is tiny, I know she is mighty.
My sweet cousin flew in from out of state to be worked up as a donor. We are currently waiting for news if she is going to be a match. I hate the thought of anyone having to go through that. If she is a match, then they might do the surgery as early as tomorrow night. I just wish to badly that Matt or I would have been a match for our girl, and none else would have to make that sacrifice. I am just praying constantly that we get a call in the next day. Her score is currently a 41, on a scale that goes up to 40. So this little girl is definitely in need of this new liver fast. We are just waiting and waiting, and hoping. She can pull offers from all over the county now.
Her tiny body is working SO hard, and she is such a little fighter. She is getting so tired though. I can just see it in her eyes. Today we had some quiet moments alone together, and I rocked and sang to her, and I could just tell that she was tired of fighting so hard. I told her it would be ok, and that her new liver was coming very fast for her. I told her to keep fighting for a little bit longer, and everything will be ok. I am so proud of my strong daughter.
Even though she is tiny, I know she is mighty.
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67 comments:
What a day. She is so ready for this miracle. I hope and pray your cousin is a match or the perfect liver will come. I hope the waiting ends soon for you and your sweet girl is smiling again. I can feel the angels surrounding all of you from here.
Oh Ani- I hope this works out with your cousin.
Hang on baby girl... she definitely is mighty. so are you.
Ani I am prayinf so hard for Ruby and all of you guys. You have tought me to love my kids so much more intensely that I already do! I can't wait to see Ms. Ruby and you smiling again and playing with Big Sis!!! I cant wait to see 1st year birthday pictures. I know she will get out of this one. Tonight I will go to bed and pray really hard to you guys. Nobody deserves to go through what she is going through... What a lil fighter! Keep strong girlies! lots of love and good energy!!!
Keep fighting Ruby! Sending lots of prayers and strength to you all.
As always, our thoughts, prayers and hopes are with you and your family... and especially with little Ruby. She is so loved by so many.
I dreamt of her last night. She was healthy, strong and happy in your arms. Hang in there!!! I know it's coming fast....She is always on my mind and in my prayers. Heavenly Father has blessed her with you as her mother. You are a wonderful example to me. Sending hugs!!!
I was introduced to your blog by Andrea this evening. I sit here crying for your baby and for you as a mother to go through this. God bless your enormous strength and baby Ruby's! I was blessed with 2 sets of identical twin girls and most people see us and just say things like "Oh goodness, God bless you!" and they never mean it sweet, its more of a look of horror and I really enjoy having each one of them....my 2nd set of twins were almost taken from me many times during the pregnancy (the babies suffered from TTTS). I was horrified so often during the pregnancy and I look at them very often and thank God for letting them not only stay with me but survive it all so healthy bc they have no after affects from the disease. Your blog has made me realize the importance of organ donation and although i already enjoy every second of my time with my kids, I will enjoy them a little HARDER now. Ruby has changed my life. I will follow this blog and add tons of prayers for her from my family of girls. Wishing each of you peace, strength, and health...sincerely, kristy letizia ltz234@aol.com <3
oh, the tears. you can all do this! keep fighting, baby ruby. your time is coming. prayers.
Oh Ani. This post just made me cry and cry. You are a warrior mother. We are praying and pleading for your sweet Ruby. I check in on you guys multiple times a day. Sending love.
Ani, I've been reading your blog for a couple of months now but this is my first time commenting. As a mother myself, I can not imagine the pain you must experience daily as you watch your perfect little Ruby suffer. She is an angel baby, that is for certain. I think of her daily, have offered special prayers on her behalf, and feel connected with her even though we have never met. She is an inspiration to me, as are you. Your level of faith is amazing to me. I can only hope to posses faith as strong as yours one day. You are a wonderful mother and your girls and husband are lucky to have you. You are all lucky to have each other. Tears stream down my face every time I read your posts (especially tonight as I read about you rocking and singing your desperately ill baby, trying to comfort her). Ruby has touched my heart and I feel blessed to have heard her story. She will keep up a good fight and will be healthy one day. I just know it.
All my love to your entire family,
Courtney
I keep checking Facebook and your blog for updates and praying hard for Ruby. Not only is she a mighty fighter, but she has inspired so many of us to treasure every moment. Hoping, hoping, hoping that her liver comes soon!
I have thought and prayed about Ruby a lot today. Our fingers, toes, and everything else are crossed. Keep fighting Ruby!!
i found your blog through a friends blog and i keep checking back to see how your little baby is doing. I don't know you or your family, but reading about your sweet Ruby, seeing her pictures makes my heart cry. I have three kids and love them so much but your story made me realize that i much rather have them fight and argue and throw fits all the time than having any health problem with them. I want to love them more and show them my love more.I'll pray for your little Ruby and your family and i hope that she will be healthy and happy again.Hang in there!!!
Beatrix from Utah
My heart is breaking. I hope she does not have to fight much longer. PRAYING.
Oh, Ani. I am praying so hard for you guys, and especially Ruby. I so wish there was more we could do. I have so much love for that little girl.
Ani, read your post, started crying and immediately my husband and I prayed for you guys. Asking in Jesus name that He'd bring her a new liver. As always thank you for sharing your story with us-inspiring us, and allowing us to pray for you and your sweet family.
You and Ruby were made for each other, Ani. You are both strong daughters of God and are both doing such important work. I am being worked over by sadness for Ruby's awful days (weeks, months) and yet I have so! much! hope! for the days ahead. I am praying for that liver.
Ani I can't imagine all that you are feeling. Ruby is just beautiful in every picture you post. Enjoy those cuddles. We pray the liver comes soon.
My prayers are with you. God will make everything right, you just have to put your hope in him. Bless your baby girl and I hope she gets through this rough time in her little life, and grows to be a strong woman.
you're making me cry again! I love you guys so much and seriously hope for transplant surgery every minute! Ruby is such a strong little angel, but it's time for this pain to be taken away from her. You guys are an inspiration to so many. Thanks for all the updates.
hi, I'm Megan's cousin. I almost died of liver issues this summer as well and I'm keeping little Ruby in my prayers. She is a beautiful little angel and I hope for the best!
My heart goes out to u guys... I had to stop reading as i had tears n choking up.... My prayers tonight are for little ruby.... Stay strong, stay positive... Hugs to ur family n wishes of a gr8 outcome for ur beautiful baby girl...
My prayers for you and your family, I cannot imagine what you are going through, I stumbled upon your page I wish I had some money to donate to you and your family, I am a single mom with little left for food, but your story breaks my hears and makes me realize that there is more in the world than the little things, I will pray for you and your little princess tonight and whenever I take a moment to think know that there is a prayer there for your family, I wish I could offer you more, I really do, but know in my heart that I wish nothing but the best for you and your family.
Oh Ani, she is so mighty. Just like her mother. I am constantly praying for this sweet girl of yours, and for your family. My heart aches you are having to go through this and watch as Ruby fights so hard.
Sending my love and lots of prayers.
My name is Brittany, I was introduced to your blog by team twilight on facebook. I am praying for you and I pray that everything works out with your cousin. I also wanted to let you kno that I am a organ donor and Ruby's story makes you relize how important it is to become one.
Hi ani im mary from tn ive got kids myself and i couldnt imagine what ur goin throiugh i wish there was something i could is there ? My prayers are def. With u and ur family if i can do anything please let me know God bless yall
i had just seen your blog for the very first time and i must say i cried reading the entire thing, i want to let you know as a mother of a 6 month old baby boy (today) you are a very strong women! prayers and love is being sent to you by many, i would love to know how to get a pink bracelet and help out ruby jane shes a fighter and you can tell in your writing, she wont be giving up anytime soon, i know im a stranger and we will prolly never meet but thank you for being a strong loveing careing mother, as i give my son a kiss while he sleeps i will whisper in his ear to pray for ruby jane so she can one day dream of sweet nothings as well. keep your head up mamma and keep fighting <3 Amberlyn Evelyn & Emmett John-Leslie.
PS: i FINALLY signed up to be a donor. yay! ruby is amazing!
When I was a baby girl of only 6 months I had one horrible fall from one table that lead me on a hospital with water on the brain and fighting for my life. The little ruby touch my heart, and I can identify with her.
Now that I had 20 years and see the miracle of being alive, I really hope that she survives too and live all that life has to offer to her. She has a loving family around her, and all of our prayers are with you both
I'm a friend of Megan Terry I guess i should say Papworth now, and that is how i found your blog.... Poor Ruby's story breaks my heart. I have been reading your blog for the last month or two and keep your family in my prayers. You are an inspiring mother, and have really helped put things in perspective for myself and family.
My little guy will undergo some cosmetic laser treatments in december to remove/lighten a birth mark on the left side of his face. When they told me they had to put him completely under with each treatment i about died, especially when they said it takes 5 to 10 times. After feeling sorry for myself and my little guy, i realize that baby's treatments are for complete cosmetic reasons and that i have no idea what it is like to have a sick baby and have no reason to feel sorry.
When I read about Ruby it makes me want to cuddle and squeezes my boys a little tighter and be a better mom. I am sorry for your trial. I hope it lightens up soon and pray they find a liver for your sweet baby girl soon. You are an amazing mom to juggle the needs of Ruby and still be so aware of kate.
Thanks for sharing your families story. You have helped me be a better mom, and focus on whats really important.
p.s.
I am number 257.
Oh Ani...I was sobbing reading this. That last paragraph described one of the saddest yet most beautiful moments I've ever read about on someone's blog. Thank you for sharing such a tender and special experience with all of us.
And thank you for sharing your truly amazing and awe inspiring little girl with us. I would never have imagined I could love someone I've never met as much as I love Ruby.
I will be praying and sobbing for your darling Ruby until her miracle comes! And of course for you and Matt too!
You are an amazing and inspiring mom and you are doing a fantastic job. I just wanted to tell you how much I admire you and your strong family.
Hugs and prayers are on their way up from San Diego!
Praying for your baby girl and for your family. The road to transplant isn't always a smooth one. My mom was lucky enough to get one a few years ago, but not after 2 failed attempts. One wasn't good enough, the other too big. It was an emotional roller coaster. Just as things were looking their bleakest, we got "the call", and my mother was re-born. It really is the miracle of life. Hoping for that miracle for your precious baby girl.
Can anyone go in a test to see if they are a match? If so, I would be honored to. Please post if they can and I'd gladly go in to be tested.
- G
Ani, your beautiful baby girl & your family has touched soo many heart's, I like others have been checking your fb to see how she is doing. I'm in tears as I type this. You have soo much strength, I admire you soo much. I have faith that she will pull through, I'm soo sorry that she & your family has to go through this. I will continue to pray that your cousin will be a match for ruby's liver & she will be healthy, safe again. Sending prayers, hugs your way!!!!
Thinking of Ruby and your family.
I heard about your precious little Ruby from Erin and Jylare. Trying to hold back tears. I found out my daughter was diagnosed with Epilepsy last June. It is so hard to get the news that something is wrong with your child. You would gladly take their place. Hopefully your cousin is a match. Your family is in my prayers.
Your strength is phenomenal. We pray for you daily through tears. We will be anxiously checking to hear if your cousin is a match...hang in there sweet Ruby - you are truly a treasure in so many ways to all of us. Love and hugs and kisses to you all.
I read your blog and it just broke my heart. You're family is really strong and I admire all of you, especially you. I pray that precious little girl gets better. She is beautiful and quite a fighter. I have faith your family will get back to normal and that little Ruby will become a healthy baby. God bless you all.
keep fighting baby girl never give up.
Littlemighty. That is what my friends call me, but I think that it fits Ruby.
I have been signed up to be a donor since I was 16. It's a wonderful thing to do.
As a mother to 3 little girls myself, my heart hurts for you. Prayers for you and your family.
She truly is a fighter. I am praying for your cousin to be a match and to be blessed with a speedy recovery if she is a match. What an amazing person she must be. Please, please be a match.
Thinking of you all, Ruby especially, and sending strength. Here from Twilight.
I've been praying for you & your family. "God works all things out for the good for those who love the Lord and are the called according to His purpose." hold on to Him for strength & comfort through this most difficult of trials because "He will never leave you nor forsake you" I have a little girl & another girl on the way so my heart is breaking for the trial you're in but I know our God is loving you & Ruby & your family right now this very moment & miracles do happen!!! Put all your faith & trust in Him. God bless you & your family! ~Jen Langberg Henderson, NV
I know that she can fight with disease , and i know everything will be ok
i'm praying every night for ruby
also she's my hero
I LOVE YOU RUBY
arianaclub@ymail.com
To the Taylors, Bewseys, Edmonds...and the little fighter, herself...MISS RUBY JANE - May our prayers be answered tonight with the gift of a new liver. I am sending you all my continued love, strength, and harder than ever prayers right now. Ani, you are the best mother in the world to this beautiful little girl of yours. She is so lucky to have YOU be the one singing to her, as you are music to her ears. I'll be dreaming of sweet Ruby tonight and praying that the rest I get transpires to her body. Yes, she IS mighty. Love you!
I pray she gets her miracle. I know what its like to almost lose a child. I hope your cousin is a match.
Hi there..
I'm a mom of twins one of which was born with Biliary Atresia. Similar disease in the course, but we have a surgery called a Kasai that they can try before transplant.
Reading your posts took me back 10 years.
Good luck with your journey I wish they could find a way to cure liver disease!
Hang in there, Ruby Jane! ....
I found your blog on one of the Facebook Twilight sites and had to write to you. I believe in the saying that, " Don't take your organs to heaven, heaven knows we need them here." Hope you find your match. Sweet little Ruby Jane I am praying for you and your family. You are one tough little cookie, stronger than half the adults in this world ~ you keep fighting girl, you can win this battle! I will keep praying day & night for you all. Much love.
Oh Ani, I still follow your blog like so many others, and cannot tell you what a change you and your little girl have made on me as a mother. My husband is gone so much that I couldnt wait until bedtime/nap time. Now, I am better because of you. I am a better mom to my kids. I pray for you and your little girlS! You will make it through this, and so will she.
We learned about Ruby through Jylare Smith our daughter in law. Know that we have been praying for little Ruby for a month now. May you have peace in your hearts.
If I am a match, I would be honored. How do I go about finding out?
May gods mighty hand be on precious baby Ruby and the family. I pray for healing in her little body and a divine miracle. I pray for that match to come and pray for complete healing. By the stripes of Jesus she is healed we have faith to believe this for you Ruby! Stay strong baby girl and mom, dad And big sis Kate!
I saw this blog through Team Twilight last night and my heart is absolutely broken for little Ruby. I have an almost 4-month-old daughter and an almost 3-year-old daughter. I feel as if I am like you, two girls, similar ages, and the thought of my little baby being sick like that absolutely has me nauseous. I prayed for you last night and I will continue to pray that Ruby gets the liver she needs. Please Dear God, let this precious baby get her liver. Amen.
I will continue to check back, and I hope so very much that good news is on the horizon.
Courtney
i just love the fact that this little girl has touched so many people...as i read each and every one of these comments...each one individually beautiful and sincere. you have so many of us praying diligently. your sweet rubi, such a special daughter of God...and watched over closely by Him. so lucky are you to have been chosen to be her caretaker, her cheerleader, her mother...what a beautiful honor. remember that. you were chosen to be this for her...and you can do it.
Ruby definitely gets her amazing strength from her parents. Every post I read I am inspired to be better, do more, and have a better attitude. You guys are incredible, Ruby is incredible! I am constantly thinking and praying for your sweet family.
I've been praying for your sweet Ruby girl after hearing of her story from several mutual friends. My son is just two weeks older than Ruby and every time I look at him I am reminded of Ruby and we say a special prayer for her and your entire family. I signed up today for Donate Life as well. Please know you have a world of people thinking of and praying for you. Keep fighting sweet little one!!!
I can't stop thinking about little Ruby. We, too, are praying for her. Praying for a liver to come quickly. Keep it up, Taylor family...it's going to happen! Actually, at this gym this morning I heard "I gotta feeling" and it made me think of Ruby. Maybe tonight will be the night!
what an amazing mother you are! it truly breaks my heart to read of the pain you, Ruby, and your entire family are enduring. hang in there, all of you! thinking and praying every day for a new liver and for Ruby to keep fighting hard until it comes. we have never met her but we love her, all the way out in Indiana! go little miss, go!
Praying for RUBY, praying for KATE, praying for you and your husband as you all sit and wait on your miracle. A miracle that is coming to save your baby Ruby and let her be herself again, out of pain, well rested and back to being her beautiful little self! Keep us posted on your cousin! Hoping it all goes well!! God Bless your family!
Hi Ani, just wanting you to know I am praying for the fam and baby Ruby. My hearts when I hear she is not doing good. Let Erika and Joe if I can do anything even take Katie for play date with Radd. I would love to try to be a donor for her, please call me with info, get my number from Erika. God bless
Reading about what little Ruby is going through breaks my heart. She is such a fighter. I continue to pray for her and your family. Stay strong. Sending positive and comforting vibes to you and Ruby.
I found your blog through our mutual friend Corrine. I can't imagine what you are going through but I want you to know your story has truly touched me. Your family is in my thoughts and prayers.
I have Not Met her, only have I seen such photos- that her Mommy posts for the world to see. I Have not touched her, only through my computer screen..But I can tell you - that your little Angelic presence of a Miracle Baby has touched deeply me. I love her from here and she is not even mine...My heart wants to fight for her, and give her with you, more time. Her very first Photo of Her being held up in the operation room- I noticed her arms stretched out as if she were to fly immediately so soon. Remember, that our Heavenly Father can move mighty mountains You see- Never give up the moments- each one is like Celestial Golden nuggets-Twinkling about your lives indeed. She is so brave and I can learn a lot from such a little fighter, such as she. I love her, and I pray with all my might for you and she. For God Loves Thee--- Tana Lindley-- A person who stumbled upon a Miracle of a small little life who fights and fights...
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