The thing about waves is that they continually come in.
Sometimes the sets are huge, and close together, other times they are small and spread out. But they are always there.

I feel like I am standing right on the edge of the water. Sometimes the tides come up, and I feel panicked, and scared. A huge wave hits me, and I am drowning. She is gone, my baby. I have to live a lifetime without her. How will I do this?

Other times, the tide is out a ways, and I see my toes in the damp sand. The pain is there, but not taking me over. I can enjoy the beauty of the ocean, and the small waves that barely reach my feet. She is always mine. Families are forever. I have 7 months worth of precious memories.

Standing at the edge of this vast ocean is something I have never experienced before, but have been preparing for my whole life. I can swim. I won't be swallowed up, even if it feels like it. I have the faith in my Savior and faith in the Plan of Happiness. That gives me the strength that I need to swim when I am drowning, and to enjoy the beauty when I am not.

Do I wish I wasn't standing in this place?
Yes.

But, I know that my Heavenly Father has me just where I should be.

Waves

Waves of pain and grief and agony seem to keep rolling in.
It seems to be the little things that set the waves into motion. Looking in the backseat of the car, and seeing only one car seat. Tucking Kate into bed, and then sitting in Ruby's empty room. Looking under the kitchen sink and finding her Burt's Baby Bees baby wash. One week I am bathing my sweet baby in my kitchen sink, and now she is gone. My mom asked me to drop my grandma off at the airport at 11am, and I automatically thought it was nap time. It is just impossible to wrap my head around. She belongs here. She belongs with me fussing and caring and loving her.
Usually when you are going through a hard time or trial, it seems like you can proactively help yourself to get though it, and then it is over at some point. I know that this missing will have to last a lifetime. That is a long time. There is no way around it, just have to go through it.
Ruby was so time and labor intensive, that it just seems too quiet around here. I went from constant go go go go, to nothing. I am trying so hard to be the mom I need to be to Kate. She took a backseat to everything for 7 months, and I know I need to gain her trust again. It is a process. This whole new life is a process. I am trying to just take it hour by hour. And most times, minute to minute.
Breath in. Breath out.

The Ruby Jane Foundation

Hi, this is Mike again. Ani and Matt have started the official movement of Ruby's legacy, "The Ruby Jane Foundation."

The foundation has a goal of promoting organ donation awareness, enacting legislation to enable families to make informed and educated decisions regarding organ donation, and to raise money to support the cause.

We have started planning a "Run for Ruby" that will hopefully take place each year on Ruby's birthday. We couldn't be more excited about this and feel like it is a great way to keep the fire burning that our little baby started. We anticipate having a 5k, 10k, and half marathon. Proceeds will go to the foundation and help us to enact the legislation we believe is necessary to help save thousands of people.

Join the movement. Join with us and help make a difference. Visit our page on Facebook and click the "like" button to receive news and updates about our mission.

Go Rubes!

Or click here:

The Ruby Jane Foundation

Last week, exactly at this time, I had the nurse moving tubes and wires and making way for me to lay down next to Ruby in her bed. I had been wanting to so badly, but thought it wasn't possible with everything going on. I was so excited to be able to snuggle up to my baby girl. I carefully climbed up into the bed on her right side. It felt like heaven to be so close to her when she needed me the most. I held her tiny swollen hand with one hand, and rubbed her warm soft tummy, and chubby legs with my other hand. Sometimes a girl just needs her mama, and sometimes a mama just needs her girl. It was a tender mercy. I am so thankful for those moments so close to my Ruby, because 12 hours later she would slip away.

Wrist Bands and Pictures

This is Mike. I have taken the responsibility to oversee the rubber wristbands and pictures of Ruby for my sister. A lot of people have asked so here is the information:

1. Rubber Wristbands: If you would like a Ruby Jane rubber wristband with her name on it you need to sign up to be an organ donor here. Once you are a registered donor in your state visit aniandmatttaylor.blogspot.com and click "yes" at the top right to indicate you are a donor. Once you have done that please email: rubyfoundation@gmail.com and indicate you have become a donor and indicate size (small or large) and color (gray or pink) and your mailing address. If you have requested one and it has not arrived please email us and let is know. Obviously a lot of emails from last week got lost in the shuffle with everything that occurred and probably will not get answered. The best way now is to email rubyfoundation@gmail.com and place an order.

2. Photo of Ruby: At the service we discussed Ruby's beautiful life and and her mission. We recognized that she changed us all and we want to remember that. We have printed copies of a beautiful Ruby picture that we have asked everyone at the service to take home and frame to serve as a reminder of all Ruby did and to remember her legacy. That is all we are asking to receive a picture. Ani has asked that we extend this to all, not just those present at the service. If you would like your own 4x6 Ruby picture simply email rubyfoundation@gmail.com and indicate you would like the picture and your shipping address. This will be sent at no charge to you.

Thank you so much and please help spread the word! Questions: rubyfoundation@gmail.com.

A lot of healing has taken place over the past few days. Yesterday was just what we needed. The amount of love and respect for our sweet daughter was so awe inspiring. Ruby loves being outside, and loves the sunshine on her face, so that is what we will be doing today. We are taking a "Ruby Day".

my arms are so empty. so, so empty. 7 months i held that baby in my arms, and now they are empty. it is such an awful feeling. no words can describe the pain my heart feels. a few days before her passing, i was trying to think of words to describe how my heart felt watching her suffer, and the only thing i could think of was my heart being dragged over hot coals. hot coals sound pretty good right about now. there is just no way to write out the anguish i feel. not only does my heart just ache and hurt beyond expression, but my whole body.
all day long i am in a constant battle with myself. one moment being overcome with grief and sorrow, and the next feeling complete comfort in the Plan of Salvation. i have to keep reminding myself of what i know to be true. it is what i cling to. oh, i am so thankful for eternal families.
the spirit was so close the day she passed on. i knew it was coming. i tried to convince myself otherwise, but it was whispered to me so clearly.
nothing really fell into place with her health. it was one road block after another. she was not meant to make it through her struggle. when the "what if's" and the "if only's" creep into my mind all day and night, i have to remember the prompting from the spirit. my father in heaven knew that i needed that. i fought so long and so hard for my baby, and i needed to hear that last day that He needed her Home with Him.
my arms will continue to long and ache for my daughter, but at least i know that she is in the loving arms of our Father in Heaven.

CORRECTION

We incorrectly listed the address of the chapel for tomorrow. Here is the correct one:

30522 Via Con Dios

Rancho Santa Margarita, CA 92688

how has Ruby changed your life?

This is Ani's sister, Danielle. Over the last few months, I have heard story after story of how little Ruby touched so many people's lives. I am working on putting a book together- where all of these precious memories can be in one place. If Ruby has helped you, is some way, will you please send your thoughts to me?

It can be anything big or small... I have heard stories of how people have started praying again, have gone back to church, have committed to a different lifestyle, have stopped doing dishes/folding laundry and snuggled their kids instead, have taken an extra minute at bedtime to read another story and give an extra kiss. For me, I made a promise to Ruby that I would be more patient and gentle with my children. Every day, I remember my promise to my niece and I am committed to not letting her down. If you can take a moment and send those thoughts to me, I know that Matt and Ani would love to read how their little baby has changed your life. Ruby was an example to us all and I know that she changed more lives in her 7 months, than I could ever hope to in my lifetime.

You can send me a message on facebook: Danielle Bewsey Edmonds
or email at: dne29@hotmail.com

There will also be a table set up at the service on Tuesday- where you can write your thoughts down.

our hearts are broken. yesterday morning when i woke up, it was so quiet. too quiet. all i could hear was the clock ticking. i am so thankful for my knowledge of eternal families, and that each second that goes by brings me closer to being with my sweet baby girl again.

Celebration of Baby Ruby

This is Mike. I can't express how much all the positive comments and thoughts have helped my dear sister. I have one more request for everyone: If you have been influenced in some way by baby Ruby come show your support as we celebrate her life this coming Tuesday. Let us make this standing room only and a show of overwhelming support for the Taylors. I can tell you that each person that shows up lifts the burden in some small way.

Service
The Church of Jesus Christ of Latter-Day Saints
30522 Via Con Dios
Rancho Santa Margarita, CA 92688
Tuesday, August 16th, 11:00am

Interment
El Toro Memorial Park
25751 Trabuco Road
Lake Forest, CA 92630
Tuesday, August 16th, following the service

Our sweet Ruby Jane went Home to be with her Father in Heaven last night. We both knew that her mission in this life was completed, and it was time for her to go Home.

we have another offer. it sounds like a child. they will need to be able to split it. ruby needs to stay stable. she has had some questionable stats today, so they are watching very closely. keep the faith. keep the prayers coming. this has got to be it!!!!

Living Donor

This is Mike. The response has been overwhelming from family and friends on the living donor front. We are truly grateful for this but need to make sure we are not working against ourselves. UCLA has one coordinator working on Ruby for living donors and our concern is that she is being inundated with calls and is having to work through all of the messages and losing time. My intent with this post is to clarify who would be eligible and therefore reduce the amount of calls that wouldn't be a match based on the criteria we know up front.

1. Small frame and body-There is no exact body or weight ratio they are looking for. All we can say is that our cousin we thought would be match was too big at 5'4" and 115 pounds. Fit and healthy donors are always preferable.

2. Cannot be breast-feeding

3. Must have healthy liver (no heavy drinking, smoking, drug use, disease)

4. Blood type must be A or O positive

5. Age-younger the better, must be 18 at least.

6. They would like to avoid young mothers, although this will not preclude you from donating

7. IMPORTANT-Please spend some time educating yourself on the surgery. This is not a simple surgery and comes with a fair amount of risk. 20% of the cases end in complication. You will spend 6 hours under for the operation, two days in the ICU, and another 7 days in the hospital (approximate times). Women will not be able to become pregnant for 12-24 months. Risk of death is negligible as that has occurred only once since 1985. Here is a link that explains some of the components. Please visit this page and explore the info available:

http://transplants.ucla.edu/body.cfm?id=66&oTopID=37

8. Lastly, for ethical reasons, the family cannot answer questions about the process or specifically if you would be a match. Please go through everything above, make the decision if you would like to proceed, and call the coordinator at UCLA at 310.794.3223. Her name is Karen. Most likely you will have to leave a message and await a call back. However, if you meet everything above and want to proceed it's worth noting on your message why you are a good match (i.e. small body and frame). Karen has been going through hundreds of calls that have come in trying to determine who could be a match. Keep in mind once a phone interview has been conducted and passed the living donor will have to come to UCLA and undergo many more tests such as MRI, CAT scan, physiological testing, etc.

Again, thank you so much for considering doing this.`` Hopefully the above provides some answers and allow more informed decisions to be made.

Ruby is somewhat stable right now. She is on a breathing tube, as well as constant dialysis. They are hoping the dialysis will remove all of the fluid build up and stabilize her enough that they would feel ready to take her to the OR if an offer was available.
She is at Status 1B right now. She had two calls yesterday. One was too big, and the other was positive for Heb B. We are hoping that tonight or tomorrow we get the perfect match for her. This girl needs it fast. My cousin was not a match.
It has been the longest, ugliest, most frightening 24 hours of my life thus far. There was about an hour where Ruby was literally fighting for her life, and we held her head and whispered into her ear the whole time. She is amazing. She is strong, and she is doing this. Pray that she can keep fighting this fight long enough to get a new liver into her.
Would you please also pray for us? We are struggling.

Update

This is Mike, Ani's brother, and she has asked me to update everyone as to what happened. Around 10:00pm Ruby coded and the rapid response team immediately began work on her. To summarize the very technical medical jargon that was explained to us she was in a "pre cardiac arrest" state where they were worried about her going into full cardiac arrest. Numerous doctors and nurses worked on her for over an hour to get her stable (about 15 people in the room all working very rapidly).

They were able to get her to a stable enough state to take her to the operating room and place a line for dialysis. The dialysis, as explained by my cousin/living donor option/amazing ER nurse, will do a ton to help her. The poor baby right now is completely swollen, sedated, and in need of the dialysis to help get her ready for the surgery.

In the midst of all this and Ruby crashing the doctors received a call from "up north" for a liver from a child, the best offer to date. The doctors are optimisitic due to the small size of the donor and will be flying there shortly. However, Ruby needs to be more stable before they operate. Right now, they would not perform the operation. She needs to be more stable.

Specificity brings about results. Our desire is to direct specific prayer towards Ruby stabilizing, first and foremost, and then that the donor liver will be a match.

Ani asked me to update: Ruby is being intubated this morning which places her in the highest possible category and the medical team feel like they have several viable options for donors. They are kindly asking that no more calls be made into the hospital for donors as it's bogging down the system (this is amazing!!!). Please spread the word. I will update again later. Matt and Ani are loving all of the support and prayers for Ruby.

Poor Ruby girl had a long hard night. She has not been very uncomfortable until just recently. She was up most of the night shrieking, and it just broke our hearts. It is infuriating to watch your child suffer, and not be able to offer any help. We tried everything. Finally, they order morphine and some oxygen for her, and she was finally able to rest around 3 or 4.
We are hoping to get news today if my cousin will be a match or not. Some people have been asking about the Living Related Donors. They will only consider family, or very, very close friends. They only work up one person at a time. So, right now, my cousin is being worked up, and if she is not a match, then they will move down the line to the next person they have waiting on the list. I am very thankful for all the people that are willing and ready to donate for Ruby. It is truly amazing how many people love this little girl!
We are hoping today is her lucky day. Our lucky day! August 9th has a good ring to it, right?!

My little fighter girl

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.

Happy Seven Months!

My Ruby Jane is 7 months today!
I feel like she has been mine forever. I thank my Heavenly Father for her every single day.


In celebration of her seven month of life, if you haven't already, will you consider registering to be an organ donor at Donate Life?
If we are willing to accept a lifesaving gift, shouldn't we be willing to offer it as well?
So many of these sweet children and babies are just waiting and waiting. Raising awareness about this important cause will save lives.
Over a thousand people read this blog everyday, so it shouldn't be hard to hit 200 donors today! Couldn't think of a more appropriate gift for Ruby's big day tomorrow.
I have a feeling that 7, is going to be her lucky number. I can feel it. It is going to be a good month for my babe.
Spread the word. Donate Life.

(Don't forget to take the poll on the right sidebar once you have signed up! Also, email me your address and we will send you a Ruby Jane wristband.)

My Kate Bug

We know that the storm is right around the corner.
We decided to take advantage of Ruby being on "hold", and take a night off, and enjoy some time with Kate.
My Dad had a sleep over with the Rubes, and Matt, Kate and I headed to a nearby hotel for some fun, real sleep, and a lot of snuggling. I sure miss my big girl. She is changing and growing up so fast, and I am trying to just grasp on to any moments with her that I can.
As much as I wish that her sweet and comfortable life was not turned upside down, I realized this week, that this is a learning experience for her as well. We have tried to keep her away when Ruby is doing really bad or hooked up to a lot of things, but really feel like it is ok for her see her sister in her "less than perfect" state. She is very mature about everything, and has really gotten comfortable hanging out at the hospital. She loves her baby sister, and get anxious to go back to her room when we are in the cafeteria.
I am missing my Kate tonight, and wishing I was jumping on a hotel bed with her again tonight.

Ruby is not doing very well. Her labs are all over the place. They are replacing as many things (blood, plasma, potassium, etc.) as they can in a day, and it is not making much of a difference. She feels terrible, and just wants to sleep all day.
Her doctor just came in and said she is open to accept livers again (did I mention she was on hold for a few days since she had a cough?) She said that she is very hard to manage right now, and we really just need for her to be transplanted soon.
Her blood pressure is low today, and her breathing is fast. If those do not improve at all today, then she is going to probably need to go back to the PICU for closer monitoring.
She is the sweetest little baby. I love her so much, and it is so hard to watch her suffer. I cannot even explain the feeling of the little moments of joy I feel when I get emails from people saying how Ruby has inspired them, helped them get through a hard day, or caused them to start praying again. She is such a special child, and she has already done so much good in her 6 (7 tomorrow!) months of life. She is my hero!

My achy breaky heart

My heart is aching.
Usually the aching comes, and I can eventually shake it by distracting myself with something like giving Ruby a bath, or cleaning up her bedding, or painting my nails. But this morning, it just hurts and isn't going away. When I got up this morning and walked over to Ruby I noticed a tiny little scratch by her eye. I got a wipe, and gently tried to get the blood off. But it wouldn't come off. I looked closer, and it seems like it might be like a broken capillary. The first words out of my mouth this morning were, "How much more will this baby need to go through?" It is odd that little things that push my emotions over the edge.
My heart just breaks looking at my poor girl. Her eyes are tired. Her little body is just tired of fighting and not working properly. It is time to get her fixed up. She still has not given up a smile, it has been 8 days now. I couldn't sleep again last night, so I looked at old pictures of Ruby smiling. I am glad I did, because I dreamed of her smiling so big and had that sparkle in her eye again. I am yearning for that day.
It is hard to be always longing for tomorrow. It is hard not being satisfied in today. I don't know how much longer I can watch my poor daughter suffer through this trial. I know it is in His hands, but I sure wish He would hurry up!
I thought writing through my aching heart would relieve it, but looks like I will need to try some chocolate or a good cry.
I'll try the chocolate first!

Perpective

The old me thought I was tired and stressed out. The old me was unsatisfied with my clothes, my weight, and my ugly carpet. The old me dreaded hearing the babies cry over the monitor, too early in the morning. The old me was bored watching cartoons, and folding laundry. The old me hated making breakfast, and pour endless sippy's full of milk every day. The old me dreaded running errands with two kids to get in and out of car seats and into shopping carts. The old me did not think it was a big deal to spend a Saturday at the beach, or paddle boating around the lake. The old me was tired and grump from walking up the hill to our house from the lake. The old couldn't wait until nap time, when I could have some time to myself. The old me hated doing dishes, and checking the mail. The old me rushed bedtime and skipped pages in bedtime stories. The old me sang lullaby's quickly, and was relucted to sing, "just one more."

What was the old me thinking?!
My heart is literally aching right now to have my old life back, but with my new perspective. What I would give to have my whole family home on a rainy Sunday morning, making breakfast, and delivering chocolate milk on a fancy platter to my little Kate. I want to forget about the dirty dishes, and get down on the floor with my girls and play, play, and play. I would be thankful for that cheap carpet, because it beats none at all. I dream of the day that I get to wake up in my bed, and hear BOTH girls waking me up early in the morning. I will make them whatever they want for breakfast, and turn the music up loud and dance while I make their pancakes (because I know that is what Kate will want.) I will get them dressed and spend time gently combing and doing their hair, and breathing them in. I won't rush them. What is the rush about anyway? I'll load them in their carseats, and give them kisses while I buckled them in. I'll be happy listening to Disney songs as we drive to Target, or McDonald's, or the park. I'll chase them, and tickle them, and push them on the swings. We will spend our evenings playing outside, and cooking dinner together in the kitchen. Bath time will be long and drawn out, just like it should be. Bedtime will have lots of cuddling, and a few bedtime stories read slowly while doing the appropriate voices for Papa Bear, Mama Bear, Baby Bear, and Goldilocks. Matt and I will fall into bed exhausted together, and thank Heavenly Father for this new perspective on life and what is truly important and ask that we might be able to always remember.

Drawing sent to us by a cute little girl! It is Kate and Ruby in their beds at home. I love this.

Not the one!

Can't wait to see her skin return back to normal color, and her eyes to be bright white and blue again!

Well, we finally fell asleep around 1:30 last night, and woke up at 2:00am to two doctors explaining that it was just not the right fit for Ruby. Oddly, I was totally ok with that news. I am SO scared for transplant. So scared. I can't believe I have to send my tiny girl off to this huge 6 hour surgery. It has been more than 3 months we had to wrap our heads around this, and we still haven't. How can we?
I know that the perfect match is out there. It is just going to be an trial and error until we find the right one. That, I am prepared for. It is never a sure thing until she is actually down in the OR. She has a little virus right now as well, so I feel more comfortable giving her a little extra time to get some more strength back. They are recalculating her score today, so she might be even higher up on the list. I know the transplant is right around the corner.

Us girls, this morning.

As scary as this all is, I am so excited for my girl to feel good again. She has not really bounced back from last week like we thought she would. She is on full monitors right now, and probably will be for awhile. Her breathing is a little bit labored, and fast. While her respirations are like they are, they are not following her to eat. She does not have very much energy, and has not smiled since last Monday. She has been throwing up. Her labs are all over the place. She is sleeping a lot as well. She is definitely getting worse. We knew this was going to happen, but it doesn't make it any easier to watch. I am just so thankful that there is light at the end of this tunnel. I am so thankful for good doctors, and technology. 25 years ago, she wouldn't have the chance that this transplant is giving her.
So, we just wait. We feel so thankful for all the prayers being offered up for Ruby and our family. We FEEL the strength and love and support. I can't even begin to express my gratitude. These prayers are literally getting us through this trial.
Thank you.

Ruby girl, trying to take her morning nap.