Emma Joan and Taylor Nalani Bailey

Final Memorial Run for Two Sisters One Heart

2010-11-22T12:55:00.000-08:00

Dear Runners and Supporters,

The Two Sisters One Heart Fundraising Event began three years ago for Emma and Taylor Bailey and families of conjoined twins. It was first, designed and intended to be a financial support for the travel and medical costs associated to the first of it's kind double transplant and separation for conjoined twins sharing a single heart. Secondly, to provide financial support to other families of conjoined twins. Many of you know, that our sweet Emma and Taylor passed away on August 10, 2010 in a surgery intended to qualify both girls for heart transplants. Their passing was not at all anticipated. A complication occurred and Emma's artery wall tore spontaneously without a recourse to repair the damage. Their "coming to this world in trailing clouds of glory, from God, who is our Home" was miraculous. Their return has been sorrowful and tender.

Please Join Us for the

Final Memorial Run for Two Sisters One Heart

Additional registration and information can be found at http://www.twosistersoneheart.com/

2010-08-13T10:49:00.000-07:00

Viewing and Funeral details are as follows:

Viewing
Friday August 20th, 6-8 pm
The Church of Jesus Christ of Latter-Day Saints
1521 E Bella Vista Road
Queen Creek, AZ 85242

Viewing & Funeral Services
Saturday August 21st, 1:00 pm viewing
Services begin at 2:00 pm
The Church of Jesus Christ of Latter-Day Saints
1521 E Bella Vista Road
Queen Creek, AZ 85242

Followed by a Private Family/Friends Graveside Service at Mariposa Gardens in Mesa, AZ
400 South Power Road, Mesa, AZ 85206

PLEASE NOTE:
The funeral service will be transmitted via CCTV to the following chapels:

The Church of Jesus Christ of Latter-Day Saints
33794 N Gary Rd
Queen Creek, AZ 85242

*Address Correction
The Church of Jesus Christ of Latter-Day Saints
29419 S Desert Willow Blvd
Queen Creek, AZ 85143 (San Tan Valley)

Many have asked, "What can we do?" Prayers certainly have and will help us through this journey. Also, if any may be interested, there is a link on this blog (right side) to make donations for the girls to help with these final arrangements and medical expenses. (It references Wells Fargo but that had been set up in the Phoenix area and may not be accessible.) These funds had been established to help with expenses of the girls' care - we certainly had not anticipated that the need might change - for final services.

2010-08-11T17:46:00.000-07:00

September 20, 2006 - August 10, 2010

Emma & Taylor Bailey have returned to our Father in Heaven yesterday, August 10th, 2010. They passed after complications encountered during surgery. The Bailey family has always appreciated the thoughts and prayers offered on behalf of their beautiful twin girls and we ask that they may continue for their family through these challenging times.

We have all been blessed to know Emma and Taylor. While their years were short on earth, their impact will last generations. We are humbled and honored to have felt the tender mercies of our Lord through the lives of these precious children. We invite you to reflect upon Elder Bednar's quote below and hope that it may provide some measure of comfort to you as it does for the Bailey family.

"We should not underestimate or overlook the power of the Lord’s tender mercies. The simpleness, the sweetness, and the constancy of the tender mercies of the Lord will do much to fortify and protect us in the troubled times in which we do now and will yet live. When words cannot provide the solace we need or express the joy we feel, when it is simply futile to attempt to explain that which is unexplainable, when logic and reason cannot yield adequate understanding about the injustices and inequities of life, when mortal experience and evaluation are insufficient to produce a desired outcome, and when it seems that perhaps we are so totally alone, truly we are blessed by the tender mercies of the Lord and made mighty even unto the power of deliverance (see 1 Ne. 1:20)."

Elder David A. Bednar
The Tender Mercies of the Lord

Why not?

2010-01-11T20:54:00.000-08:00

The girls had 2 scheduled surgeries in November....and managed to get the swine flu! Yep, you read correctly. The silver lining on this little rain cloud, is that the girls were heavily sedated during and recovering from surgery for the worst of the flu. The elusive H1N1 was detected a few days later. The 103 degree fevers and completely congested noses were pretty good tips! This was about 2 weeks into it and much, much happier.

This picture makes me happy! The girls love their "hats and gubs"! They needed some warm clothes for our cold AZ nights (don't laugh, it actually gets cold here), and they had fun getting themselves dressed!

AWESOME EVENTS!!!

2010-01-08T07:31:00.000-08:00

Mark your calendars, grab your running shoes (I prefer to walk!)and get ready for the 2nd annual Two Sisters One Heart Event! Last year was so great, that we're doing it again.... FEBRUARY 13, 2010 at Walker Butte Elementary in Johnson Ranch (San Tan Valley, AZ)--notice the city name change, still Queen Creek, new name. 3K, 5K & 10K Runs, Pancake Breakfast, Food Court, Festival Activities, Rock Wall, Bouncy Houses---lots of fun for the whole day!

We've booked some AMAZING ENTERTAINMENT AND ACTIVITIES for the event! Check www.twosistersoneheart.com to see all the fun!

Festival is from 8-5, run check-in at 7:00 am---see you there!

Register for the run at http://www.active.com/ and come for another great day!

AND....

Get ready to ROCK & ROLL at the Two Sisters One Heart Benefit Concert!!!

When: February 18th!
Time: 6:30-8:30
Where: Mesa High School Auditorium

Featuring: THE DUTTONS!!!! (http://www.theduttons.com/)

For tickets, contact Erika at 480-227-3173 or erika.crandall94@gmail.com or register online at http://www.2sisters1heart.blogspot.com/

2009-06-05T20:51:00.000-07:00

Emma & Taylor recovering after their surgery.

2009-06-04T19:23:00.000-07:00

Here's the latest update on Emma & Taylor who have just had surgery today. (FYI - this surgery was to place a band around Emma's aorta to help reduce her blood pressure.)

Just wanted to let you know how well all went today. They were in surgery about 1 ½ hours and they are now in intensive care. They are keeping them somewhat sedated with morphine, at least for now. The doctors seemed pleased and felt that it could not have gone any better. I think the girls will be in for maybe 2-4 days and then possibly a couple of days here and then they will head home – I think towards the end of next week. I don’t know for sure. I think everyone has felt that these little girls continue to be blessed with all the prayers that have gone out for them. It was pretty cute. This morning, they put purple tape on Emma (and her dolly) and pink tape on Taylor & dolly. When we got into the ICU room – they each had a nurse – Taylor’s nurse had wrapped the pink tape around her own head/wrist and Emma’s had done purple. They are being watched pretty closely with monitors and everything is being documented.
All in all, very good signs today –

Love, Grandma Joan

3K, 5K & 10K Fundraising Event

2008-12-15T07:51:00.000-08:00

On Valentines Day, February 14th, 2009, get ready to run for "Two Sisters-One Heart"! We are holding a fundraising event for Emma and Taylor--Valentines seemed the perfect day for it! The Non-Profit Organization, "Two Sisters-One Heart" is raising funds to kick off the continued health for the twins and ultimately, provide financial help to those parents of conjoined twins who do not survive.

This is going to be AWESOME! I have a small army of friends working on this....it's going to be BIG, with runs/walks, sponsored breakfast & lunch, vendors, activities---perfect for the whole family!

For Registration & Information or to sponsor, check out the site at:
http://www.twosisters-oneheart.blogspot.com/

2008-10-28T16:33:00.000-07:00

October 2008

Snohomish, Washington

Emma & Taylor at the Farm

2008-10-20T20:31:00.000-07:00

Here are some bits of information and thoughts to give you some understanding as to what's involved in making the decision whether to go forward with the separation of the girls:

*The hardest decision a parent would have to make is to have to make a decision. If there isn't a possibility of separation, there isn't a choice to make.

*An average child with congestive heart disease would live to late childhood, early teens. The shared heart these girls have is considered below average.

*One more test is needed which would measure the pressure in Emma's heart. If it's too high, then the possibility of separation would be taken off the table completely.

*They each have the anatomy to support a transplant heart. Artificial hearts work as an attachment to a heart--not an option.

*It's a small window in which to perform the separation. Too much longer, separation cannot be considered.

*With several preliminary surgeries, separation and recovery, the time frame would be 6-9 months minimum. How do we then manage family life, work, school for the big kids, etc.? Do we split up the family or not, in order to keep stability for work and the big kids?

*The doctors never said they should or should not separate. They said, "We can support you through this process. But the decision is up to you."

Hospital Consultations

2008-10-19T21:23:00.001-07:00

One of the most frequently asked questions would be for us is, "So, when are they going to be separated?" I suppose I would wonder the same thing if I ever saw conjoined twins. At the moment, there really isn't an answer to that question. We have been in Seattle, which also happens to be home for grandmas and grandpas, for the last 2 weeks completing very preliminary testing in exploring this possibility. With the information and discussions that we've been able to have with a team of surgeons there, we realize more fully the great miracle it is for our daughters to be alive and happy and the blessing it is for our family. In theory, we may have the potential for separation within a small window of time to do so, and we also have a better idea of an expected life span if they remain conjoined living with congestive heart disease that will, in time, become heart failure. A decision to have them remain conjoined needs to be weighed as equally heavy as considering separation, something we had not expected to deal with. But we do feel confident that for now, we should continue forward and consider very seriously and prayerfully our options and the choice that needs to be made.

2008-09-19T14:15:00.000-07:00

Guess who's TWO?

Happy Birthday Emma & Taylor!

September 20th!

Discovery Health Program:

"Two sisters, One Heart"

Oct. 22nd, 8 and 11pm

(Comcast channel #220)

Check listings at www.discoveryhealth.com for additional air times.

In October, the girls will begin the process of testing to determine the possibility of separation.

Discovery Health Documentary

2008-09-08T08:08:00.000-07:00

I realize I have miserably failed at keeping updates on the twins over the last six months! I take full responsibility, however, I did have a plan all along to redeem myself :) Since early spring, we have been working with Janice & Chuck from Discovery Health for a documentary on the twins. They have been awesome, and we truly feel blessed to have been in touch with them and share this part of our lives with them--we love you guys!!! And after all of their hard work, an airing of the documentary has been scheduled:

October 22 at 8pm and 11pm eastern time
Discovery Health Channel

I was hoping to book Kate Hudson for a stunt double, she wasn't abailable. Sorry guys, you get what you get, and you don't throw a fit! We hope you enjoy it, and get a few laughs and cries, as we have, putting it together.

2008-08-01T11:49:00.000-07:00

Grandpa Lybbert went for a visit and took this sweet video of the girls sitting up!

*As a side note, I'm not certain as to why part of the video was taken sideways but maybe he was just so happy to be there. :)

Our Last Edition

2008-06-14T09:47:00.000-07:00

Well, after an unexpected complication in March, I found myself confined to a lovely little hospital room for 5 weeks and had our baby boy 5 weeks early on April 21st, 2008. My mom came in for the rescue to manage house and home for nearly 6 weeks while I was hospitalized and a little bit of time after---thanks mom, you're the best! This little boy shares his birthday with Grandpa Bailey and Aunt Tara---kind of exciting! He was still a healthy 6 pounds and absolutely ADORABLE! I can't take any credit for the picture, I tweeked the "last edition" idea off a card I saw at the hospital's gift shop during one of my daily excursions! Thanks Breezy for the pics---they're gorgeous!

All of the kids are elated with their new brother, and it is heartwarming to see them help with him. It has been very interesting observing Paige with him in particular. She was 8 when the twins were born and wasn't able to hold and help with them as she wanted to. And now, she's a little mom and quite funny that she hasn't figured out that it's not normal to like changing his diaper when she gets home from school! Emma absolutely lights up when she gets to be close to Blake. Taylor is happy as well, and then starts pushing him away...as if saying "so when is this kid going to go back where he came from?!"

More exciting news....Char, my sister-in-law, had her baby on her due date of all things! If everything had gone as planned, our boys would have been about 10 days apart. This is her first baby and baby Colton was 8 pounds, 6 ounces. Here are both boys....Blake is wondering why Colton is so darn loud.

First Time Sitting!

2008-03-20T07:31:00.000-07:00

Well, almost to the day, it's taken 18 months, but Emma and Taylor sat by themselves today during physical therapy. They were so happy, and so were we! They adjust their legs as they are comfortable but mostly do a "V" sit with their legs and cross over each others to make a base. We put pillows around them so they could get resistance off their arms and hold themselves up. And as always, they got rewarded with their snacks for working so hard. Here are a few pictures:

Organization for Families with Conjoined Twins

2008-02-28T08:56:00.000-08:00

We are so excited to make some forward momentum on this organization! We have received some incredibly sweet phone calls and emails from families who have their own special experience with their conjoined twins. Although I felt I was prepared knowing the statistics and survival rates of conjoined twins, I've found that each family's experience is so tender and personal, that it has certainly given me cause to reflect on these families and their strength. Consequently, we will be investing some very focused time in getting this started and hope to be able to assist families soon. Thank you all for your encouragement!

Check out my Slide Show!

2008-02-25T20:43:00.001-08:00

Emma & Taylor Donations & Future Non-Profit Organization for Families with Conjoined Twins

2008-02-02T20:47:00.000-08:00

These past several years have been full of ups and downs that have created experiences for our family that we would have never expected. We never expected to have 6 miscarriages. We never expected having conjoined twins. We never expected our daughters to come home. And we never expected to go down a road that had hope for a separation. What we did expect though, was that whatever lay ahead for our family, that we would do our best to manage and keep this a positive experience for us and our children.

Why a Donation Fund for Emma & Taylor? Over the course of the past 17 months since our daughters birth, we have explored separation options and sent their file to several top ranked doctors around the world. The response was the same: What a miraculous situation that our daughters are alive-they shouldn't be, and to their regret, the only option to separate would be to sacrifice one for the other and with a heart transplant. At first, these were disappointing conversations to have, but certainly we will take our daughters as they are than risk one life for the other. And so we were content to enjoy them as they are, for what little time we may have. But over the past few months, we have learned of an artificial heart for toddlers that has been developed and successful in patients. We are to begin preliminary testing for separation in the coming weeks, and if things go well and we feel comfortable, we will proceed towards a separation for our daughters. Insurance will cover all the medical testing and surgeries, which will occur both in and out of state. From that point, the best location for preparation and surgery will be determined, and we will need to relocate for several months. The preliminary plan is to give each baby an artificial heart, allow time to recover and regain strength, then have their artificial hearts replaced with donor transplant hearts. Again, insurance will cover these medical expenses, but we are not in a position to manage travel, housing and time away from work over this broad span of time. That is the purpose for the donations.

Future Non-Profit Organization for Families with Conjoined Twins: My husband and I hesitated about seeking public funds for 2 main reaons: One, we were concerned about raising funds and not going forward with a separation if everything didn't feel right; and two, we were also concerned about the possibility of having excess funds. After much thought and conversation, we concluded we felt comfortable raising funds only if we committed ourselves to a non-profit organization to help other families with conjoined twins. Conjoined Twins occur in about 1 in every 100,000 births, approximately 40 per year in the United States. Of those 40, 25% make it to full term and birth. Of that 25%, or 10, 4 of these sets of twins will survive the first day of their lives. Now of those 4, some may survive a few days or weeks, some may even be able to come home from the hospital if they are able to ween off oxygen and feeding tubes. And maybe there will be one set that has long term survival and separation possibilities. We tend to only hear about that 1 or 2 sets of conjoined twins that were born and have been separated. And as wonderful as that is for those children and their families, there are far more families that have had to bury their children. We know how it felt for us in handling the very real possibility of losing 2 children at birth, which was a very heavy burden, we can only imagine the reality that this is for so many families. And although we cannot change a mother's challenge of empty arms that ache to hold her children, our goal is to create a way to lighten the financial burden of funeral and burial costs for these parents thru an organization for families with conjoined twins.

Donations for Emma & Taylor Bailey & Future Non-Profit Organization for Families with Conjoined Twins:

We've been having a few problems keeping these accounts secure and have for now, pulled and closed the accounts. We hope to have an alternative soon--

The First Days

2007-09-27T16:34:00.000-07:00

These pictures are particularly significant for us. A few months prior to their birth, my parents flew down from Seattle to help us make funeral arrangements. They had picked out these beautiful gowns for their burial, and my mom had finished these beautiful blankets for them. She hand ribbon crocheted the flowers and attached a little heart charm to each blanket.

Emma Joan and Taylor Nalani Bailey were born September 20, 2006. All of our children have a family name for their middle name, and we named the twins after their grandmothers. Tor's mother's middle name is Nalani and my mother's name is Joan, we felt impressed that they were to have these names. They were born C-Section, at 38 weeks. Our children, both sets of parents and a few of our siblings were able to be in town for their birth. They weighed 10.7 pounds combined, compared to their now 32 pounds combined. Emma was 17 1/2 inches tall, and Taylor was 18 1/2 inches tall. Having been prepared to lose them at birth, we were thrilled to have these first few momets and have our families meet these new babies. Tor gave them their first bottles and Paige, our oldest, gave them their first bath.

These pictures were taken 5 days after the babies were born. Most of them were taken from a wonderful photographer from a group called Now I Lay Me Down to Sleep. My dad had made arrangements for a photographer to document what little time we anticipated with our daughters. This group specializes in documented moments thru photography for families with stillborn and high risk infancy births, so that families can have pictures of the few moments with their child if they are unable to have memories. This was a very tender photo session and are grateful to our photographer and to dad for making it possible.

There have been several incidents with the girls that you just can't help but giggle. Like when the DMV employee gave us 2 handicap parking tabs "in case the babies weren't in the same car at the same time", or when I was asked if they sleep in the same bed, or when I get appointment notices with Emma scheduled to see the Dr. at 9, followed by Taylor at 10. This little video was taken the first couple of weeks. Tor was up with them so I could get some sleep. Taylor was sound asleep and Emma was having a hard time settling down...