3K, 5K & 10K Fundraising Event

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/

October 2008

Snohomish, Washington

Emma & Taylor at the Farm

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

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.

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

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.

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

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!

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

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!

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

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--