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--

The First Days

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...