Christmas Cards

The Christmas cards have finally been sent out, I'm really behind this year. Usually, I have them done the last weekend of November but I didn't have a picture of Lily. I thought I would wait until a Christmas party our realtor here in Denver put on, which included a visit from Santa and his reindeer.

The entire way to the party Lily was "all talk" about how she was going to ask what to leave the reindeer to eat on Christmas Eve. Well, she clammed up and Ryan had to drag her up to receive her gift from Santa. Later, she had enough nerve to ask Mrs. Claus what to feed the reindeer. Mrs. Claus didn't do so well playing her part and said she wasn't really sure.

Well, as you will see from your Christmas cards we did not include a letter or Top 5 this year. Seriously what am I going to say . . .

1. My daughter died.

2. My dog died.

3. My grandfather died.

4. I can't wait to find out how 2009 treats us!

That's real uplifting for everyone!

I've decided not to post my rollarcoaster of a pregnancy as it's not much better. Although, I will let you know that we do not know the gender of the baby. We didn't find out with Lily and decided not to again, but I have decided to name the baby "Hershey's Kiss". It seems fitting since I'm eating an incredible amount of chocolate, 4 candy bars in the past 2 days. I thought they would be a better investment of my time then having to unwrap all those Hershey's Kisses. Even if we wanted to know the gender we wouldn't have been able to tell as the baby had it's legs crossed. Although, lately I've been having monthly ultrasounds and I know the gals in my OB office know the gender. I'm hoping the ultrasounds will continue as the baby was in the breech position, I know we still have lots of time for the baby to turn but I really like being able to see the baby on the screen.

Remembering JL & JL

It has been one year since our dear friends Justin and Jill lost their twins. Today, I remember a little boy and girl that grew their wings too early. I wish Justin and Jill peace and comfort today and everyday.

Through my healing process, Jill has sent me little messages when I needed them most. Here's one she sent me.

Your strength, courage and faith will get you through this day.
Because of your strength and courage,

the light within will shine through during this dark time.

~Elizabeth Kubler-Ross

The twins are apart of our daily prayers, not a day goes by that we don't think about and remember them. Please say a little prayer today for JL & JL, our angels above.

Thanksgiving

We were planning a trip to Durango, CO (about a 6 hour drive from Denver) for the Thanksgiving weekend to ride the Polar Express Train (based on the book), but a snow storm changed our plans. We were going to leave on Thursday and return on Saturday, but after hearing 14-16 inches of snow over a mountain pass and chains required we decided to head out to Ryan's parents house.

We had a great time seeing family and hanging out with our niece and nephew, although I kept thinking Jillian should be here with us, she would be almost 4 months old and a flood of questions came to my mind, would she be sleeping through the night? What's her temperament? How does Lily like being a big sister?

Lily played her first game of football, which was tackle (basically Lily just jumped on everyone) and hilarious to watch. She was also the entertainment at the table, making sure everyone clapped at her singing.

I've been busy in a quilting class, I unknowingly choose difficult fabric to work with that has caused many headaches and shoulder pain (I couldn't even move my arm - one of these days I'm going to get that shoulder replacement). But my quilt is looking good, Thursday is my last class.

We are heading to Phoenix for a quick trip this weekend to celebrate Christmas and see my grandparents that have traveled from Tampa.

I hope you all had a great Thanksgiving. Gobble! Gobble!

Grace Addison - Always Remembered

Yesterday was my friend Jen's daughter's 2 year Angel day. I was honored to be apart of her balloon release out at the Angel statue along with a few other close friends. It was beautiful, Grace will always be remembered and loved.

I met Jen through the loss of Jillian and at a MISS group. It was strange we just kind of gravitated towards each other and really hit it off, our lives are so parallel. Here are our similarities:

1. Both of our names are Jennifer Nicole
2. We hated Denver when we moved here, she actually went back to TX
3. Both are quilters
4. Last name is Haynes and Mayes
5. Husbands names Ryan and Brian
6. She received the call to adopt Carson on Jillian's due date, just the news I needed that day!

I really wish this was not the way I met Jen or the rest of the girls, but we have all created a beautiful bond. All of the girls have been so supportive over the past 8 months, I don't know where I would be without them. Please say a prayer today in memory of Grace and to help Jen and Brian through this difficult time.

OBAMA MANIA!

I'm so excited to have been apart of history by going to the DNC, watching Barack speak and casting my vote for change. I watched McCain's speech last night and thought he did an amazing job, but then fell asleep before Barack's speech. Ryan asked if he should turn the lights off and I thought there was no way I would fall asleep. Oops!

Lily has even surprised us by saying "That's Barack" when she sees him on TV, that's my girl! Ryan was caught off guard by her comment, I just sat and smiled. Whether your candidate won or not, it was an incredible year in politics!

Happy Halloween!

Here's our "Proud as a Lily"! She was so funny at the zoo, she tried to get the real peacocks to play with her. But, they just ran away from her! This past week we were able to wear the peacock to gymnastics class, after a few jump on the trampoline we took off the costume.
She also won "Best Costume" for our community Halloween party. At the party, some of the model homes were opened up for the kids to trick-or-treat at, Lily thought it was the neatest thing . . . people giving her candy for no reason! After the first house, she tried to open the door at the next house she just couldn't wait for the CANDY! Sounds like her mom! Lily seriously thinks a peacock says "trick-or-treat", it's pretty funny!

Today, we are heading off to Ryan's work and then onto our friend Kyle's house for a little get together tonight. What was your favorite costume as a child? I would have to say a "Princess" costume that my mom made, it was pink satin with a pretty hat and a star wand made out of aluminum foil.

T18 Story

I don't know if any of you watched Oprah yesterday but there was a story about a family with a child with T18. I had actually seen the video while I was pregnant with Jillian and thought it was a beautiful tribute to Eliot's life.

Here's the link in case you missed it, WARNING get the kleenex ready.

http://www.youtube.com/watch?v=th6Njr-qkq0

Facebook

Alright . . . I finally did it! I have an account with facebook, it seems like over the past few months I've been getting solicited from friends to join. Since I just joined I really don't know anything about it, I haven't had time to look at it. I'll keep you posted on how it goes or for those of you with an account, I just see little sentences that people leave. Is there more to their comment or is that it? I think blogging may be better for me, I guess we will see!

This past weekend we went to Boo at the Zoo! It was a total blast and Lily's costume was a huge success! Check back later this week to see our "Proud . . . "

Not Your Ordinary Grandma . . .

I know the first thing people think of is "grandma" when they hear quilting, but things have changed a lot in the quilting world since our grandma's days of quilting. I've finally downloaded the pictures off of the camera since February and I found a few of my pictures that I took of the quilts I made hanging in Harriet's quilt shop. I've signed up for a few more classes with Harriet that start in November. The women in my quilting class all know the story about Jillian and have been so supportive, we all started our classes together last fall and continued through winter and into the spring.

I'm so excited to get back into quilting, I haven't done any quilting since June, when we moved into the hotel. Now my sewing room, yes I'm so thrilled to have my own room dedicated just to quilting is finally unpacked and ready for me to get moving on the projects I still need to finish. It's amazing how therapeutic quilting has been for me, I can just be in my own little world and escape reality for a few moments.

I love talking to my aunt Joanie about our projects we are working on, especially right after the loss of Jillian. Those conversations we so helpful for me, more than she will ever know. My aunt Joanie is an amazing quilter, check out her website to see her beautiful work.

www.heirloomquiltingdesigns.com

She will be teaching in Phoenix in January, I'm hoping to make it down to Phoenix and also take a few classes. My mom, Joanie and I have been getting together for the past few years and always have a project to complete and of course, lots of shopping. It's such a fun time for all of us.

I made this quilt during my first quilting class, Harriet asked to hang it in the store to show customers how to use this line of fabric. I still own this quilt.

This is the first sample I made for the store, I made it right at the beginning of my pregnancy with Jillian and finished it right before the morning sickness hit.

This quilt has the cutest cherry fabric! I made this sample for the store in April and it was good for me to do at the time.

Democratic National Convention

First of all, yes I realize I'm super late in posting this but . . . better late than never. Plus, I just got the photos back (we brought a disposable camera). There was a group of 8 of us that attended the event all thanks to Ethnie (our hero)! Actually, everything started on Sunday evening, Ethnie was able to get tickets to a concert. It was an evening filled with speeches on living green, the concert performers included Sheryl Crow, Dave Matthews Band and Sugarland. This was also the evening that a funnel cloud was spotted in our neighborhood while Ryan and Lily continued to play outside. We all had a great time at Red Rocks, it was my first time to the amphitheater. What a beautiful place!

The big day arrived (August 28, 2008), Jill and I planned everything out to head down to Mile High Stadium, we rode the light rail and arrived at 12p to see an enormous line of people. It took us an hour to get into the stadium, since assigned seats were not given it was first come seating in your assigned section. Well, Jill and I hurried up to our section to find 3 other people sitting, that left about 200 or more seats to choose from. I'm pretty sure Jill tried out every seat in our section!

Then the waiting game began in extremely warm temperatures, Jill and I were dying in the heat. I'm not even sure how much water we drank that day, but I don't think I've ever drank so much. We waited out in the hot sun for the rest of the gang to show up around 5p, we did the impossible and were able to save a total of 8 seats. We were starved by the time everyone showed up so Jill and I got in line for food waiting about 45 minutes and we had 3 people in front of us when Al Gore got on stage. We decided to get out of line and watch him speak, we had been waiting all day to see him.

Jill and I left the house at 10:30a and didn't get home until 12a, it was an exhausting day especially with the heat. I wouldn't have missed it for the world! It was amazing to be apart of history and listen to Barack Obama speak. I'm so ready for CHANGE!

National Child Loss Day

Today is National Child Loss Day, President Reagan signed it during his time in office. My mom and step dad drove up on Thursday and spent the weekend with us. Or as Lily said "New Grandma and Grandpa". We attended the Walk to Remember on Saturday, along with Ryan's parents. It meant so much to have our families here for the event.

I worked on getting the scarves done last week, 21 scarves were made for the event. I was a little worried about the scarves because it has been in the 70-80s lately, but a cold snap hit Denver and it was wet and cold the day of the walk. Our group of "Team Triple J" looked super smart having scarves on and it made it so easy to find each other in the crowd.

There was a silent auction at the event, my mom was kind enough to bid on a wall hanging quilt and won it for me after beating out another serious bidder. I just love it, I'm going to hang it in my sewing room. Notice the balloons and doves, as they are released at the walk. The money earned goes to buy bereavement baskets to be given to area hospitals, each basket costs $40, see below if you would like to donate a basket in Jillian's honor.

The balloon release was beautiful, here are some pictures. Ryan, Lily, Larry and Carol left prior to the balloon release, Lily was so cold and I didn't want her to get sick. Her poor nose was so red! Unfortunately, they were unable to release the doves due to the weather. Apparently they can't find their way home if the skies are not clear.



Later we all went back over to Jill's house for a little indoor BBQ, oh my goodness the food was so amazing!

You've probably noticed my "new" look to my blog, I've added blogs that I read and my favorite charities are listed. It's getting towards the end of the year and if you are looking for a place to donate, I've listed the organizations that have been so helpful to our family. You can check out each charity, the Walk to Remember will be offering the baskets soon on their website. Keep checking if you would like to donate a basket!

Thanks again for all of your support this year. It's so wonderful to know we are surrounded by such wonderful family and friends!

Tahoe . . . T-Bone . . . Towhee

Well, today we had to say goodbye to Tahoe after almost 10 years. Over the past week, he just looked so sick, the vet thought it was too much medications. But, after an ultrasound today, we found that he was hemorrhaging internally from his spleen which was most likely due to cancer that had spread to his liver.

We just got home from Costco, no I didn't buy a cake, now that I think about it maybe I should have. Anyways, it was sad to come inside and not have Tahoe here to greet me at the door. I feel bad that the last few months of his life were so rough on him, with living in the hotel and me losing my patience with him more often lately. Now, I realize it was probably because the cancer had spread to his brain and he just wasn't thinking clearly. Ryan and I were joking last week that I thought he was suffering from doggie alzheimers.

Even with all his seizures and trying to get them controlled over the years, he really was a good dog. He was so good with Lily from the first day we brought her home from the hospital. She's asked where he is and we told her he went to go play with Jillian up in the stars. While we were driving home from Costco she said, "Towhee is an angel now". I'm just so surprised on how much she really understands.

Love you SB . . . eat a big steak and go play with Jillian.

I can not wait for 2008 to be over with . . . what else can go wrong???

I Survived Today

I've been dreading today for the past month, it's Jillian's due date. I've almost survived the day, only 2 hours left. After a good cry in the shower this morning, we all piled into the car to head down to the statue and leave Gerber daisies at Jillian's memorial. Lily knew that we were planning on going to the zoo today, so when we arrive at the statue Lily says "Let's go to the zoo!" about 30 seconds after we arrived, nothing like a 2 year old to brighten the mood.

We then head on our way to the Cheyenne Mountain Zoo in Colorado Springs, about an hour from our house. We decided to go to the zoo because the day we found out Jillian's diagnosis we went to the zoo that afternoon. Although, we had never been to the Cheyenne Mountain Zoo. It's an amazing zoo built into the side of a mountain, not your typical zoo. You walk in and immediately are greeted by 19 giraffes ready for you to feed them a cracker. Lily was a little frightened on how large they were, but really wanted mom and dad to feed them. We were also able to pet a baby wallaby, Lily actually touched the baby and commented on how soft it was. The great thing about this zoo was how close you really got to get to the animals.

I had lunch at one of my favorite restaurants from Wisconsin, Culver's. They are famous for their Butter Burgers and custard. I've never seen a Culver's in Colorado, we may have to go to the zoo more often.

When we arrived home I was pleasantly surprised with a bouquet of Gerber daisies and a necklace from Jill. She's been such a wonderful person for me to lean on, such a blessing in my life.

Later that day, I received a call that my friend Jen and her husband Brian were heading to Nevada to pick up their son. Jen and Brian have been waiting to adopt a baby and were blessed today with the news. As Jill said, Jillian wanted me to have some joy today. I believe that is true! I then scrambled to get a few things together for Jen to take with her, Baby Bjorn, car seat, stroller and a infant travel bed.

I couldn't have asked for a better way to end today! Congrats to Jen and Brian, keep them in your prayers as they drive to Nevada tonight and for a save return home. I can't wait to meet Carson!

Just Under 2 Months!

Wow, things have been so crazy with the move! Sorry, I've been so terrible about returning emails, don't take it personally. Well we have officially moved out of the hotel and into our "new home with a slide" according to Lily. After our tiny hotel life for 6 weeks, I feel like I'm living in a mansion, there is so much space I don't know what to do with myself!

Our neighborhood seems great so far, we don't have any neighbors on our street but lots of great people nearby. With our HOA I have 2 hours of childcare 5 days a week for FREE!!! What's not to love! I haven't used it yet, but the day is coming very soon.

The photo on the postcard of Lily by herself won the "Grand Prize" Champion ribbon at the Philips County Fair. We went out to Ryan's parents for the 4th of July and had a local lady take the family's photo. She did an amazing job and is now our "official" new photographer!

With Jillian's due date approaching on September 3, I've been trying to decide what to do/where to go for the weekend. I just want to get away and relax, maybe a day at the spa!

Jill and I are planning our way to remember the twins and Jillian for a walk held in October. "Team Triple J" members are going to be wearing something very special. I've been working with my Aunt Joanie on ideas for a logo and stitched out my first sample yesterday! Still needs a little work but I think it will look awesome when it is done. If you want more info on the walk you can check out the website: http://www.walktoremember.org/

Let me know if you are planning on joining "Team Triple J" so we can have your special "goodie" ready for the walk.

I'm also getting ready to start sewing roman shades and other window treatments! Hopefully, I can get back to quilting soon! My sewing room is the last room in the house to be unpacked, the end in site is very close! Hopefully, it won't be another 2 months before I blog again!

Butterfly Release

As many of you know, this past Saturday we attended a Butterfly Release out at the statue. It was a spectacular morning here in Colorado, as the entire event was. We all received a Monarch Butterfly to release after all the names of the children were read by Corinne, the founder of Rowan Tree Foundation. It was beautiful to watch all the butterflies on their new journey in life, kind of like what I've been going through these past few months. An incredibly difficult journey that I still do not know why I was chosen to go on.

My friend Jill brought two red roses for her twins and a gerber daisy for Jillian, she passed the flowers out to her entire family and mine as well. It was so touching, as we both always leave a flowers at the statue when we visit.

To end the celebration, we all headed over the the Pinery Country Club and enjoyed a wonderful brunch. It was nice to sit out on the patio and chat with family and friends, and every now and again catch a glimpse of a Monarch butterfly fluttering by.

We Are Staying!!!

Hip Hip Hooray!!! The Phx buyers accepted our offer as we knew they would, they were just fishing to get more money out of us! $%#@ Anyways, we are thrilled to be staying here in Denver. Hopefully the drama is finally over! 16 days until we close on the Phx house.

I'm especially happy because I'm able to stay close to the Angel Statue. In 2 weeks there will be a Butterfly Release out at the statue and the walls will be completed with Jillian's memorial tile. If anyone is interested in joining us, please go to http://www.rowantreefoundation.org/ to RSVP by June 14th. We would love to have friends and family with us on this very special day.

Oh . . . I forgot to mention I was able to get tickets to Madonna's concert! I'm super excited! As my friend Jill said in her blog "I will be eating ramen noodles for the next few months to pay for the ticket"! Oh, it will be so worth it!

More Drama

OK . . . today while we were having our inspection on the house in Colorado, our realtor called to tell us that there was problems on the Phoenix house. The Phx realtor didn't like our repairs, for example they said the microwave was leaking radiation, we had Kitchen Aid come out to look at it and they said there was nothing wrong with it. We also had an electrician look at the main electrical panel as the circuit was blowing when all the lights were on in the kitchen, living and dining room (for the life of me why would you want to burn your retinas) and he said the problem was that the wrong wattage of light bulbs were installed causing the problems. This was completely unacceptable to the buyer as they want a new microwave and a new electrical panel installed even though there is absolutely nothing wrong with anything. So we have sent a counter stating we will give you XXXX dollars to repair everything yourself as nothing we can do will be right. If they do not accept the offer, we are going to be moving back to Phoenix after all. Sorry, I'm venting over the stupidity of it all! I'll keep everyone posted on the Haynes Drama!

Lost Friends

Well, I've finally met up with my 4 long lost bestfriends. It's been about 6 years since I've seen Carrie, Charlotte, Miranda and Samantha. Yes, all of you Sex in the City fans I saw the movie last night. I won't spill any of the details of the movie, but I will say I really enjoyed the movie. I went with a group of great gals (Jill, Corrine & Jen) and we shared some pretty hilarious stories after the show on how our lives have been similar to theirs. One funny note, Jen has never seen an episode of SITC and told us she would catch-up and watch the shows the day before. Those of us that have watched know that she's looking at a good week in bed to see all the episodes.

Have any of you seen any good movies lately?

Crazy, Crazy, Crazy

It's been awhile since I have blogged, things have been super crazy. I'm not sure when our lives are going to be back to normal. Every time we turn around there seems to be another snag. Well here goes . . .

First, we had planned to move back to Phoenix at the end of the summer. Our landlord decided to change that as we received a 30 day eviction notice on May 1st. So, with that our decision to move back was changed to June 1st. After getting all the movers set up, mail changed and all the other stuff that goes along with moving, we received an offer on our house in Phoenix on May 19. Of course we accepted the horrible offer, as we really want to stay here in Denver.

Now, we have to find a place to live in Denver?!? We asked our landlord if we could possibly stay one more month in the rental and he declined (he's trying to sell the house). With that, we had less than 2 weeks to pack the house and find a place to live. I'm currently in my spacious 2 bedroom, 400 square foot hotel room with a dog that is freaking out and Lily saying "Our new house!". Needless to say, we can't leave Tahoe by himself or he will just bark and we will probably get another eviction notice. So, I'm planning on being stuck in this hotel room with Lily and Tahoe for the next 5 weeks.

We did hear today, that the offer we placed on a house yesterday was accepted but they are not able to close until July 8th (we were hoping for June 25) as they are waiting for a house to be completed. We purchased a house in a community called Southshore, it is very family oriented with babysitting offered 2 nights a month for "Parents Night Out". Free babysitting . . . sign me up! It also won "Community of the Year" for the entire USA, it's a pretty new community so we will have to see how things end up. There are only two houses on the cul-de-sac, the other house is a spec that hasn't sold.

With Lily's 2nd Birthday right around the corner, I think we will have to postpone her party until we are settled. Then we will plan on Costco cake!

A Special Friend

We've been starting to enjoy the spring weather here in Denver, last week we had a little snow and this week we are in the 60s and 70s. I'm definitely ready for spring to come, I look forward to the Farmer's Market and hiking around Colorado. I really want to see more areas of Colorado this summer, we didn't do very much hiking last year. Lately, we have been going to the zoo on the weekends with Lily.

Everyday continues to be a challenge, Friday's are the worst, as that was the day we lost Jillian. I'm starting to sleep better, so I guess that is some progress. Ryan no longer allows me to bring the computer into the bedroom, which really has helped me sleep. Although, my body continues to think I'm pregnant as I'm still eating all the time, that really sucks.

Losing a child really makes you stop and think about your life. I've been evaluating my life and relationships since all this began, trying to decide what's best for me and my family. I definitely have changed, I no longer look at things in the same way. My priorities are different, I really don't care about the little things anymore, I'm just blessed to have a healthy family and friends.

My best friend Jill has blogged about Jillian on a few occasions (3.18 & 4.17), she has been a wonderful friend during all of this. I guess it is because I can tell her what I'm feeling and she understands completely, she's able to tell me in advance that months 3-6 are the hardest to get through. I'm blessed to have a friend like her in my life and name Jillian after her. Keep her & Justin in your prayers, this past Sunday was the twins due date. Please check out her blog -

http://wyostarbucks.blogspot.com/

A big thank you to all of you that have donated to Rowan Tree Foundation, it is an amazing and wonderful charity!

I've Lost It!

Well, many of you are really going to think I've gone off the deep end after reading this. As you know, I belong to a wonderful grief support group. All the people in the group are just amazing, I'm just sad this is the way we all had to meet. Anyways, one of the gals mentioned she saw a terrific psychic. Of course Ryan is not thrilled by the idea, he thinks its all a big hoax. I figured why not give it a shot, could things really get any worst?!?

This all happened a couple weeks ago. The psychic lives in NY and the reading was done over the phone, she uses tarot cards and doesn't want to know anything about you prior to the reading. She begins, I hear the cards being shuffled and start writing down everything she is telling me. At the end I'm able to ask specific questions. So here goes . . .

This is what she said about me, I'm very intuitive, I need to trust my gut instincts and don't get too far ahead of myself, stay in the moment. She sees pictures all around me, she asks if I'm a photographer and I say no. Also, sees lots of books and classes around me. As for my future, she sees me working with children in about 4 years, I will need some sort of special certification which will require me to take classes. Lastly, taking a trip at the end of May.

My interpretation: I don't trust my gut instincts like I should and I do get way to far ahead of myself. I look at the pictures taken of me while pregnant with Jillian all the time. I've been looking at many quilting books to get different ideas on how I want my tribute quilt for Jillian to look and I've also been taking lots of quilting classes. No idea what my future holds. We have unused tickets to Florida, maybe we will take a trip - nothing is planned right now.

This is what she said about Ryan, she spent a lot of time on him. She sees moving boxes around him and his feet are in different locations. He's not rooted where he is right now and she sees an out of state move. For his personality she said, he thinks things through in his head before telling anyone, he really does listen but doesn't always acknowledge it and he doesn't like to be told what to do. Ryan's employer will want him to finish something up here in Denver, before we head back to Phoenix in June. Next year at this time Ryan will be big on moving, she sees a transfer in 9-12 months as part of a promotion at his current job. Does he have a second job?

My Interpretation: She's right about the moving boxes and our feet in both Denver and Phoenix, the basement is filled with unpacked moving boxes. She is dead on about his personality, I'm always bugging him to pay attention to me when I'm talking. Ryan says he'd never get anything done if he listened to me all day. Ryan's boss just came in last Friday and asked if we are still planning on going back to Phoenix in June, Ryan said yes but we may delay it until the end of summer. His boss told him to wait on going to Phoenix as something is in the works right now (my guess is they may give us a housing stipend to stay in Denver - although, I'm not psychic). As for the promotion, my guess is that he takes over his boss's position. Yes, he has a second job at Target - I still can't live without the discount.

Lily's reading also was long, she said Lily was super intuitive, very observant, quite the handful, strong-willed and independent. She is more of a leader, very head strong, very smart, wants everything explained to her but needs to learn from experience. Lily's going to want to try out many things (ie sports) but will not follow through. We can anticipate problems during the teenage years.

My Interpretation: I agree completely on her analysis of Lily's personality, but she kept asking me if she was "really smart". I only have a few people to compare her to and she is much more verbal than the others. Of course any parent wants to hear that their child is smart, I guess we will see when she heads to school. Aren't all kids problematic during the teenage years?

Jillian's reading was interesting, she told me Jillian had problems with her heart and breathing. Jillian's purpose was to provide future learning for others, there was something specific they learned from her. Jillian is with my maternal grandmother's sister right now. The psychic keeps seeing the name Mary around me.

My Interpretation: At our last appt, Jillian's heart rate was declining, indicating problems with her heart which is common in T18 babies. As for her purpose, I can only think of how her initial FISH results came back abnormal (2 1/2 dots vs 3) the doctor had only seen this one other time in his long career, maybe it will help out with future cases. I thought Jillian was with my paternal grandmother Mary, which did not make me feel good, she was never the motherly type of person. After speaking with my mom, she said "Jillian's with Aunt Mary" whom is grandma's sister. I've never met Aunt Mary but, I do know her daughter and she is a wonderful person. I've also found out that Aunt Mary "purpose" was to be a mother and was adored by my grandparents. It brings me such peace knowing she is with a wonderful family member.

So that was pretty much my reading, it was more about the people around me than specifically me. Yet, I'm blessed my life revolves around Ryan, Lily and Jillian. No mention of Tahoe, strange?

I was pretty upset by the comments about going back to Phoenix, although a friend whom has used this psych for years told me "I feel like having a reading is a buying a tool you now have to face the future with a little more ammunition toward achieving your goals. I think that when you have a reading, it is the universe’s way of giving you the opportunity to change something you do not want, and be proactive – you’ve now got more of a lead in heading off these changes… perhaps you can alter what might have come to pass now that you are not heading blindly into your future."

Have any of you had a psychic reading? I'd love to hear about it!

Denver vs Phoenix

Well, it has been 2 weeks since we lost Jillian, it seems like it was just yesterday. I'm hoping to just wake up and find out it was all just a terrible nightmare.

Ryan and I discussed staying here in Denver and purchasing a home until we sell our house in Phoenix (our rental has gone on the market, it's a pain dealing with showings). I went out with the realtor last week while Ryan was at work and Lily was at the babysitter. We didn't see too much, I got home early and had a lot of time to just think. I didn't realize how much of a distraction Lily was during the day, all I could think about was Jillian.

Ryan and I were able to go out yesterday with the realtor, we are finding we need to increase our budget. At this point, we are going to wait and see if the house in Phoenix sells this summer. If not, we will be back in Phoenix in the fall.

A year ago I would have jumped at the chance to move back to Phoenix, but things have changed. First of all, I'm not the same person I was 2 months ago, losing a child changes you forever. I can't imagine leaving Denver, we have most importantly the Angel Statue to visit. We visit the statue and leave flowers every week, it is similar to going to a grave site but there are no graves. It's a statue with walls being built that will hold tiles with the name of children that have past away, Jillian will have a memorial tile placed next to the twins tile. The thought of moving and not being able to go to the statue makes me sick to my stomach.

Tonight, I'm going to a Bon Jovi concert. We bought these tickets back in October, we saw Bon Jovi this past summer at Cheyenne Frontier days and had a blast. So when we saw they were coming to Denver we all jumped on the opportunity. Don't worry, I'm getting my leather pants out and teasing my hair to the sky.

Jillian Ellen Haynes

On Friday, March 14, 2008, our precious daughter Jillian received her Angel wings.

I guess at this point I'm just blessed to have had the opportunity to see her one last time on Wednesday and know she is no longer in any pain. Ryan has been a wonderful shoulder for me to cry on.

We received our photos back, Julie did an amazing job. I love to watch it, crying every time, thinking of how I will never able to hold Jillian and tell her how much I loved her. I'm hoping the funeral home will be able to get her footprints, I just want to be able to hold onto something she touched.

Here's the link to our photos, you need to download the software in order to watch them. The software is not compatible with Mac users.

http://www.photodex.com/sharing/viewshow.html?fl=2953532&alb=0

I was sent this poem by a very special person, I'm hanging on to these thoughts right now that Jillian will be taken care of.

My Precious Little Baby,

Your face I've never seen.

Your skin I've never touched before,

Nor held you close to me.

You lived inside my body,

But only for a while;

Till Jesus softly whispered,"Come home my little
child."

You must have been a special child;

If God needed you up there.

Because heaven is a better home,

It's beauty can't compare.

So, till I get to heaven,

And see your shining face;

Jesus will take care of you,

And love you in my place.

Yes, Jesus loves His little lambs,

They sit around His throne;

So sit on Jesus' lap dear child--

Till Mommy gets called home.

~ Author Unknown

Jillian will forever be in our hearts!

Preparing to Say Goodbye

We met with our Perinatologist Dr. Wheeler today, she and her staff have been just wonderful to us, they are so compassionate and understanding. Dr. Wheeler informed us that Jillian looks worse than she did a few weeks ago, she is accumulating a lot of fluid beneath her skin indicating a poor prognosis along with the fact she is measuring 2 weeks behind where she should be. Dr. Wheeler has told us it is unlikely that Jillian will survive to 20 weeks, she's just too sick. I was able to tell how weak Jillian has gotten since our last appointment, she barely moved during the ultrasound. After lots of tears, we were able to meet with a hospital Chaplin, she provided a beautiful blessing for Jillian.

It's so hard to think of saying goodbye to your child, it seems like just the other day we were being told we were expecting our second child. All our hopes and dreams for Jillian have disappeared, I do find comfort in knowing she will be with JL & JL. We thought the 3 of them would grow up together (they were to be about 6 months apart), I guess they will but just in heaven.

I'm so glad we had our pictures taken yesterday, as our days with Jillian are limited. Our photographer Julie was great, Lily just loved her and her 3 cats. As soon as we get the pictures back I will post some of them. Afterwards, Lily and I went out to the Angel Statue, a memorial for families of lost children. It's so peaceful out there.

Just when I didn't think the black cloud over us could get any darker, the rental house we have been living in went on the market today. We are hopefully going to have an answer on our house in Phoenix this week, the couple interested in our house is debating between a house in Ahwatukee and ours.

Continue to keep Jillian in your prayers!

Final Results

We received the final results on Jillian today, the tests confirm she has "full" T18. Again, if we had to get this diagnosis this is type of T18 desired as it is not hereditary just a fluke of nature. Our chances of having another child with T18 are extremely low, my OB said 1 out of a million. Since we have to go the invitro route to conceive, genetic testing for T18 is available but risky to the embryos. But, we will go down that road in the future.

So, Wednesday we will have the detail ultrasound with the Perinatologist, at our last appointment things didn't look good as far as the cranium/brain and internal organs/digestive tract. They are hoping since Jillian should be bigger that they will be able to see things clearer and give us a better idea of her specific condition. T18 babies also tend to have major heart problems (3 chambers vs 4) and a lot of the time this is why 60% the babies do not survive to birth. Although, we were told a good visual of the heart on ultrasound is not seen until 18-20 weeks.

My days just seem to go by in a blur, Lily at least keeps my mind off things during the day but the early mornings and evenings are tough.

Baby's Name

I've decided to change the baby's name after waking up on Friday, all of the sudden Jillian Ellen popped into my head. The meaning of the name Jillian is in honor of my best friend Jill, she has been a tremendous support for me during this time, along with "Ann" being Ryan's mom's middle name as well as his grandmother. The middle name is in honor of my mom & grandmother, both who share the middle name Ellen.

This week we are expecting the final results for the genetic testing on Jillian, as well as an appointment with the specialist for another detailed ultrasound and follow-up with our OB. I was able to schedule a photographer with the "Now I Lay me Down to Sleep" organization (info in last posting), so that will be done on Tuesday.

Last Thursday I had the last of my triangles quilting class, we completed a "Feathered Star", I must say I'm quite impressed with myself. In order for the quilt to turn out, every piece must be exact, like how a puzzle fits together. I left my camera in Phoenix, so when I get that back I will post a photo. I'm planning on using the same pattern to construct small quilts for the Children's Hospital, they will all be donated to families that have lost a child.

We were all sitting at the dinner table the other night and Lily has decided she is now on a first name basis with us. I'm "Mama Jenny" and just "Ryan" for her Dad. She's becoming such a parrot to everything we say. Finally, she's starting to eat fruits and veggies, I was concerned for the longest time that I, being a dietitian had the child with the eating disorder. She only wanted to eat yogurt, hot dogs and bologna (the last two she picked up at the babysitters house). She also negotiates the number of cookies she gets after her meals - I must say it is really funny. Dad and Lily just finished up gymnastics yesterday, unfortunately the next session was filled so we may try swimming lessons again. Our last try at swimming lessons lasted a whole 5 minutes, she screamed the entire time.

I will continue to keep you all posted on Baby Jillian.

Is it a message?

We heard back from our genetic counselor today, again we were told the baby's results were not completed as the placental cells are taking a long time to grow out (hopefully by Monday). Ryan's karyotyping came back as "chromosomally normal", as was expected. The geneticist did look at 2 of the placental cells and saw T18, a total of 20 cells minimum need to be looked at for confirmation. But, with the 2 cells showing T18, it looks more like the baby has "full" trisomy 18. This would be the form of T18 we would hope for, as it is the random form vs hereditary. The chances of having another child with T18 is very low (2-3%).

As I've known in my heart, we are expecting a little girl. I've selected a name and have been using it when I talk to the baby, I still need to OK the name with Ryan before I post it. The initials are LVH, reminds me of "love her always".

Yesterday started out as any normal day here except Lily slept in and therefore threw our schedule off a little bit. We have music class on Wednesdays, so I knew we would need to hurry a little, but it snowed yesterday morning and after speaking with Ryan (roads slippery) we decided to stay home. I typically watch the Today show to catch up on current events and find out the weather for the day, maybe an hour's worth. The TV was on longer than normal and I happen to catch a story about a family that lost their little girl (they don't say, but I believe she had T18) and how a group of photographers are helping out. Memories are the only thing left after the baby is gone, I just feel this was a message sent to me saying have a family picture taken soon in case something happens, I'm planning on scheduling tomorrow.

Here are the links to the Today Show in case you want to watch it and the website for "Now I lay me Down to Sleep".

http://www.msnbc.msn.com/id/21134540/vp/23481435#23481435

http://www.nowilaymedowntosleep.org/start.php

Last night I attended a grief counseling group, I really think it helps knowing I'm not alone out there right now in how I'm feeling. This group meets once a month, since it was short notice, we didn't have a sitter for Lily and Ryan wasn't able to make it.

Lastly, so I don't end on a sad note, our realtor called and is expecting an offer on our house this weekend. He's the other party's realtor and feels confident that these are our buyers, the wife comes into Phoenix this weekend for a second look at the house. Strange how we buried St. Joesph less than a month ago and this is happening, although we did get a call from our landlord this week and he wants to put the rental house we are in on the market in the next few weeks. I hope when I was praying to St. Joesph he didn't get the 2 houses mixed up, I guess I need to clarify my prayer to sell the Phoenix house!

Still Waiting . . .

We heard back from our Genetic Counselor, my karyotyping (genetic testing on blood) was "chromosomally normal". I was shocked by the results and I'm so thankful at the same time for future pregnancies. Ryan's results have not been completed yet, but his family history is unremarkable. So we are not expecting to see anything come out of his.

With all that said, the counselor spoke with the lab MD about our FISH results (2 and a half dots vs the normal 3). The MD has only seen results like this one other time in his career (of course, Ryan and I would fall into the "unusual" category), the result was a spontaneous translocation.

A quick description of a translocation is, when 2 chromosomes split and switch positions. Many people have translocations (this is what they were thinking I had) but the total number of chromosomes still totals 46 and the person is "normal", but their arrangement of chromosomes is not normal. Our baby has ended up with 47 chromosomes, the extra chromosome at the 18th position.

We probably will not hear anything until Wednesday, when the baby and Ryan's results will be back. Again, the counselor forgot to find out the baby's gender. So, I'm not able to share that with all of you at this time.

Today is going to be near record high temperatures in Denver (70 degrees). We are heading to gymnastics this morning and off to the zoo later today. Tomorrow we are expecting snow, so we really want to take advantage of the gorgeous weather today.

FISH Test Results

First of all, we would like to thank everyone for their kind words. It's a wonderful feeling to know we have such loving, caring and supportive family and friends.

We received the preliminary test results for T13, 18 & 21, they are "unclear" at this time. But, they do show an abnormality with T18 - instead of 3 dots they see 2 1/2 dots. Based on this, they believe the baby does not have "full" Trisomy 18 (non-hereditary type and 95% of T18 patients), but things seem to be leaning towards a "partial" Trisomy 18 (hereditary type and more rare form). Although, the outcome does not change for the baby based on "full or partial" T18. With "partial", our chances for another child with the same condition are high.

The genetic counselor has placed a rush on Ryan and my genetic karyotyping, the results will be back tomorrow instead of 2 weeks. They are hoping our karyotyping will give them the pieces they need to make a diagnosis. My guess is that, I'm a carrier and since "partial" T18 is rare, this is why the dots look "unclear" to the lab. With our information, the genecists will also be able to give us an idea of our chances for having a healthy child in the future.

The full report on the baby's chromosomes will not be back until next week, the placental cells need to grow before the testing can be done. The lab forgot to send the baby's gender to our genetic counselor so tomorrow we will find that out as well as what maybe going on. No matter what they find, the prognosis is poor when a problem is found on chromosome 18.

Why me?

Last night I was laying in bed after posting the blog and thought, I guess I never really explained what I'm feeling now. Let's start off by saying"Why me?", I feel that I'm a pretty nice person, I don't go out of my way to hurt or cause problems for anyone, tell the cashier when she's rung something up wrong - I really believe in karma so I try and always do the right thing. So why do bad things happen to good people?

Again, the worst day of my life was last Friday. I have a wonderful OB, she was very gentle and honest with us when breaking the news. For me, the Trisomy 18 Foundation has been a wonderful site to share my feelings with others faced with the same condition. One lady posted her OB told her over the phone and said "your child is incompatible with life". Wow, words can be very damaging. This is why I'm not up for phone calls at this time, I can barely deal with what is going on, let alone discuss it on the phone.

I still can't figure out "Why has this baby survived and overcome everything stacked against her (I have felt the baby is a girl from the moment I found out we were expecting - tomorrow's results will tell us the baby's gender). The heart beat has been great, I really think she's so strong and an amazing fighter - more than I ever will be. But, the ultrasounds tell a different story of how sick she really is, I guess my biggest fear right now is that she will suffer. I just pray God will give her her wings early if she will suffer in anyway. I just have this terrible suspicion that I'm a carrier and I've caused all this pain for our precious baby. Maybe I'm being sent a message telling me, "have your genetics tested so you will be able to have another healthy baby someday". I just wish I had listened to my inner voice earlier and had insisted on the genetic testing. With IVF (invitro) they are able to do genetic testing on the embryos prior to transferring into the mother. We have 2 frozen, which can still be tested if we decide to go down that road again.

Coping, unless you have been faced with the loss of a child, you really do not know what someone is feeling. December was a very difficult month, with the emotions of IVF and most of all my best friend was devastated by the loss of her twins, she has been amazing support for me. She truly understands the feelings I'm experiencing right now, looking back I just wish I could have been more support for her. It's the simple things that matter during a situation like this, like the emails she sends daily just to tell me she thinking of me, respecting our privacy and most of all providing love and support.

Ryan also has been wonderful during all of this, he watched Lily all weekend so I could either cry or research T18 before our visit with the specialist. I thought it was strange when he told me he thought I was doing an amazing job with Lily (I was thinking the same of him), despite what was going on. I told him, this maybe the only child we have and I don't want to mess things up with her. He's really been my rock to lean on, he's an incredible husband and father. I love him dearly.

As I said before, Lily is even more of a blessing and we are just amazed at how perfect she really is. She is very chatty, she has just started saying "I love you" which breaks my heart at the same time because I will never hear this baby say those words and Lily will never know her younger brother or sister. She continues to love going to music class and gymnastics. We went to the zoo last Friday afternoon, just to get out of the house and see the beautiful smile Lily gets on her face from the animals. I find myself being so much more patient with her and giving her about a million hugs and kisses a day.

Many of you know that I've been taking quilting classes, my Aunt Joanie is an extremely talented quilter and designer. She is helping me design a quilt that I will have as a tribute to our baby that will hang in my bedroom. This is something that will keep me busy and hopefully my mind off of things.

So I don't end on a sad note, the odds of having a child with Trisomy 18 is 1 in 3000 live births but I've seen it as high as 1:10,000. Ryan said "Why haven't I ever hit those odds in Vegas?" Maybe our luck will change and the house in Phoenix will sell, we need some sort of good news in our lives.

How I'm Feeling

I decided to start blogging again to get out what I'm feeling and let everyone know what we are going through, for some strange reason it feels better to write about what's happening. I'm not up to talking about it on the phone, I'd just end up crying in your ear. I've not gotten much sleep over the past few days so I hope this makes sense.

Here's how our life has been for the past few days, Friday started out great, we were excited to see the baby again on the ultrasound. I remember last month when we filled out paperwork, this was an optional ultrasound and "may not be covered by insurance and cost the patient $300" we giggled about this and said "what's another $300 after invitro". Of course, we thought the baby looked perfect, last month it looked like a little blob on the screen but this time we saw the 2 arms and legs. I remember saying "wow, look how much the baby has grown in a month, no wonder I'm hungry all the time". Our OB was running behind and I knew Ryan had a lot of work to do before we left for Florida, so I said go ahead and go back to work. He was unsure but I assured him things were fine, the ultrasound looked perfect.

The first time I knew things were not good was when the nurse brought me back to the room without taking my weight (the test we were in for requires weight, blood and ultrasound done that day), I'll never forget her saying "the doctor wants to see you first", this is when I started to panic and called Ryan back to the office. The doctor explained the ultrasound revealed abnormalities with the cranium and a high nuchal translucency (this measurement detects chromosome defects) - she was 99% sure the baby had Trisomy 18 (T18). I asked how often she sees this condition, she said she's only seen this 3 or 4 times in her career. I requested a second opinion and left the office in tears. Then continued to cry and did as much research as I could this past weekend.

This feels like the cruelest joke being played on us, first having the fertility MD tell us our chances for getting pregnant were not good due to the quality of our embryos (he had a hunch at the time that something genetic was going on due to our high loss of embryos, we started with 31 and ended with 4) so when I found out we were pregnant it seemed like a miracle. And now, I think how in the world did this baby survive? Most T18 babies or babies with chromosome issues miscarry early and you never know why - I guess there is a reason for this. With my sister having a non-diagnosed developmental disorder and a another distant aunt with the same - the geneticists were baffled why I was never tested. I've always discussed this with the MDs but everyone thought it was a gene mutation and nothing hereditary. Now, I'm pissed that a simple blood test would tell if I'm a carrier. Although, it is rare that I would be a carrier of T18 - but it makes sense to me right now.

Today, we went to see the Perinatologist whom is also a geneticist. She was just wonderful to us, we had another ultrasound. They have the best ultrasound on the market so they really can see quite a bit, I was amazed at how clear things were. She didn't give us the news we wanted to hear, the baby has a halo of fluid around it, which is consistent with a chromosome defect. She performed a CVS (chorionic villa sampling), a sample of the placenta is taken and sent off for genetic testing. It's too early to do a amnio, which looks at the fetal cells specifically (actually, there is a difference in genetic material between the placenta and fetus). The results will be back in 2 days for the 3 most common chromosome defects (13, 18 and 21). A total of 9 chromosomes will be looked at but, those results will not be back for 10 days and 14 days for Ryan and my analysis. I also asked if they saw this condition often, we were told again it's a rare condition and they see only a few cases a year (anyone in CO would be sent to this office).

So you are probably wondering what is Trisomy 18? I was too, I remembered back to when I was pregnant with Lily and thought that would be a terrible diagnosis for a parent to receive. T-18 is the second most common chromosome disorder, right behind Trisomy 21 (Down's Syndrome). Trisomy means three, so trisomy 18 results in 3 chromosomes in the 18th position, a "normal" person has 2 chromosomes at each of the 26 positions. T-18 is a multi-organ disorder, affecting the brain, heart, kidneys, GI tract and esophagus for starters. Most babies do not survive to birth, the babies that do typically live only a few hours to days. 10% of the babies born will live to one year.

I've found so much support at the Trisomy 18 Foundation website. You might want to check it out to better understand the condition: trisomy18.org

Ryan and I just look at Lily and think it's a miracle that she is so perfect. Please continue to respect our privacy during this difficult time. I'll keep you all posted on what's happening here. The best thing you can do for us during this time is to keep us in your prayers.