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.
Monday, March 31, 2008
Sunday, March 16, 2008
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.
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!
Wednesday, March 12, 2008
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!
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!
Monday, March 10, 2008
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.
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.
Sunday, March 09, 2008
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.
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.
Thursday, March 06, 2008
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!
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!
Saturday, March 01, 2008
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.
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.
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