I know it's been awhile since my last post. This time the brief hiatus was due to hosting and entertaining many family visitors in the past week and a half. The primary reason for so many visitors (8 in total) around the same time was because everyone wanted to spend time with Josh before he deployed. While having so many people temporarily 'living' with us (9 including us plus our dog at one time in our 3 bedroom house) was a bit overwhelming at times, spending time with family and having family come to us was a real treat! Some of the highlights included having our deck built, Josh's grandma helping me learn to use my new sewing machine, giving our visitors tours of the area, and home cooked meals.
Last week, after most of our visitors had left and while my mom was in the middle of her stay, I received a text message from my husband with the final answer that we had been waiting to hear for the past 3 months. You see, since my husband received orders back in December-ish for Fort Campbell, where my husband was going and when has remained up in the air. At first he wasn't going to be deploying, then he was, then he wasn't, then he was. Last I knew and reported on the blog, he was deploying. Then we learned there was only 1 slot available and 2 people available and planning on filling it, Josh being one of them. Therefore, this meant waiting to hear back about which one of them was going to be chosen for the slot to deploy. While waiting, Josh remained on pre-deployment training. When we were almost 2 weeks from him possibly leaving for a year, I finally got the news...
Josh will not be deploying anymore. Instead, he will be switching units and is likely to deploy Fall 2012 (but we all know how that can change!).
I cannot begin to describe how relieved I was to have an answer regarding our future. Most people think I was relieved because my husband isn't deploying so soon anymore, but really, I was most relieved just to know something. Mentally and emotionally I had prepared myself and was in the mindset that my husband was going to be deploying for a year and leaving this month. We had thought maybe a quicker deployment would be best for his career and our family, and so we were good with that decision and ready for it, but God had other plans, and we are good with the plans he has for us.... I just wish it hadn't involved so much uncertainty, waiting, and patience.
So my husband and I will remain together for now until the Army decides to call him away from home for real next time. I'm thankful to have him by my side as we start our journey together at Fort Campbell.
Monday, April 4, 2011
Thursday, March 24, 2011
The Loneliest Walk
Christa recently left me a comment on one of my blog posts in which she shared the lyrics of a song called "The Loneliest Walk" by David Osmond. I had never heard of this song before and poured over the lyrics. The words of this song are like I could have written them. I just kept reading and saying, "That was me. That was what we did." What a perfect song for me, and for so many others who have walked the loneliest walk, so I knew I had to share this song with you. The best part is the last part of the song... the reminder that "someone's walked this road before."
She pushes L on that old elevator door
Her heart is broken, arms are bare
The doors are closing and she’s staring at the floor
There’s still a piece of her up there
It seems like yesterday she saw her on the screen
Painted a room and picked out names
But now she has to leave her under big machines
To keep alive her tiny frame
She’s on the way to her car, but its never felt this far
With each step she takes there’s another to follow
And one more ache, one more tear to swallow
She’s gotta keep moving
Forget about the bruising inside
Through the loneliest walk of her life
He pushes up the board they’ve tied onto his shoulders
He bears, with dignity, disgrace
He hears the jeering and the wind is getting colder
Tastes the blood upon his face
His body bruised and back still open from the scourges
The consequence of wicked men
He knows no man on earth has ever deserved this
But still he bears it all for them
And He keeps moving up the hill to do his fathers will
Withe each step he takes theres another to follow
and one more ache, one more tear to swallow
we all stand by and watch as the price is paid
Through the loneliest walks of his life
so we don’t feel alone in the night
we can have his hand holding the light
through the lowliest walks of our lives
Keep pushing through this lonely walk youre going through
Cause someones walked this way before
If you'd like to listen to the song you can find it here.
This is what me and so many other NICU moms experience. It's stressful, it's heartbreaking, it's isolating.
Sometimes my own words don't express the importance of having something like Hailey's Hope and Project Sweet Peas... but maybe this song will move you to do something to help and bring a source of comfort to a family in need.
Just yesterday I received an email from the NICU we recently donated to asking for suggestions on how to best hand out our bags when there were so few (30) donated and they have so many (over 70) beds... The need is great, please help us meet the need.
To donate to Hailey's Hope please use our PayPal button or email me: Kristin@ProjectSweetPeas.com
She pushes L on that old elevator door
Her heart is broken, arms are bare
The doors are closing and she’s staring at the floor
There’s still a piece of her up there
It seems like yesterday she saw her on the screen
Painted a room and picked out names
But now she has to leave her under big machines
To keep alive her tiny frame
She’s on the way to her car, but its never felt this far
With each step she takes there’s another to follow
And one more ache, one more tear to swallow
She’s gotta keep moving
Forget about the bruising inside
Through the loneliest walk of her life
He pushes up the board they’ve tied onto his shoulders
He bears, with dignity, disgrace
He hears the jeering and the wind is getting colder
Tastes the blood upon his face
His body bruised and back still open from the scourges
The consequence of wicked men
He knows no man on earth has ever deserved this
But still he bears it all for them
And He keeps moving up the hill to do his fathers will
Withe each step he takes theres another to follow
and one more ache, one more tear to swallow
we all stand by and watch as the price is paid
Through the loneliest walks of his life
so we don’t feel alone in the night
we can have his hand holding the light
through the lowliest walks of our lives
Keep pushing through this lonely walk youre going through
Cause someones walked this way before
If you'd like to listen to the song you can find it here.
This is what me and so many other NICU moms experience. It's stressful, it's heartbreaking, it's isolating.
Sometimes my own words don't express the importance of having something like Hailey's Hope and Project Sweet Peas... but maybe this song will move you to do something to help and bring a source of comfort to a family in need.
Just yesterday I received an email from the NICU we recently donated to asking for suggestions on how to best hand out our bags when there were so few (30) donated and they have so many (over 70) beds... The need is great, please help us meet the need.
To donate to Hailey's Hope please use our PayPal button or email me: Kristin@ProjectSweetPeas.com
Monday, March 21, 2011
Hailey's Hope Happenings
Our 1st Delivery of 2011 & 1st Delivery to Vanderbilt
On Thursday, March 17th, my husband and I made our way to Nashville, TN to deliver the first round of care packages from Hailey's Hope to the NICU at Monroe Carell Jr. Children's Hospital at Vanderbilt. We made the donation in honor of Friday, March 18th being Trisomy 18 Awareness Day, which of course is what our Hailey had. I was so thankful to have had enough resources in our inventory and bank account leftover from fundraising for our December delivery to The Children's Hospital of Alabama in memory of Hailey's first birthday to be able to deliver 30 basic NICU care packages (15 boy, 15 girl) a little over a month after moving to Tennessee!
Connecting with and receiving permission from employees of Vanderbilt was a complete blessing. After about a month, I finally was able to get into contact with the right people, and they have been more than wonderful to work with. They have shown a genuine interest in what our project offers their NICU as well as a sincere appreciation for what our project, and Project Sweets Peas as a whole, does for families. On Thursday, my husband and I arrived with the 30 NICU bags packed in our car and were greeted by the people we had come into contact with from volunteer services. We even were able to see a little bit of the Children's Hospital, which is a marvelous place, and were able to chat with the director of volunteer services about Hailey and our project.
The entire experience was a huge blessing to us, and I'm hoping our delivery will be a blessing in the lives of the families in their NICU. I only wish we could have donated more than 30 bags because their NICU has over 70 beds, and their hospital cares for families from across the state. As my dreams and vision for Hailey's Hope grow larger, I only hope that our support and donations grow larger as well so that they can all be accomplished.
I can never say it enough, but THANK YOU to everyone who has donated to Hailey's Hope and made our project successful. I love being project leader of this cause in memory of my daughter; it means the world to me.
If you'd like to continue to support us, I'd like to tell you briefly about a few ways you can do that this month. First, let me start by saying that after this recent delivery to Vanderbilt, our bank account is low and our inventory is near zero in every category; therefore, Hailey's Hope really needs your help to raise up our funds and inventory again so that we can continue to help families who have babies in NICUs.
Here are 3 ways you can get involved and help:
1. You can visit our Hailey's Hope page and donate to us online by clicking on our PayPal button - donating financially is secure and easy!
2. There are still a few weeks left in our Flowers of Hope fundraiser. You can visit our Hailey's Hope campaign page and order flower bulbs to plant in your garden this spring, and we will receive 50% of all sales! Our fundraising goal is $500, and we are currently at $299, so we still have to sell a lot of flowers before we meet that goal! By participating in this fundraiser your money goes to buying you beautiful flowers AND supporting our project as well!
3. Project Sweet Peas is holding an Adopt a NICU Mom Campaign from now until April 30th. By participating in this fundraiser, you can buy a beautiful bracelet for a special mom in your life for this Mother's Day. When you do, Project Sweet Peas matches your purchase and donates an identical bracelet to a mom with a baby in the NICU. Mother's Day can be quite the challenge for a NICU mom, this would be a great way to bring a little cheer to her day. To get involved with the Adopt a NICU Mom Campaign, visit www.projectsweetpeas.com. There you can read about the campaign, see a picture of the bracelet, and purchase it online. Bracelets are only $25.00 each! When ordering, please specify that you would like HAILEY'S HOPE to receive the bracelet that we will donate because of your purchase. Pass this on and help us lift the spirits of these beautiful and wonderful Mothers!
On Thursday, March 17th, my husband and I made our way to Nashville, TN to deliver the first round of care packages from Hailey's Hope to the NICU at Monroe Carell Jr. Children's Hospital at Vanderbilt. We made the donation in honor of Friday, March 18th being Trisomy 18 Awareness Day, which of course is what our Hailey had. I was so thankful to have had enough resources in our inventory and bank account leftover from fundraising for our December delivery to The Children's Hospital of Alabama in memory of Hailey's first birthday to be able to deliver 30 basic NICU care packages (15 boy, 15 girl) a little over a month after moving to Tennessee!
Connecting with and receiving permission from employees of Vanderbilt was a complete blessing. After about a month, I finally was able to get into contact with the right people, and they have been more than wonderful to work with. They have shown a genuine interest in what our project offers their NICU as well as a sincere appreciation for what our project, and Project Sweets Peas as a whole, does for families. On Thursday, my husband and I arrived with the 30 NICU bags packed in our car and were greeted by the people we had come into contact with from volunteer services. We even were able to see a little bit of the Children's Hospital, which is a marvelous place, and were able to chat with the director of volunteer services about Hailey and our project.
The entire experience was a huge blessing to us, and I'm hoping our delivery will be a blessing in the lives of the families in their NICU. I only wish we could have donated more than 30 bags because their NICU has over 70 beds, and their hospital cares for families from across the state. As my dreams and vision for Hailey's Hope grow larger, I only hope that our support and donations grow larger as well so that they can all be accomplished.
I can never say it enough, but THANK YOU to everyone who has donated to Hailey's Hope and made our project successful. I love being project leader of this cause in memory of my daughter; it means the world to me.
If you'd like to continue to support us, I'd like to tell you briefly about a few ways you can do that this month. First, let me start by saying that after this recent delivery to Vanderbilt, our bank account is low and our inventory is near zero in every category; therefore, Hailey's Hope really needs your help to raise up our funds and inventory again so that we can continue to help families who have babies in NICUs.
Here are 3 ways you can get involved and help:
1. You can visit our Hailey's Hope page and donate to us online by clicking on our PayPal button - donating financially is secure and easy!
2. There are still a few weeks left in our Flowers of Hope fundraiser. You can visit our Hailey's Hope campaign page and order flower bulbs to plant in your garden this spring, and we will receive 50% of all sales! Our fundraising goal is $500, and we are currently at $299, so we still have to sell a lot of flowers before we meet that goal! By participating in this fundraiser your money goes to buying you beautiful flowers AND supporting our project as well!
3. Project Sweet Peas is holding an Adopt a NICU Mom Campaign from now until April 30th. By participating in this fundraiser, you can buy a beautiful bracelet for a special mom in your life for this Mother's Day. When you do, Project Sweet Peas matches your purchase and donates an identical bracelet to a mom with a baby in the NICU. Mother's Day can be quite the challenge for a NICU mom, this would be a great way to bring a little cheer to her day. To get involved with the Adopt a NICU Mom Campaign, visit www.projectsweetpeas.com. There you can read about the campaign, see a picture of the bracelet, and purchase it online. Bracelets are only $25.00 each! When ordering, please specify that you would like HAILEY'S HOPE to receive the bracelet that we will donate because of your purchase. Pass this on and help us lift the spirits of these beautiful and wonderful Mothers!
Please find a way to get involved and support our project!
Friday, March 18, 2011
Trisomy 18 Awareness Day
Today is Trisomy 18 Awareness Day. Trisomy 18 changed my life. I'd like to tell you a little bit about it.
It's my goal, in having a daughter who had Trisomy 18, to raise awareness, not to find a cure, but to educate others about what it is, what we went through/ what families go through, and to encourage you to support those dealing with Trisomy 18.
Trisomy 18 is known as Edward’s Syndrome; it is the second most common form of Trisomy after Trisomy 21, the most famous of Trisomies which is Down's Syndrome. Trisomy 18 is a lethal genetic disorder, meaning it is not compatible with life; it is fatal. Trisomy 18 is three times more common in girls than boys. Trisomy 18 occurs in about 1 out of every 3,000 babies or even 1 out of every 6,000 (depending on your source). 50% of babies with Trisomy 18 that make it to term will be stillborn. Less than 10% of babies born with Trisomy 18 make it to their first birthday.
Trisomy can come in the form of full, partial, or mosaic.
Full Trisomy means the 3rd copy of the chromosome occurs in every single cell of the body. This type of Trisomy is not inherited and is the most common. It is completely 'spontaenous.' This is the kind Hailey had.
Partial Trisomy means there is only a part of the 3rd copy of the chromosome present in the cells of the body. This form tends to be very rare and could be hereditary.
Mosaic Trisomy means the 3rd copy of the chromosome occurs in some cells in the body. This form is also very rare and is not inherited.
Trisomy babies often have many abnormalities, many of which are not compatible with life like those found in Trisomy 18. No two babies with a Trisomy are identical – not every baby faces the same abnormalities as another. Some may have a large number of abnormalities while others only a few.
Trisomies can be diagnosed prenatally and vary case by case. There is no cure.
My Experience with Trisomy 18
My prenatal screening to detect whether Hailey had a Trisomy was incorrect. The screening was consisted of two parts, one which was positive, the other which was negative; together these indicated Hailey was a healthy baby. Hailey had no other abnormalities that were detected via ultrasound. A few days after Hailey was born, she was diagnosed with full Trisomy 18 through the use of a FISH test. Hailey lived to be 1 month and 5 days old. Unlike many babies with Trisomy 18, she was able to get out of the NICU and come home with us.
Typically, parents who are older than 35 and those who have other risk factors are more likely to conceive a baby with Trisomy 18; however, this is not always the case, as was our case. We were young, healthy, and our pregnancy with Hailey had a zero risk factor. Anyone can have a baby with Trisomy 18.
Hailey was much more like a "normal" baby than others with Trisomy 18, which is possibly why it took so long for her to be diagnosed. She did not have any of the most common 'symptoms' such as a cleft palate or experience any serious problems with her internal organs. Here are most of the affects of Trisomy 18 on Hailey (that we were aware of): Hailey’s left hand and wrist did not develop correctly, but she could use it. She had long fingers, usually clenched fists, small facial features, low set ears, a skin tag on her face, webbing on her neck and a few other parts of her body, part of her intestines on the outside of her body (gastroschisis), and apnea.
To learn more about our experience with Hailey and her Trisomy 18 please read my other posts – you probably want to try any of the posts categorized as “Trisomy 18″ first.
Here are some links you might consider reading or sharing:
Trisomy 18 Wikipedia
99 Balloons
Trisomy 18 Foundation
Trisomy 18 Hope
Most importantly, please know that Hailey, and other Trisomy 18 babies, deserve as much a chance at life as any other baby and are just as wonderful. However, because the difficulty lies in the stresses associated with their care and their deaths, families who have babies with Trisomy 18 need lots of encouragement, love, and support. If you know someone expecting a baby diagnosed with Trisomy 18, the best way you can help them is to research Trisomy 18 and be there to support them.
It's my goal, in having a daughter who had Trisomy 18, to raise awareness, not to find a cure, but to educate others about what it is, what we went through/ what families go through, and to encourage you to support those dealing with Trisomy 18.
Trisomy 18 is known as Edward’s Syndrome; it is the second most common form of Trisomy after Trisomy 21, the most famous of Trisomies which is Down's Syndrome. Trisomy 18 is a lethal genetic disorder, meaning it is not compatible with life; it is fatal. Trisomy 18 is three times more common in girls than boys. Trisomy 18 occurs in about 1 out of every 3,000 babies or even 1 out of every 6,000 (depending on your source). 50% of babies with Trisomy 18 that make it to term will be stillborn. Less than 10% of babies born with Trisomy 18 make it to their first birthday.
Trisomy can come in the form of full, partial, or mosaic.
Full Trisomy means the 3rd copy of the chromosome occurs in every single cell of the body. This type of Trisomy is not inherited and is the most common. It is completely 'spontaenous.' This is the kind Hailey had.
Partial Trisomy means there is only a part of the 3rd copy of the chromosome present in the cells of the body. This form tends to be very rare and could be hereditary.
Mosaic Trisomy means the 3rd copy of the chromosome occurs in some cells in the body. This form is also very rare and is not inherited.
Trisomy babies often have many abnormalities, many of which are not compatible with life like those found in Trisomy 18. No two babies with a Trisomy are identical – not every baby faces the same abnormalities as another. Some may have a large number of abnormalities while others only a few.
Trisomies can be diagnosed prenatally and vary case by case. There is no cure.
My Experience with Trisomy 18
My prenatal screening to detect whether Hailey had a Trisomy was incorrect. The screening was consisted of two parts, one which was positive, the other which was negative; together these indicated Hailey was a healthy baby. Hailey had no other abnormalities that were detected via ultrasound. A few days after Hailey was born, she was diagnosed with full Trisomy 18 through the use of a FISH test. Hailey lived to be 1 month and 5 days old. Unlike many babies with Trisomy 18, she was able to get out of the NICU and come home with us.
Typically, parents who are older than 35 and those who have other risk factors are more likely to conceive a baby with Trisomy 18; however, this is not always the case, as was our case. We were young, healthy, and our pregnancy with Hailey had a zero risk factor. Anyone can have a baby with Trisomy 18.
Hailey was much more like a "normal" baby than others with Trisomy 18, which is possibly why it took so long for her to be diagnosed. She did not have any of the most common 'symptoms' such as a cleft palate or experience any serious problems with her internal organs. Here are most of the affects of Trisomy 18 on Hailey (that we were aware of): Hailey’s left hand and wrist did not develop correctly, but she could use it. She had long fingers, usually clenched fists, small facial features, low set ears, a skin tag on her face, webbing on her neck and a few other parts of her body, part of her intestines on the outside of her body (gastroschisis), and apnea.
To learn more about our experience with Hailey and her Trisomy 18 please read my other posts – you probably want to try any of the posts categorized as “Trisomy 18″ first.
Here are some links you might consider reading or sharing:
Trisomy 18 Wikipedia
99 Balloons
Trisomy 18 Foundation
Trisomy 18 Hope
Most importantly, please know that Hailey, and other Trisomy 18 babies, deserve as much a chance at life as any other baby and are just as wonderful. However, because the difficulty lies in the stresses associated with their care and their deaths, families who have babies with Trisomy 18 need lots of encouragement, love, and support. If you know someone expecting a baby diagnosed with Trisomy 18, the best way you can help them is to research Trisomy 18 and be there to support them.
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