(From Grandma's Facebook Page)
Grandma Posted:
Changing my profile in memory of 2 CDH Cherubs lost so far this week. Baby Bryson was born preemie & grew his wings on Sunday & baby Phoenix was lost on Monday after a hard fight against CDH.
Please keep both their families in your prayers. Fly High Little Ones!!!
Jayden Scott Gilbert's CDH Journey and his Family's Support of CDH International in His Memory
Thursday, May 12, 2011
Sunday, May 8, 2011
May 8, 2011 - Happy Mother's Day!
(From Grandma's Facebook Page)
May 8, 2011
Happy Mother's Day to my Mom (who put up with me all these years!) and my daughters L. & Alicia.
Thank you Mom for all you did, I could only hope to be a good 2nd to you.
L., you and I may have our issues, but I am still VERY proud of the mom that you are to B. & K.
Alicia, I am SO proud of the mommy you've been to Jayden. I know he is looking down on you proudly!
I Love You All!!! ♥♥♥
May 8, 2011
Happy Mother's Day to my Mom (who put up with me all these years!) and my daughters L. & Alicia.
Thank you Mom for all you did, I could only hope to be a good 2nd to you.
L., you and I may have our issues, but I am still VERY proud of the mom that you are to B. & K.
Alicia, I am SO proud of the mommy you've been to Jayden. I know he is looking down on you proudly!
I Love You All!!! ♥♥♥
Thursday, May 5, 2011
Saturday, April 30, 2011
April 30, 2011 - Cherubs Lost in April 2011
Please pray for the families of all these Cherubs lost in April... :'(
♥ Maddox ♥ Straton ♥ Lucy ♥ Sofia ♥
♥ Maddox ♥ Straton ♥ Lucy ♥ Sofia ♥
Friday, April 29, 2011
April 29, 2011 - We need to win this and HELP our babes...
(From Mommy's Facebook Page)
We need to win this and HELP our babes and finally tell the world we will NOT lose 1 more baby to this EVIL!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
CHERUBS with the Vivint Gives Back Project | Vivint
www.voteforcdh.org
Wednesday, April 27, 2011
April 27, 2011 - A Friend Posted this for Mommy & Grandma...
Little Angels
When God calls little children
to dwell with Him above.
We mortals sometimes question
the wisdom of His love.
For no heartache compares with
the death of one small child,
who does so much to make our world
seem wonderful and mild.
Perhaps God tires of calling
the aged to His fold.
So He picks a rosebud
before it can grow old.
God knows how much we need them
and so He takes but few,
to make the land of Heaven
more beautiful to view.
Believing this is difficult
still somehow me must try.
The saddest word mankind know
will always be "Goodbye".
So when a child departs
we who are left behind,
must realize God loves children,
Angels are hard to find.
~Author Unknown
When God calls little children
to dwell with Him above.
We mortals sometimes question
the wisdom of His love.
For no heartache compares with
the death of one small child,
who does so much to make our world
seem wonderful and mild.
Perhaps God tires of calling
the aged to His fold.
So He picks a rosebud
before it can grow old.
God knows how much we need them
and so He takes but few,
to make the land of Heaven
more beautiful to view.
Believing this is difficult
still somehow me must try.
The saddest word mankind know
will always be "Goodbye".
So when a child departs
we who are left behind,
must realize God loves children,
Angels are hard to find.
~Author Unknown
Monday, April 25, 2011
April 25, 2011 - This is why research is needed!!
(From Grandma's Facebook Page)
This is why research is needed!!
If we can PREVENT CDH or help expand prenatal treatments like gel tracheal occlusion or other treatments we haven't even thought of yet we can save so many more babies & save families, insurance companies & taxpayers money!
Saving lives & money? Now that would be a Win-Win!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
This is why research is needed!!
If we can PREVENT CDH or help expand prenatal treatments like gel tracheal occlusion or other treatments we haven't even thought of yet we can save so many more babies & save families, insurance companies & taxpayers money!
Saving lives & money? Now that would be a Win-Win!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Costs of congenital diaphragmatic hernia repair in the United States-extracorporeal membrane oxygenation foots the bill.
Raval MV, Wang X, Reynolds M, Fischer AC.
Source
Division of Research and Optimal Patient Care,
American College of Surgeons,
Chicago, IL 60611, USA.
m-raval@md.northwestern.edu
J Pediatr Surg. 2011 Apr;46(4):617-24.
doi: 10.1016/j.jpedsurg.2010.09.047.
Abstract
BACKGROUND:
Congenital diaphragmatic hernia (CDH) is the costliest noncardiac congenital defect.
Extracorporeal membrane oxygenation (ECMO) is a treatment strategy offered to those babies with CDH who would not otherwise survive on conventional therapy.
The primary objective of our study was to identify the leading source of expenditures in CDH care.
METHODS:
All patients surviving CDH repair were identified in the Kids' Inpatient Database (KID) from 1997 to 2006, with costs converted to 2006 US dollars.
Patients were categorized into groups based on severity of disease for comparison including CDH repair only, prolonged ventilator dependence, and ECMO use.
Factors associated with greater expenditures in CDH management were analyzed using a regression model.
RESULTS:
Eight hundred thirty-nine patients from 213 hospitals were studied.
Extracorporeal membrane oxygenation use decreased from 18.2% in 1997 to 11.4% in 2006 (P = .002).
Congenital diaphragmatic hernia survivors managed with ECMO cost more than 2.4 times as much as CDH survivors requiring only prolonged ventilation post-repair and 3.5 times as much as those with CDH repair only (both P < .001).
Age, multiplicity of diagnoses, patient transfer, inhaled nitric oxide use, prolonged ventilation, and ECMO use were all associated with higher costs.
Extracorporeal membrane oxygenation use was the single most important factor associated with higher costs, increasing expenditures 2.4-fold (95% confidence interval, 2.1-2.8).
Though the CDH repair with ECMO group constituted 12.2% of patients, this group has the highest median costs ($156,499.90 / patient) and constitutes 28.5% of national costs based on CDH survivors in the KID.
Annual national cost for CDH survivors is $158 million based on the KID, and projected burden for all CDH patients exceeds $250 million/year.
CONCLUSIONS:
Extracorporeal membrane oxygenation use is the largest contributing factor to the economic burden in CDH.
With limited health care resources, judicious resource utilization in CDH care merits further study.
Copyright © 2011 Elsevier Inc. All rights reserved.
PMID: 21496527 [PubMed - indexed for MEDLINE]
Wednesday, April 20, 2011
April 20, 2011 - Exciting news for raising CDH awareness week!!!
(From Grandma's Facebook Page)
Exciting news for raising CDH awareness week!!!!
A Cherub survivor (who also has a Cherub angel brother in Heaven with our Jayden) WON in a Ralph Lauren model contest!!!! GREAT JOB Celie!!!!
--- Announcing the RL Gang Grand Prize Winner! Congratulations to Celie, the newest member of the RL Gang. Thank you to everyone who entered and voted and a special thank you to the amazing finalists. ---
Exciting news for raising CDH awareness week!!!!
A Cherub survivor (who also has a Cherub angel brother in Heaven with our Jayden) WON in a Ralph Lauren model contest!!!! GREAT JOB Celie!!!!
--- Announcing the RL Gang Grand Prize Winner! Congratulations to Celie, the newest member of the RL Gang. Thank you to everyone who entered and voted and a special thank you to the amazing finalists. ---
Tuesday, April 19, 2011
April 18th & 19th, 2011 - Going to Visit Jayden...
(From Grandma's Facebook Page)
Alicia & I will be going up to visit Jayden & if the weather is good will do a balloon release for him & all our Cherubs. It will also be his 14 month birthday. Holding him & all the Cherubs close in our hearts as we hope to get the word out. I will try to get video to post.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Was able to do the balloon release but I had to go to work before I could up load the pictures. Will work on it tonight!
April 19, 2011 at 6:10pm
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Alicia & I will be going up to visit Jayden & if the weather is good will do a balloon release for him & all our Cherubs. It will also be his 14 month birthday. Holding him & all the Cherubs close in our hearts as we hope to get the word out. I will try to get video to post.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Was able to do the balloon release but I had to go to work before I could up load the pictures. Will work on it tonight!
April 19, 2011 at 6:10pm
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
For family & friends who didn't see it before, THIS is why we are so passionate about CDH!!!
If you are touched by his story, feel free to share!
http://www.youtube.com/watch?v=JWwo9a7xeyw
http://www.youtube.com/watch?v=JWwo9a7xeyw
Sunday, April 17, 2011
April 17, 2011 - Please sign the petition!
(From Grandma's Facebook Page)
Shelly shared a link.
CDH took the life of my precious grandson Jayden. No one knows what causes it meaning we don't know how to prevent it. Research is the key but it costs money. Every 10 minutes a baby is born with CDH & 50% them will die. It takes less than 2 minutes to sign this petition. Can you spare 2 minutes to help?
Shelly shared a link.
CDH took the life of my precious grandson Jayden. No one knows what causes it meaning we don't know how to prevent it. Research is the key but it costs money. Every 10 minutes a baby is born with CDH & 50% them will die. It takes less than 2 minutes to sign this petition. Can you spare 2 minutes to help?
Congenital Diaphragmatic Hernia Research Bill
apps.facebook.com
This bill was created by CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support to increase greatly needed funding for CDH.Congenital Diaphragmatic Hernia (CDH) is a devastating birth defect that occurs when the diaphragm fails...
Tuesday, April 5, 2011
April 5 & 6, 2011 - Jayden's Now Has Personalized CDH Awareness Items!
Jayden has his CDH Awareness items we can get from CHERUBS!
Personalized Congenital Diaphragmatic Hernia Awareness Ribbons with photo and name of a real life cherub made for family & friends to promote finding the cause, prevention and best treatment for CDH.
http://www.cafepress.com/cherubs/7768246
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Keep Jayden's memory alive on his 14 month birthday and support CHERUBS in any way you can. For our family & friends I can send you a copy of Jayden's personalized awareness ribbon to post on you profile picture for April 14th in support if you life. Our special little boy touched so many... help him & CHERUBS reach out to many more!
Personalized Congenital Diaphragmatic Hernia Awareness Ribbons with photo and name of a real life cherub made for family & friends to promote finding the cause, prevention and best treatment for CDH.
http://www.cafepress.com/cherubs/7768246
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Keep Jayden's memory alive on his 14 month birthday and support CHERUBS in any way you can. For our family & friends I can send you a copy of Jayden's personalized awareness ribbon to post on you profile picture for April 14th in support if you life. Our special little boy touched so many... help him & CHERUBS reach out to many more!
Thursday, March 31, 2011
March 31, 2011 - Cherubs Lost in March 2011... :-(
Please Pray for the families of all these Cherubs lost in March...
♥ Dougie ♥ Andrew ♥ Aurora ♥ Zoe S. ♥ Logan ♥ Maggie ♥
♥ Dougie ♥ Andrew ♥ Aurora ♥ Zoe S. ♥ Logan ♥ Maggie ♥
Monday, March 14, 2011
March 14, 2011 - Additional Entries from Mommy
(From Mommy's Facebook Page)
Saw Jay. I was fine until mom left. Then the crying came out in a bomb. I started telling him about this day & the more I said the bigger the tears. When we were there my mom told me Zoe was not doing well off ECMO I told Jay to be with her & help her be OK. PLEASE pray for her & her family! I LOVE HIM SO MUCH to think about today & all it means it's just TOO MUCH!
----------------------------------------
I just don't think I can handle day. Every little thing is making me BURST out in tears and I just can't stop crying and thinking about my Jayden at all. I truly feel I am going to crack and fall more than ever before. I just don't think I can handle SO MUCH pain!!! WHY HIM?? WHY HIM?? OH DEAR GOD WHY NOT ME!!!!!!!
Saw Jay. I was fine until mom left. Then the crying came out in a bomb. I started telling him about this day & the more I said the bigger the tears. When we were there my mom told me Zoe was not doing well off ECMO I told Jay to be with her & help her be OK. PLEASE pray for her & her family! I LOVE HIM SO MUCH to think about today & all it means it's just TOO MUCH!
----------------------------------------
I just don't think I can handle day. Every little thing is making me BURST out in tears and I just can't stop crying and thinking about my Jayden at all. I truly feel I am going to crack and fall more than ever before. I just don't think I can handle SO MUCH pain!!! WHY HIM?? WHY HIM?? OH DEAR GOD WHY NOT ME!!!!!!!
March 14, 2011 - Mommy's Message to Jayden...
(From Mommy's Facebook Page)
1 year ago today my Jayden returned to Heaven after fighting for life for 23 days. He truly was a brave strong baby and will always have my heart. I love and miss him MORE THEN LIFE ITSELF.
Fly high my precious Jayden mommy loves you ALWAYS!
1 year ago today my Jayden returned to Heaven after fighting for life for 23 days. He truly was a brave strong baby and will always have my heart. I love and miss him MORE THEN LIFE ITSELF.
Fly high my precious Jayden mommy loves you ALWAYS!
Sunday, March 13, 2011
March 13, 2011 - Jayden's New Video - Finally!!!
(From Grandma's Facebook Page)
After a false start out of the gates yesterday I think (crossing fingers) that we are good to go with Jayden's Reflection video. I still see so many slides that could be SO much better but that is probably the perfectionist in me. I fixed all the major errors that were found and got the missing slide back in. Please be merciful.
Tomorrow is Jayden's 1 yr angelversary. Perhaps it is fitting that I did not make the earlier deadlines. I hope he is proud. I know we are SO very proud of him!
Here is the summary for those who may be watching on their phones & can't view it.
------------------------------------------------
Jayden's Reflection Video - Happy 1st Birthday Jayden!
It has been a year since our Cherub angel Jayden was born and grew his wings. Although he is no longer with us, he is forever in our hearts and is still reaching out to touch others and help other families with CDH.
Please join us as we look back on his time. If you are touched by his and all the angel stories please go to http://www.cdhsupport.org/ -or- http://www.savethecherubs.org/ to learn more about Congenital Diaphragmatic Hernia and find out how you can support this most worthy cause. "Help Save The Cherubs!"
NOTE: Since this video was created we have lost 2 more Cherubs....
Fly high little Andrew M. & Aurora!
*** Friends in Germany - Sorry that YouTube blocked it.***
For more from Vanessa Cruz, visit her channel at TheVanessaCruz, http://www.youtube.com/user/TheVanessaCruz
For more from Jumoke Hill, visit his channel at JumokeTV, http://www.youtube.com/user/JumokeTV
--------------------------------------------------------
Thanks for all your love & support!!!
Alicia, Jayden & Shelly
If I missed any one it was not intentional, please know you are all remembered too!!
After a false start out of the gates yesterday I think (crossing fingers) that we are good to go with Jayden's Reflection video. I still see so many slides that could be SO much better but that is probably the perfectionist in me. I fixed all the major errors that were found and got the missing slide back in. Please be merciful.
Tomorrow is Jayden's 1 yr angelversary. Perhaps it is fitting that I did not make the earlier deadlines. I hope he is proud. I know we are SO very proud of him!
Here is the summary for those who may be watching on their phones & can't view it.
------------------------------------------------
Jayden's Reflection Video - Happy 1st Birthday Jayden!
It has been a year since our Cherub angel Jayden was born and grew his wings. Although he is no longer with us, he is forever in our hearts and is still reaching out to touch others and help other families with CDH.
Please join us as we look back on his time. If you are touched by his and all the angel stories please go to http://www.cdhsupport.org/ -or- http://www.savethecherubs.org/ to learn more about Congenital Diaphragmatic Hernia and find out how you can support this most worthy cause. "Help Save The Cherubs!"
NOTE: Since this video was created we have lost 2 more Cherubs....
Fly high little Andrew M. & Aurora!
*** Friends in Germany - Sorry that YouTube blocked it.***
If you would like to see Jayden's memorial video from 2010 you can view it at
For more from Vanessa Cruz, visit her channel at TheVanessaCruz, http://www.youtube.com/user/TheVanessaCruz
For more from Jumoke Hill, visit his channel at JumokeTV, http://www.youtube.com/user/JumokeTV
--------------------------------------------------------
Thanks for all your love & support!!!
Alicia, Jayden & Shelly
If I missed any one it was not intentional, please know you are all remembered too!!
Saturday, March 12, 2011
March 12, 2011 - A Letter to my Son for his 7 Month Birthday (Aug 19, 2010)
(From Mommy's Facebook Page)
To my son Jayden how I miss you so, everyday I cry inside because you're not here.
I miss your hand around my finger and looking into your eyes. I remember the first time I changed your diaper and took your temperature, the doctor said you calmed down when I did all those things. I think it's because you knew it was me.
Oh my sweet baby Jayden 23 days on this earth was just not enough and for that my "Lil' Man" I will always have the hurt of losing you just way too soon.
I WILL ALWAYS LOVE YOU!!!!
FOREVER YOUR MOMMY.
I miss your hand around my finger and looking into your eyes. I remember the first time I changed your diaper and took your temperature, the doctor said you calmed down when I did all those things. I think it's because you knew it was me.
Oh my sweet baby Jayden 23 days on this earth was just not enough and for that my "Lil' Man" I will always have the hurt of losing you just way too soon.
I WILL ALWAYS LOVE YOU!!!!
FOREVER YOUR MOMMY.
Thursday, March 10, 2011
March 10, 2011 - Jayden's Video & Reminders About Life...
Jayden's Video & Reminders About Life...
by Grandma on her Facebook Notes on Thursday, March 10, 2011 at 2:06 am
The reflection video is all but done. It needs a couple of minor adjustments & final proofing but those will go quickly. I had to make a major change in the music setup but I think it will work better overall & it helps me not to have certain clips rushed I felt were important not be rushed. I also found a way to add in a neat new feature I had not done in prior videos.
All week my mind kept going back to how precious life is & how important it is to treasure every moment we have as we DON'T know when it will be our last. I am still saddened that an important family member & their family has been shaken so deeply by the sudden loss of a close friend who seemed to have their whole life ahead of them & was cut down tragically last weekend by an undetected medical condition.
I also got an email this week from another family member that a relative who has been in a long battle with cancer had a new growth WHILE undergoing chemo. I worry another part of the family who we have lost contact with may be having medical issues (trust me, I am trying to reconnect!). And of course there is always the constant question of is today the day Marfan's takes my husband?
I try to stay positive and usually can, but this week, coming up on Jayden's Angelversary on Monday is just a little harder than usual. It is a reminder... Hug the important people in your life while you still can, treasure them & love them.
Don't forget & then have to say "Sorry, I never told you, all I wanted to say."
Love to all of you...
Shelly
by Grandma on her Facebook Notes on Thursday, March 10, 2011 at 2:06 am
The reflection video is all but done. It needs a couple of minor adjustments & final proofing but those will go quickly. I had to make a major change in the music setup but I think it will work better overall & it helps me not to have certain clips rushed I felt were important not be rushed. I also found a way to add in a neat new feature I had not done in prior videos.
All week my mind kept going back to how precious life is & how important it is to treasure every moment we have as we DON'T know when it will be our last. I am still saddened that an important family member & their family has been shaken so deeply by the sudden loss of a close friend who seemed to have their whole life ahead of them & was cut down tragically last weekend by an undetected medical condition.
I also got an email this week from another family member that a relative who has been in a long battle with cancer had a new growth WHILE undergoing chemo. I worry another part of the family who we have lost contact with may be having medical issues (trust me, I am trying to reconnect!). And of course there is always the constant question of is today the day Marfan's takes my husband?
I try to stay positive and usually can, but this week, coming up on Jayden's Angelversary on Monday is just a little harder than usual. It is a reminder... Hug the important people in your life while you still can, treasure them & love them.
Don't forget & then have to say "Sorry, I never told you, all I wanted to say."
One Sweet Day
Love to all of you...
Shelly
Monday, March 7, 2011
Friday, March 4, 2011
March 4, 2011 - Birthday Video Update
(From Grandma's FB Page)
OK, so it's obvious I have too many slides & NOT enough music. All the month markers are gonna have to go. Besides the dates in the pictures should pretty much set the timeline. Now to see what else I can cut or modify...
I would NEVER make it as a video editor. My head HURTS! It's worth it though for Jayden & CHERUBS...
OK, so it's obvious I have too many slides & NOT enough music. All the month markers are gonna have to go. Besides the dates in the pictures should pretty much set the timeline. Now to see what else I can cut or modify...
I would NEVER make it as a video editor. My head HURTS! It's worth it though for Jayden & CHERUBS...
Wednesday, March 2, 2011
March 2, 2011 - A letter to my Son on his 1st Birthday
(From Mommy's FB Page)
"A letter to my son on his 1st Birthday" by his Mom
Read Graveside on Feb 19, 2011
Posted to FB - March 2, 2011
One year ago today I welcomed the cutest, strongest, most perfect baby ever to come into the world and that baby was you. Every day I saw you fight like you never knew the words give up or let go and it was that strength you showed that told me to keep fighting for you and with you.
Then one day I went to your bedside and saw a baby still fighting to live trapped in a body that had already gave up and I knew that day I had to use the strength I had come to feel through you to let you go and finally be truly free and at peace, but I want you to know to make the choice to let you go was the hardest thing I ever had to do and every day I miss you more and more. I know I now have an angel always watching over me and for that I can smile even as I cry deep inside.
I want you to know CDH may have taken your life, but I will do ALL I can to stop it from taken any more because of the strength and memories you gave me, it may have been 1 year since you were born, but to me it feels like it was just yesterday.
I want you to know you are the BEST thing ever to happen to me and my proudest accomplishment and I will NEVER let you go or forget you. For ALL you gave me and ALL you have and will do I thank you and will ALWAYS LOVE YOU!
HAPPY 1ST BIRTHDAY Jayden,
Mommy's Lil' Man forever.
"A letter to my son on his 1st Birthday" by his Mom
Read Graveside on Feb 19, 2011
Posted to FB - March 2, 2011
One year ago today I welcomed the cutest, strongest, most perfect baby ever to come into the world and that baby was you. Every day I saw you fight like you never knew the words give up or let go and it was that strength you showed that told me to keep fighting for you and with you.
Then one day I went to your bedside and saw a baby still fighting to live trapped in a body that had already gave up and I knew that day I had to use the strength I had come to feel through you to let you go and finally be truly free and at peace, but I want you to know to make the choice to let you go was the hardest thing I ever had to do and every day I miss you more and more. I know I now have an angel always watching over me and for that I can smile even as I cry deep inside.
I want you to know CDH may have taken your life, but I will do ALL I can to stop it from taken any more because of the strength and memories you gave me, it may have been 1 year since you were born, but to me it feels like it was just yesterday.
I want you to know you are the BEST thing ever to happen to me and my proudest accomplishment and I will NEVER let you go or forget you. For ALL you gave me and ALL you have and will do I thank you and will ALWAYS LOVE YOU!
HAPPY 1ST BIRTHDAY Jayden,
Mommy's Lil' Man forever.
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