Hi just watched your video and wanted to share mine. You can search him under Kai Yi 136 days. I just lost my son after 4 month he was bored with undiagnosed CDH.. He was recovering very well but he was reemitted to the hospital with sudden brain swelling after 3 month from ecmo to surgery.
It's been so hard and my heart aches for you too..
I am in tears. My son Caiden who is now 9 months was born with CDH but it wasn't diagnosed until hours after he was born. I too do not take anything for granted as he wasn't supposed to be here according to some drs. but here I am looking at 1st birthday party ideas. :)
@WifeOfMarine11 Thank you for your comments. I saw your son's crawling video. What an amazing little guy! All of these babies are miracles. I'm so glad you're ready to celebrate his first birthday. It's a very emotional milestone.
@WifeOfMarine11 Thank you for your comments. I saw your son's crawling video. What an amazing little guy! All of these babies are miracles. I'm so glad you're ready to celebrate his first birthday. It's a very emotional milestone.
my daughter sophie was born withe cdh at 29 weeks she was also a survivor she is now 3 years old. your video brought tears to my eyes as it brought back so many memories of what we went through. sophie has also got a video on here its called sophies story.
@w4k3l1n Wow, 29 weeks. Doctors can be such miracle workers these days! She is 3 now, that is so wonderful! I shall look for Sophie's story. I just now saw this comment. Thank you for sharing your CDH story!
this situation reminds me of my own son who is a survivior of CDH also. He is now 6 and doing great after two repairs one at 2 days old and one at 3 and a half years old. Trey is the light of my life and watching your baby makes me think of all the stuff we went thru back then and feel so happy and blessed he lived. Your story was inspiring. my email is lisaw21172@yahoo.com
@chbruiser Thank you for telling us about your survivor. I always get nervous when I hear about repairs at age 3 because it reminds me that CDH is never "over," but is a continuing journey. I'm so glad your son is doing well. I just now saw your comment--my inbox has been overflowing lately with Facebook stuff so I am so sorry I have not yet written to you but I plan to! Thanks for your comment and email address.
I lost my son to CDH at 5 weeks old. Your son is absoloutly amazing! This brought me tears of joy and sadness!. Take every moment in and yall are so blessed!!! Congratualtions!! (I know it's late)
@klee131 , thank you so much for your note. I am so sorry that you lost your son. I want you to know that I don't take a moment with him for granted, whether he's laughing with me, singing EIEIO, having a little tantrum, or filling his diaper. Every second with him is precious and he has taught so many people to savor the time we have because none of us really knows how much time that will be. Thank you for your post and God Bless your family. I am so sorry for the loss of your sweet baby.
@Kurby2001 Kurby, Last I heard your little guy was born and doing AWESOME! I am so glad everything has been going well. God bless your family. I'm so glad our video could give you hope and that I could contact you through youtube. What a wonderful thing technology can be!
@Kurby2001 Oh my, I am so sorry to hear that! I was thinking about a different baby, a little boy, born in New York state to a young couple, and I thought for sure their signature was "kurby." I am so sorry I confused you with another commenter. My deepest apologies, and prayers for your sweet angel baby girl. :**(
Thank you very much for your kind words. John MIchael is six months old now and doing very well. I hope that he does as well as your son! I'm so glad that he is doing so very well. We have put our trust in God from the beginning, too. :)
My son had CDH and is now 15. He had the surgery at 8 days old and spent 2 months in the hospital. I delivered him at Columbia Presbyterian in New York. He is completely normal, very smart and plays numerous musical instruments. We are so proud of him and the decision we made to let God decide if he would stay with us. It was the right thing to do, but difficult. Pray God your baby turns out the same way! Good luck
@tisjuliana It's really awesome to hear about an older CDH survivor, to know that our son can live a normal life like your guy has been doing. God is so good.
This was a beautiful video and song too. Did you write that? This really touched me, I am in tears. Thank God little John is alive and well.
gentlemothergoose 1 month ago
Hi just watched your video and wanted to share mine. You can search him under Kai Yi 136 days. I just lost my son after 4 month he was bored with undiagnosed CDH.. He was recovering very well but he was reemitted to the hospital with sudden brain swelling after 3 month from ecmo to surgery.
It's been so hard and my heart aches for you too..
kjiah 5 months ago
I am in tears. My son Caiden who is now 9 months was born with CDH but it wasn't diagnosed until hours after he was born. I too do not take anything for granted as he wasn't supposed to be here according to some drs. but here I am looking at 1st birthday party ideas. :)
WifeOfMarine11 1 year ago
@WifeOfMarine11 Thank you for your comments. I saw your son's crawling video. What an amazing little guy! All of these babies are miracles. I'm so glad you're ready to celebrate his first birthday. It's a very emotional milestone.
AlaskanTeacher 1 year ago
@WifeOfMarine11 Thank you for your comments. I saw your son's crawling video. What an amazing little guy! All of these babies are miracles. I'm so glad you're ready to celebrate his first birthday. It's a very emotional milestone.
AlaskanTeacher 1 year ago
my daughter sophie was born withe cdh at 29 weeks she was also a survivor she is now 3 years old. your video brought tears to my eyes as it brought back so many memories of what we went through. sophie has also got a video on here its called sophies story.
w4k3l1n 1 year ago
@w4k3l1n Wow, 29 weeks. Doctors can be such miracle workers these days! She is 3 now, that is so wonderful! I shall look for Sophie's story. I just now saw this comment. Thank you for sharing your CDH story!
AlaskanTeacher 1 year ago
this situation reminds me of my own son who is a survivior of CDH also. He is now 6 and doing great after two repairs one at 2 days old and one at 3 and a half years old. Trey is the light of my life and watching your baby makes me think of all the stuff we went thru back then and feel so happy and blessed he lived. Your story was inspiring. my email is lisaw21172@yahoo.com
chbruiser 1 year ago
@chbruiser Thank you for telling us about your survivor. I always get nervous when I hear about repairs at age 3 because it reminds me that CDH is never "over," but is a continuing journey. I'm so glad your son is doing well. I just now saw your comment--my inbox has been overflowing lately with Facebook stuff so I am so sorry I have not yet written to you but I plan to! Thanks for your comment and email address.
AlaskanTeacher 1 year ago
I lost my son to CDH at 5 weeks old. Your son is absoloutly amazing! This brought me tears of joy and sadness!. Take every moment in and yall are so blessed!!! Congratualtions!! (I know it's late)
klee131 1 year ago
@klee131 , thank you so much for your note. I am so sorry that you lost your son. I want you to know that I don't take a moment with him for granted, whether he's laughing with me, singing EIEIO, having a little tantrum, or filling his diaper. Every second with him is precious and he has taught so many people to savor the time we have because none of us really knows how much time that will be. Thank you for your post and God Bless your family. I am so sorry for the loss of your sweet baby.
AlaskanTeacher 1 year ago
THANKYOU SO MUCH! You have given us so much HOPE!
Kurby2001 2 years ago
@Kurby2001 Kurby, Last I heard your little guy was born and doing AWESOME! I am so glad everything has been going well. God bless your family. I'm so glad our video could give you hope and that I could contact you through youtube. What a wonderful thing technology can be!
AlaskanTeacher 1 year ago
@AlaskanTeacher I do apologize but our little miracle did not make it past her 6th day......
Kurby2001 1 year ago
@Kurby2001 Oh my, I am so sorry to hear that! I was thinking about a different baby, a little boy, born in New York state to a young couple, and I thought for sure their signature was "kurby." I am so sorry I confused you with another commenter. My deepest apologies, and prayers for your sweet angel baby girl. :**(
AlaskanTeacher 1 year ago
@AlaskanTeacher No harm done. Take care :)
Kurby2001 1 year ago
Thank you very much for your kind words. John MIchael is six months old now and doing very well. I hope that he does as well as your son! I'm so glad that he is doing so very well. We have put our trust in God from the beginning, too. :)
AlaskanTeacher 2 years ago
My son had CDH and is now 15. He had the surgery at 8 days old and spent 2 months in the hospital. I delivered him at Columbia Presbyterian in New York. He is completely normal, very smart and plays numerous musical instruments. We are so proud of him and the decision we made to let God decide if he would stay with us. It was the right thing to do, but difficult. Pray God your baby turns out the same way! Good luck
tisjuliana 2 years ago
@tisjuliana It's really awesome to hear about an older CDH survivor, to know that our son can live a normal life like your guy has been doing. God is so good.
AlaskanTeacher 1 year ago