A lot of Trisomy 18 (Edwards syndrome) babies are born with umbilical hernias or other abdominal anomalies. That's probably why he has saran wrap over him.
There are at least 5 Peas that have lost children to trisonmy 18 in the past 5 years. I lost a son in 1990 to it. He lived 19 days. I rarely slept, I wanted to spend every waking moment with my child. It's a really tragic cluster fuck of congruential problems. I wouldn't wish it on my worst enemy.
Parents are usually so busy coping with the constant day to day care if there child didn't die before or right after birth they don't have time for message boards.
If you have a Tri18 baby you have a very short time with them and message boards are the last time expenditure you'd make. Unless of course, you are bat shit crazy.
I cherish every moment I had with my child and don't regret a single moment of his life. He was so precious.
I've gone on to have 2 healthy kids and count my blessings every day.
aww, 204, I hope this didn't open any wounds for you. This blog bitch is very sorry for your pain, and very happy that you found joy and blessings to follow.
That report on the UC Davis pepper spray said in no uncertain terms that Pike was wrong to spray the students, wrong to stand that close, and wrong even to be in possession of the pepper spray in the first place. It says he was never physically threatened. Which is pretty much what that awful video shows.
Because of the misconception that EVERYONE on this board is a bitch, I find the need to say this:
#204 - please accept my deepest condolences in the loss of your sweet baby. And thank you for sharing your experience with Tris8. I appreciate your taking the time and effort to give us a better understanding of how devastating this diagnosis is.
I see sa27s little boy has died. I hope she was able to get some good pictures of him. She said she was having a photographer come in so I hope he/she did a good job for her.
6Anonymous said... 6 To figure out who reads Breitbart and who doesn't, there was a thread right after his death. Travel Agent definitely said she loved him.
They all said he was a genius, Pineapple and all the wingnuts. Mapchic has him pinned on her genius board at Pinterest! LMAO!
April 12, 2012 12:24 PM
OMG and then there is the Pea lady who stalks threads like this and points out shit that no one really gives a shit about. You're a freak!
I looks like she updated a 70s era home. I get the impression that she is not a risk taking sort of person and the changes were likely made with selling in mind. That seems to be the way people do things now. No risks, no fun, think neutral so other people will buy it later. I think it is a sad way to live.
^^^^^
I think her house looks nice and obviously still in the process of getting it done. Oh well. I like it. I'd love to have that natural light. Also, as far as neutral, I love white and tan with very few accent colors. That doesn't mean I'm afraid of color. Call me boring, that's fine, but it's my house I live in and I purposely painted the walls tan!
173- There's no telling how long Simon could have lived. SOME T18 babies can survive with minimal complications for the first bit of life. Simon was a very wanted and loved little boy. Because of the manifestations he had that could be seen, the first MFS I saw gave him a 50/50 chance of not needing a lot of intervention. By the time I saw the second MFS who said 90/10 of not needing serious interventions, I was farther along and did not feel comfortable terminating the pregnancy. I can't even say for sure if I would have terminated if the first MFS had said 90/10. My stance was that Simon would not undergo serious interventions. I wanted his time here to be as peaceful and comfortable as possible. I did not want him to die on an operating table undergoing a surgery that only may have worked.
176-Simon was full-term. Yes, I did get pregnant through a sperm donor.
177-My first two children were fathered by my ex-husband. Ember, my daughter who passed, was fathered by someone different. Since divorcing, I have graduated college and am now in my Masters program. I have steady employment. I have a nanny for my kids. I have the support of family, even though they are not blood related. My roommate is my best friend, and his family treats my children and me like their own family.
181-No mental issues. Simon being dead is crushing my heart. Would it be better for you if I posted about how I feel like curling next to his little body and dying right along with him? Because I don't see how that helps. I know from experience that life moves on. Simon (and Ember) will be in my heart forever and I will see them both again. I know that for a time I will not want to wake up in the morning. It will take a minute-by-minute effort for me to function daily. But as time passes that excruciating, soul-crushing pain lesses. There will still be days where I can't concentrate from grief, but if I experience it as it comes, it will ease. For now, my priority is making sure my two big kids understand what is going on. That they know Mommy is still Mommy. That they receive the love and support they need and deserve. They were too young to remember Ember, and while we talk about her, Simon is the first that they are old enough to realize what is happening.
182-Yes, in a way I do feel like I was more prepared. For instance, I know for me, approximately how long the fog will last. I am also able to realize that I will be happy again. I know the steps that helped me grieve Ember. In a way, it feels as though I'm not as lost as before. That doesn't mean the pain is any less for Simon than it was for Ember. As far as medication, I took one pill just after Simon passed. I have a prescription for more but I'd rather be present and experience the pain than put it off.
189-Yes, there were times I was not able to be in the room with him. Since I was also technically still a patient at the other hospital on the campus, I did have to go back to my own room a couple of times.
190-191 is correct. I had an amnio. There was no mistaking. I get what you are saying about your cousin's daughter, as I was told similar things about my DS6 when I was pregnant with him. Simon was a different case all together. There were markers on the ultrasound, I was given the option of an amnio and I took it. I wanted to be prepared for whatever the situation was.
192-I was with Simon every second I was allowed to be with him. I posted on 2peas about Simon because to me he is my beautiful little boy. When there were times I couldn't be with Simon I did read 2peas messages. It kept my mind off occupied and made time pass faster until I could get back to him.
194-I had never heard of T18. After I was told it was one of the possibilities, I googled the hell out of it. It was only then I found an article discussing Bella Santorum.
196-I chose to celebrate all of being pregnant with Simon. It would not have done any good to mope and be depressed from the minute I found out there was a problem until...when? Forever? When would be an appropriate time in your opinion for me to find joy in life again?
200-The plastic wrap was to keep his body temp up immediately after delivery through his transport to the other hospital on campus.
204-I'm sorry for your loss. As already covered, there were times when I could not be with him. It wasn't an option.
214-Every picture I have of him is good. Even if it is blurry, it is good.
For the record, yes I read the blog. I come every couple of weeks and scroll through. I am here tonight because I can't sleep. I lay down and can't make myself drift off. My mind and heart are too full of emotions to sleep. I'm trying to waste time until my roommate gets home to talk to him and then hopefully I can sleep. If there are any more questions, feel free to ask. I knew when I posted there would be critical peas. I just don't care that there are. The only thing I would be hurt over is saying negative things about Simon. Whether Simon died before birth or lived to be 100, I am a proud new mom. My heart is hurting, but I am still just as blessed to be his Mommy as I am blessed to be the Mommy of my two older children.
225 comments:
«Oldest ‹Older 201 – 225 of 225 Newer› Newest»199 consider yourself lucky then I guess. whatever.
Can someone explain what the saran wrap type stuff on the baby is for? I feel like it's a stupid question but just humor me pls
200 I've been wondering the same thing.
A lot of Trisomy 18 (Edwards syndrome) babies are born with umbilical hernias or other abdominal anomalies. That's probably why he has saran wrap over him.
http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis
Here's some more info on trisomy 18.
Word to the wise: do not Google image trisomy 13 just before you go to bed. It was really upsetting.
There are at least 5 Peas that have lost children to trisonmy 18 in the past 5 years. I lost a son in 1990 to it. He lived 19 days. I rarely slept, I wanted to spend every waking moment with my child. It's a really tragic cluster fuck of congruential problems. I wouldn't wish it on my worst enemy.
Parents are usually so busy coping with the constant day to day care if there child didn't die before or right after birth they don't have time for message boards.
If you have a Tri18 baby you have a very short time with them and message boards are the last time expenditure you'd make. Unless of course, you are bat shit crazy.
I cherish every moment I had with my child and don't regret a single moment of his life. He was so precious.
I've gone on to have 2 healthy kids and count my blessings every day.
aww, 204, I hope this didn't open any wounds for you. This blog bitch is very sorry for your pain, and very happy that you found joy and blessings to follow.
To figure out who reads Breitbart and who doesn't, there was a thread right after his death. Travel Agent definitely said she loved him.
They all said he was a genius, Pineapple and all the wingnuts. Mapchic has him pinned on her genius board at Pinterest! LMAO!
((hugs)) to 204.
Anyone going to the pea get together in Texas? All of our favorites are going to be there!
((hugs)) 204.
YeeeeeeeeeeeeeeHaw!!!!!!!!!!!!! A Texas Pea gathering? Led by Cara i assume? Who else is going?
That report on the UC Davis pepper spray said in no uncertain terms that Pike was wrong to spray the students, wrong to stand that close, and wrong even to be in possession of the pepper spray in the first place. It says he was never physically threatened. Which is pretty much what that awful video shows.
Oh so the wingers were wrong AGAIN?
Because of the misconception that EVERYONE on this board is a bitch, I find the need to say this:
#204 - please accept my deepest condolences in the loss of your sweet baby. And thank you for sharing your experience with Tris8. I appreciate your taking the time and effort to give us a better understanding of how devastating this diagnosis is.
I see sa27s little boy has died. I hope she was able to get some good pictures of him. She said she was having a photographer come in so I hope he/she did a good job for her.
6Anonymous said... 6 To figure out who reads Breitbart and who doesn't, there was a thread right after his death. Travel Agent definitely said she loved him.
They all said he was a genius, Pineapple and all the wingnuts. Mapchic has him pinned on her genius board at Pinterest! LMAO!
April 12, 2012 12:24 PM
OMG and then there is the Pea lady who stalks threads like this and points out shit that no one really gives a shit about. You're a freak!
I think it's interesting. Thanks, 206.
I find your outrage...delicious 215. Tasty.
Well, given how they like to re-write history (see: their now dirty, shameful love for all things GWB), someone needs to keep track of 'em.
Jesus H. Christ...can you imagine who else is on Mapchic's "genius" board? Torquemada? Cotton Mather? Joe McCarthy?
I looks like she updated a 70s era home. I get the impression that she is not a risk taking sort of person and the changes were likely made with selling in mind. That seems to be the way people do things now. No risks, no fun, think neutral so other people will buy it later. I think it is a sad way to live.
^^^^^
I think her house looks nice and obviously still in the process of getting it done. Oh well. I like it. I'd love to have that natural light. Also, as far as neutral, I love white and tan with very few accent colors. That doesn't mean I'm afraid of color. Call me boring, that's fine, but it's my house I live in and I purposely painted the walls tan!
196 - that's how I found the peas, being stuck at the hospital with my baby!
20 - you and me both! I don't even go tan. Off-white is as daring as I want to go. I use color elsewhere, but I don't want red freakin' walls.
New space is up!
173- There's no telling how long Simon could have lived. SOME T18 babies can survive with minimal complications for the first bit of life. Simon was a very wanted and loved little boy. Because of the manifestations he had that could be seen, the first MFS I saw gave him a 50/50 chance of not needing a lot of intervention. By the time I saw the second MFS who said 90/10 of not needing serious interventions, I was farther along and did not feel comfortable terminating the pregnancy. I can't even say for sure if I would have terminated if the first MFS had said 90/10. My stance was that Simon would not undergo serious interventions. I wanted his time here to be as peaceful and comfortable as possible. I did not want him to die on an operating table undergoing a surgery that only may have worked.
176-Simon was full-term. Yes, I did get pregnant through a sperm donor.
177-My first two children were fathered by my ex-husband. Ember, my daughter who passed, was fathered by someone different. Since divorcing, I have graduated college and am now in my Masters program. I have steady employment. I have a nanny for my kids. I have the support of family, even though they are not blood related. My roommate is my best friend, and his family treats my children and me like their own family.
181-No mental issues. Simon being dead is crushing my heart. Would it be better for you if I posted about how I feel like curling next to his little body and dying right along with him? Because I don't see how that helps. I know from experience that life moves on. Simon (and Ember) will be in my heart forever and I will see them both again. I know that for a time I will not want to wake up in the morning. It will take a minute-by-minute effort for me to function daily. But as time passes that excruciating, soul-crushing pain lesses. There will still be days where I can't concentrate from grief, but if I experience it as it comes, it will ease. For now, my priority is making sure my two big kids understand what is going on. That they know Mommy is still Mommy. That they receive the love and support they need and deserve. They were too young to remember Ember, and while we talk about her, Simon is the first that they are old enough to realize what is happening.
182-Yes, in a way I do feel like I was more prepared. For instance, I know for me, approximately how long the fog will last. I am also able to realize that I will be happy again. I know the steps that helped me grieve Ember. In a way, it feels as though I'm not as lost as before. That doesn't mean the pain is any less for Simon than it was for Ember. As far as medication, I took one pill just after Simon passed. I have a prescription for more but I'd rather be present and experience the pain than put it off.
189-Yes, there were times I was not able to be in the room with him. Since I was also technically still a patient at the other hospital on the campus, I did have to go back to my own room a couple of times.
190-191 is correct. I had an amnio. There was no mistaking. I get what you are saying about your cousin's daughter, as I was told similar things about my DS6 when I was pregnant with him. Simon was a different case all together. There were markers on the ultrasound, I was given the option of an amnio and I took it. I wanted to be prepared for whatever the situation was.
192-I was with Simon every second I was allowed to be with him. I posted on 2peas about Simon because to me he is my beautiful little boy. When there were times I couldn't be with Simon I did read 2peas messages. It kept my mind off occupied and made time pass faster until I could get back to him.
194-I had never heard of T18. After I was told it was one of the possibilities, I googled the hell out of it. It was only then I found an article discussing Bella Santorum.
196-I chose to celebrate all of being pregnant with Simon. It would not have done any good to mope and be depressed from the minute I found out there was a problem until...when? Forever? When would be an appropriate time in your opinion for me to find joy in life again?
200-The plastic wrap was to keep his body temp up immediately after delivery through his transport to the other hospital on campus.
204-I'm sorry for your loss. As already covered, there were times when I could not be with him. It wasn't an option.
214-Every picture I have of him is good. Even if it is blurry, it is good.
For the record, yes I read the blog. I come every couple of weeks and scroll through. I am here tonight because I can't sleep. I lay down and can't make myself drift off. My mind and heart are too full of emotions to sleep. I'm trying to waste time until my roommate gets home to talk to him and then hopefully I can sleep. If there are any more questions, feel free to ask. I knew when I posted there would be critical peas. I just don't care that there are. The only thing I would be hurt over is saying negative things about Simon. Whether Simon died before birth or lived to be 100, I am a proud new mom. My heart is hurting, but I am still just as blessed to be his Mommy as I am blessed to be the Mommy of my two older children.
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