Stella Johnson
Active Member
I usually love Christmas but this year I couldn't wait for it to be over.
My sister's baby isn't going to make it. They did a sono last Friday and there was fluid around the baby's lungs. First they said they would try to drain it or do a csection and then drain it.
On Christmas Eve they did another one to figure out the game plan and the fluid was everywhere. It's in all the organs and under the skin.
They keep saying no chance of survival. So this pretty much wrecked Christmas for us all.
It sent Grandmonster into a tailspin. She's so manic no one is taking her calls anymore.
Christmas Eve SO and I were supposed to have a party at his house. We planned to make prime rib roast and a ton of other stuff. He even got a Christmas tree and he's Jewish. WHen I got the news about my sister it was about noon. I was a total wreck so I left work. I picked up difficult child from my friends house, went to SO's house and collapsed and cried. I had to tell difficult child because I knew she would hear everyone talking. difficult child cried all day long until she fell asleep. I didn't think she would take it so hard but she really is torn up.
We ended up cooking some of the food and took it to my sister's house to try make her feel a little better. Her in laws came as well as Grandmonster.
Grandmonster walked in bawling and handed my sister a baby cap she had made. We all ate and opened our gifts to eachother. difficult child ran up and hugged my sister and said she was really sad for her little cousin. She told her she really wanted her. I tried to make difficult child feel better by telling her Bailey would be our angel now to look over us. difficult child doesn't want her to be an angel. She wants her to be a baby.
That night my sister kept having really bad stomach pains. It continued for a couple of days and I finally talked her into going to the hospital. Her doctor and the Perinatologist came in and checked on her. Her uterus is too small for a bikini line csection. If they did a C it would have to be the old fashioned one which can cause even more damage. They looked at the baby again and said she will probably pass away in the next week. WHen she does, they will induce labor and she will have it vaginally.
I had still been praying constantly and had it in my head that somehow the baby was going to make it through this and the doctors were all wrong until that night at the hospital. It hit me like a ton of bricks.
I've wanted another baby for so long. I was so looking forward to my sister having this one. I hand painted all the wall hangings for the baby's room. I helped her hubby paint the walls and ceiling. Bailey's room is completely finished. Grandmonster made a thousand different baby blankets that were so beautiful. I've been cross stitching a quilt for Bailey. difficult child even made a set of fairy dolls out of clay for the baby. Now difficult child asked if the baby could be buried with them.
Christmas day we went to SO's family's house for dinner. Took difficult child to her grandparents house afterward. She's staying until today. I'm glad she's there and can get all this off her mind for a little while. I really needed a break to just fall apart for a little while. I can't do that when she's here.
Yesterday I stayed in my pj's until 4 watching Lifetime movies. Finally took a shower. SO has been really good to me since all this happened. He took me out to one of my favorite restaurants for Oysters Rockefeller. Came home and watched a movie and went to the hot tub.
I've had a major flare up with the RSD. When I first got it, my hand was hotter than the rest of my body. Felt like it was on fire. Now my hand is freezing cold all the time. I can't warm it. It wakes me up all night long.
I have one more nerve block and it's on Monday. This will be number 10. Still no remission.
I've been researching other treatments. Everything is experimental and insurance doesn't want to pay for any of it. Guess they would rather pay for oxycontin for the rest of my life. There is a doctor in Florida that does Hyperbaric Chamber treatments. SOme have gone into remission or at least gotten some pain relief from it. Found a few other docs doing ketamine IV's. I don't knwo what I'm going to do. Between this and the baby I feel like I'm losing it. I actually look forward to going to work. It kills my hand to type at work but at least I can think of other things to get my mind off of it.
If you are curious what RSD/Crps is this link explains it well.
http://www.rsdhope.org/
Sorry I seem to have written a book today. Guess I just needed to get it all out.
Steph
My sister's baby isn't going to make it. They did a sono last Friday and there was fluid around the baby's lungs. First they said they would try to drain it or do a csection and then drain it.
On Christmas Eve they did another one to figure out the game plan and the fluid was everywhere. It's in all the organs and under the skin.
They keep saying no chance of survival. So this pretty much wrecked Christmas for us all. It sent Grandmonster into a tailspin. She's so manic no one is taking her calls anymore.
Christmas Eve SO and I were supposed to have a party at his house. We planned to make prime rib roast and a ton of other stuff. He even got a Christmas tree and he's Jewish. WHen I got the news about my sister it was about noon. I was a total wreck so I left work. I picked up difficult child from my friends house, went to SO's house and collapsed and cried. I had to tell difficult child because I knew she would hear everyone talking. difficult child cried all day long until she fell asleep. I didn't think she would take it so hard but she really is torn up.
We ended up cooking some of the food and took it to my sister's house to try make her feel a little better. Her in laws came as well as Grandmonster.
Grandmonster walked in bawling and handed my sister a baby cap she had made. We all ate and opened our gifts to eachother. difficult child ran up and hugged my sister and said she was really sad for her little cousin. She told her she really wanted her. I tried to make difficult child feel better by telling her Bailey would be our angel now to look over us. difficult child doesn't want her to be an angel. She wants her to be a baby.
That night my sister kept having really bad stomach pains. It continued for a couple of days and I finally talked her into going to the hospital. Her doctor and the Perinatologist came in and checked on her. Her uterus is too small for a bikini line csection. If they did a C it would have to be the old fashioned one which can cause even more damage. They looked at the baby again and said she will probably pass away in the next week. WHen she does, they will induce labor and she will have it vaginally.
I had still been praying constantly and had it in my head that somehow the baby was going to make it through this and the doctors were all wrong until that night at the hospital. It hit me like a ton of bricks.
I've wanted another baby for so long. I was so looking forward to my sister having this one. I hand painted all the wall hangings for the baby's room. I helped her hubby paint the walls and ceiling. Bailey's room is completely finished. Grandmonster made a thousand different baby blankets that were so beautiful. I've been cross stitching a quilt for Bailey. difficult child even made a set of fairy dolls out of clay for the baby. Now difficult child asked if the baby could be buried with them.
Christmas day we went to SO's family's house for dinner. Took difficult child to her grandparents house afterward. She's staying until today. I'm glad she's there and can get all this off her mind for a little while. I really needed a break to just fall apart for a little while. I can't do that when she's here.
Yesterday I stayed in my pj's until 4 watching Lifetime movies. Finally took a shower. SO has been really good to me since all this happened. He took me out to one of my favorite restaurants for Oysters Rockefeller. Came home and watched a movie and went to the hot tub.
I've had a major flare up with the RSD. When I first got it, my hand was hotter than the rest of my body. Felt like it was on fire. Now my hand is freezing cold all the time. I can't warm it. It wakes me up all night long.
I have one more nerve block and it's on Monday. This will be number 10. Still no remission.
I've been researching other treatments. Everything is experimental and insurance doesn't want to pay for any of it. Guess they would rather pay for oxycontin for the rest of my life. There is a doctor in Florida that does Hyperbaric Chamber treatments. SOme have gone into remission or at least gotten some pain relief from it. Found a few other docs doing ketamine IV's. I don't knwo what I'm going to do. Between this and the baby I feel like I'm losing it. I actually look forward to going to work. It kills my hand to type at work but at least I can think of other things to get my mind off of it.
If you are curious what RSD/Crps is this link explains it well.
http://www.rsdhope.org/
Sorry I seem to have written a book today. Guess I just needed to get it all out.
Steph
I'm so very sorry.
