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Trisomy 13 or 18?

post #1 of 13
Thread Starter 
Just wondering if there happens to be anyone else with a child with either of these. My DS was born two weeks ago tomorrow with full trisomy 13. He had a very bad day the day I went home from the hospital, and we thought we were going to lose him that day, but he has done much better since then. He is still in the NICU, but they are slowly weaning him off of his meds and the ventilator in the hopes that we might be able to bring him home. My husband's aunt and uncle had a baby with trisomy 18 who lived for close to a month, and we've found it helpful to have them to talk to.
post #2 of 13
I don't have experience with this but I just wanted to send you a hug.
post #3 of 13
Thread Starter 
Thank you!
post #4 of 13
Hugs to you momma.
post #5 of 13
post #6 of 13
Thinking of you. hoping you get time at home with your little one.
post #7 of 13
Congratulations on your baby!

Have you seen the Living With Trisomy 13 Yahoo group?
http://health.groups.yahoo.com/group...withtrisomy13/
post #8 of 13
: My DD has a partial trisomy 3 and 18q deletion and I know there are support groups out there for T13 like the one posted above, maybe you'll find one of them helpful. Good luck!
post #9 of 13
How's he doing, mama? I hope you get to bring him home and love on him in the comfort of your home
post #10 of 13
Thread Starter 
Thank you so much everyone. I did join the yahoo group the other day, although I haven't really figured out how to navigate around it yet. Josiah is doing surprisingly well right now. He is off of his blood pressure med and morphine and even though his vent has been turned down a lot, his oxygen levels have stayed high, which is kind of a miracle since they didn't believe that would be possible at first. He just started getting breast milk from a feeding tube two days ago and has been tolerating that really well today, so I feel a little more useful (like I'm actually "feeding" him). I know he could take a turn for the worse at any moment, but we are so thankful that we are getting all of this time with him. I get to cuddle with him every day, and that's awesome, and we are still praying that we can bring him home soon. I took his big brothers in today to see him, since I had taken his sister in the other day, and they were wonderful. My four-year-old, Cade, was very excited because Josiah was "crying" (although you can't hear anything with the vent in), and Cade was able to stroke his head and calm him down. He felt very responsible, I think : )
post #11 of 13
post #12 of 13
post #13 of 13
This looks like a nice site, lots of hope and kids who are beating the odds:

http://www.livingwithtrisomy13.org/

Other than that, I just have .
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