[tri-med] Prayer Request

In the hospital where our little Philip was born, I left my name and phone 
number for the NICU staff to pass on to any new Trisomy families.  Well after 3 
years I received my first request.

Due to the new HIPPA rules I cannot give too much patient information since the 
parents have not given me permission.

However, I think I am safe to say this much.  The baby is full T18.  She was 
not diagnosed until a couple days after birth.  The parents were devastated.  
By the time I talked to them, they had pretty much accepted the fact that the 
baby would die.  Mom was hoping it would happen once all the family had a 
chance to see the baby.  Well that was last weekend.  Guess what.  The baby is 
still with us!!!  The baby does have some of the "typical" problems.  Now Mom 
is scared to take the baby home.  I have been checking in with them every 
couple days.  The baby is still in the NICU, and getting stronger.

I am asking for your thoughts and prayers to help strengthen this family and 
the baby.  I am going to see them again tomorrow and will ask if I can share 
more details.  I have mentioned this web site, but all of this is so new and 
overwhelming to them.  The baby will be 2 weeks old Sunday.

Thank you for you time and prayers. I will try to keep you updated with more 
information as I get permission and details.

-- 
Jackie, mom to Tina 13 yr, Tony 11 yr, Philip (Full T18) ^!^ 9/20/02 @ 6 mo

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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