[tri-med] McKyla Kay

I have talked with the mom of the baby I mentioned yesterday.  She has given 
permission for me to share information.

McKyla (Kylie)was born Sunday Feb 13 in a smaller town hospital.  She is about 
4 weeks early.  Weighed 4lbs, 6oz and 16 inches long.  She began having apnea 
events and was put on a vent.  Then transported to our hospital.  About 2 days 
later they received the inital information that she was full T-18.  I went to 
see her on Wednesday and she was off the vent an on C-PAP.  The parents were 
overwhelmed with information and had basically prepared themselves to not take 
her home.  The wanted her to stay alive long enough for out of state family to 
arrive and see her.  The were taking her off C-PAP last Friday or Saturday.  
They expected apnea events to take her within hours.  Well, that did not 
happen.  (Aren't these little ones full of suprises!!)

She is on 1/2 liter nasal cannula and SATing around 90%-95%.  I stopped today 
and they were trying to wean down the 02 but her SATs were in the low 80's so 
they bumped her up.

They are taking her into surgery on Monday to place a g-tube.  She was taking 
some formula by mouth then finishing by OG tube, but the bottle was stressing 
her out too much.

I am not sure of the exact heart issues, but they seem to be severe.  The 
family is so overwhelmed with the medical terms that mom could not explain the 
heart issues to me well enough for me to understand them.

I just wanted to ask for prayer for Kylie especially on Monday, and for her 
family.  As I get more information, I will pass it on.  Hopefully the family 
will eventually joint the list and keep you up to date themselves.  Also, they 
can ask questions on issues I have not experienced.



-- 
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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