[tri-med] Josefina

Hello everyone,

My wife Monica and I have been registered and following posts to this list 
for some time now after the birth of our daughter Josefina (1/1/06) who was 
diagnosed with partial trisomy 6p right after she was born.  It is probably 
needless to say how this impacted our lives from that moment on.  After 
spending her first 10 weeks in the NICU of the Chicago Children's Memorial 
Hospital, Josefina came home and is adjusting slowly to her new 
surroundings.  We thought this is a good time to introduce Josefina to the 
tri community as we begin the different challenges of raising a child like 
ours.
Josefina's main problem is the liver which is not very healthy and is not 
working properly in terms of eliminating bile in to the blood stream.  The 
liver experts here (world class professionals as I understand) can not 
determine the reason for this malfunction yet, so there will be an extensive 
follow up in the months to come.  Other complications she has are related to 
her heart (common among our kids as I learned) but we were told they are not 
as critical for now.  She had a PDA done already and a G-tube insertion.
I'd like to take this opportunity to also ask a question.  Josefina is on a 
every-three-hour feeding schedule (70cc of breast milk + some formula to 
fortify the milk to 27 cal).  She has been having a lot of gas accumulated 
(I know it is probably normal at this age) which is making her feel so 
unconfortable that right after she starts eating she would start cramping 
which in turn would exacerbate her reflux.  It is a vicious circle that is 
making feeding time a constant disconfort.  It is even preventing us for 
doing proper Speech therapy at home since she gets pretty upset by the gas 
pressure. Additionally, I wonder at what age do other kids her age (almost 3 
months) start spacing the feeding times to longer than every three hours, 
because by the time Josefina has to eat again she does not seem really 
hungry and having residuals from the feeding before causes her to reflux 
even more. She is taking 0.5cc of Zantac 2 times a day for the reflux (but 
does not seem to help).  Do you have any suggestions on how to overcome this 
situation?

Thanks!
Vladimir and Monica (parents of Josefina pT6) 

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

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