Posted by gabriela
on 3/4/2012, 9:51 pm, in reply to "Failure to gain weight"
190.48.158.18
hola mimi soy la mama de facundo el nacio con el sindromeel 23 de marzo a los 9 dias le operaron la mandibula alos 33 le hicieron la traqueostomia ya los 11 meses le cerraron el paladar y ahora estoy con el tema que le estan x hacer la gastrotomia o sea el botn gastrico te juro que te entiendo y es un momento de mierda que nos toca vivir pero tambien nos toca vivir de nuestro hijo que se la re banca y el es un bebe neurologicamente sano y esta muy bajo en peso y no lo podes mantener quieto y adelgasa mas .mimi un besote tda la suerte y quedate tranqui ellos son re luchadores si necesitas algo avisame
: I take care of my grandson who is 8 weeks and
: has Pierre Robin Sequence. It is difficult
: for him to eat, breathe, and sleep. We are
: using a Haberman nipple. He has gone from
: 15 percentile to 1 percentile. This past
: week he gained zero. We are seeing a
: nutritionalist and speech pathologist in two
: days, then the surgeons on the cleft team.
: We are adding formula powder to the breast
: milk. Still he will not eat more than 2-3
: oz. per feeding. He falls alseep and spits
: up if you try to wake him and feed him. I am
: so worried that I am watching my grandson
: slowly die. I am so upset. He is adorable.
: I feel so helpless.
:
: Mimi
:
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