Pierre Robin Network Message Central
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Failure to gain weight
Posted by Mimi on 12/13/2011, 9:05 pm
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.
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