A change of plan

Yesterday the doctors spoke to Francesca and suggested that Mia stay just a little longer than originally planned. The reason being is that they have been having some success getting her to bottle feed with a special bottle designed for babies that have a hard time sucking normally. They want to get her to the point where she can bottle feed for every meal.


We discussed it again with them today and they feel very strongly that if Mia continues to do as well as she has been with this bottle, there may not be any need for the G-Tube. Mia underwent a full GI exam today and everything was normal. She could get the operation for the G-Tube if we wanted, but it may not be necessary.


This makes us very happy, because we really didn't want Mia to have to undergo any surgery. We fed her today with the bottle and she did really well. She drank the full amount (45 cc's) and then was very active and awake after the feeding.

The night nurse said she did well with the bottle and is gaining weight again. She started to lose a little bit when the doctors took her off of her liquid nutrients and put her on formula only.

We have also been in contact with a doctor in Boston who specializes in pediatric metabolic disorders. There is a good chance we will take Mia to see him once she is discharged from Stony Brook, just for a second opinion.