I haven't mentioned this on the blog yet, but we will have to bring Vivian home from the hospital with an NG tube for feeding. It's very important for Vivian to get a certain amount of calories a day for her surgical healing. She does not have any reserve to pull from either while she is recovering and not desiring food, so we can't afford to wait for her to decide she is hungry and will eat.
In the next few days Ken and I will train on how to insert the NG tube into Vivian. She can keep it in for a week before changing. Vivian will most likely need supplemental nightly feedings for the next 6 months or so. I think in the next month and a half, the doctors will evaluate her handling the trauma of the NG tube, and if she continues to have a strong aversion to food, then we can have a simple operation of putting in a G tube. (Just realized I should explain. The NG tube goes through nose down to tummy and can be taken in and out as needed. G tube is put in in operation for direct access to tummy and is removed through another operation).
Admittedly, I am overwhelmed by this and was in no way prepared for feeding issues. Especially since she did not have feeding issues coming into the surgery! The positive side to this is we have a way to get Vivian extra nutrients for growth and brain development and healing. It will actually lift a burden off our shoulders that we have been carrying since the day we were given Vivian. We have been trying to feed Vivian and have her gain weight, and we have succeeded to an extent. She has only gained weight under our care, but slowly. I wish I had known or sought out some of those tricks to ADD calories into her diet. At home now I will add Pediasure to her oatmeal and extra butter on potatoes, etc.
Our discharge forcast is for midnext week.
We would love prayers for us in this new transition and for Vivian to be comforted or at peace with this "not-so-fun" process she will have to repeatedly endure. Love, Keri
Hopefully she will get used to the NG tube and it won't have to be used for very long. poor baby! I'm glad to see her walking. -Laura
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