At the hospital they taught us how to feed her, "gravity feeding", meaning no apparatus that calculated/monitored her feedings. The hospital helped us locate an agency that supplied the syringes and tubes.
Half of her meals were formula and half were her oral keto meals. The nurse told us we could tape her tube to her belly but it left marks and messed with Aliyah;s delicate skin, so now I attach it to her diaper and most of the time she wears onsies so her tube won't be in the air.
Her little brother, Bruce who at the time in november was 7 months, found her tube interesting and always wanted to pull on it so I would make sure he never had a hold of it.
I have hired someone to give her swimming lessons. We had to wait 2weeks after surgery until Aliyah's tube can be submerged in water. She loves the pool!!! Eventhough it hurts me to see her have the feeding tube at least I can say I am doing everything in my power to see Aliyah is getting the best treatment out there!
Dr. Joshi wanted us to stay in the 3.5 ratio until further notice during the time of her tube placement.
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