Lily saying good bye to the nurses
She went home with an NG (nasalgastric)tube for feeds at night, they run continuously on a pump. During the day she drinks 4 bottles. As her weight increases we can increase the amount she eats. She is on a very strict schedule, as we don't want to feed her too much too quickly.
As of today she weighs 16 lbs and has gained a pound in one week. This is of coarse on our scale at home. On Tuesday we will followup with nutrition for an official weight check.
Thursday September 2nd she will get her cardiac cath - please pray for her that day as there are risks involved, but it is something that is essential before they will do surgery.
We are enjoying every moment having Lily home. She is so happy, and thrives on the constant activity in our home. She just loves to be right in the middle of her siblings enjoying every moment.
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