It has been a very long week. Thankfully, Waverly is doing great. Her first night in the hospital was rough. She was in a lot of pain, but the nurse was wonderful and finally helped us get her to sleep. Tuesday we were able to slowly start formula through her tube. She tolerated it well and by Tuesday afternoon only needed Tylenol to alleviate the pain. Wednesday was a much better day. I was given multiple lessons on how to take care of the g-tube and by the evening they discharged her.
She was so incredibly happy to be home. She and I both slept so well (hospital bench-beds are not comfy!!). Thursday was my first day in charge of the tube. I am finally comfortable with it, but it was difficult getting all of the calories in her. Given the dose we can feed her, it would take us 13 hours of continuous feeding to get in her daily calories. This simply isn't possible.
Today was a better day with a better system. We met with the GI downtown and she was extremely helpful. She bumped her calories allotment down and gave us some changes to our plan to help us reach our target caloric intake. She reminded me that it is going to take some tweaking to find a schedule that works for all of us.
Throughout it all, Waverly has been a STAR. My sweet little girl is braver than anyone else I know. In the midst of all of this change, she constantly has a smile on her face. I can't even begin to imagine how the g-tube must feel inside of her and the change of being nourished in such a different way. She has been a trooper.
I haven't been able to process the reality of this new change yet. I have been so focused on taking care of her. For now, I am just grateful for medical science and our amazing team of doctors helping us put together the best plan for the kids.