I have Hope at home and there is hope in sight! Today the dietician that will be following Hope called. I talked with her about the fact that Hope is gaining weight daily and is no longer throwing up, on the proper milk mixture. I asked if we could up her volume at each feed and cut out one of the night time feeds, allowing her to go for a 6 hour stretch. She has agreed to let us try this until Monday, I have an appointment at the cardiology clinic, and they will assess if it's working or not. Please pray that Hope continues to gain at least 20g a day and we can stick with the new schedule. It will make a huge difference in Shawn's and my sleep schedule and sanity.
Some days I feel like I joined the army. My life is very structured now and revolves around schedules all day. There are a few times a day that I have a 2 hour window without meds or feeds. I'm not sure how I'll ever manage to go grocery shopping during the day or meet a friend for lunch. I'm dreading my first doctors appointment and working around feeds and meds to get there. I'm hoping this new life will eventually become so normal, and that I'll be able to do anything on the go!
I know I've said this before, but truly...Thank You to everyone that has been helping us through this journey. We would not be eating dinner, having naps or getting Sadie's energy out without the help of the people around us. We are overwhelmed by the kindness of others and feel completely humbled by it. We know at times we are busy and may fail to show our level of appreciation, please know that we are so appreciative.