I want to share about Mother's Day - it was great - but want to upload some photos first. Will try to do that by tomorrow.
Tomorrow (Monday) Eliana has an appointment with her cardiologist. This will be his first time seeing her since she was released from the hospital. I'm not sure what tomorrow's visit entails in terms of testing. I would love prayers that all would go well for her. I'm guessing she'll have to have blood drawn and historically that hasn't been an easy one for her at all! I have no idea if any other tests are scheduled.
I'm going to be talking with him about Eliana's feeding. She isn't doing all that well. The feeding therapist that we have met with wants to have us eliminate her tube feedings during the day. She is hoping that if hunger is driving Eliana that she will eat better from the bottle. Right now she eats about 1/4 from the bottle and the rest from the feeding tube. That's a lot of ground to make up. We will be supplementing with the feeding tube at night to make up for what she is missing during the day.
Please pray for wisdom for our cardiologist in knowing what is best for Eliana in regards to feeding. We will need to figure out if this is alright for her. Also if we cut back on her tube feedings, we will need to know how much she has to have per day in terms of calories and also in terms of fluid. The balance of fluid has been critical for her with her heart issues. I'm not sure how this changes with her heart repair.
The feeding therapist feels that we are at a critical place. If we wait she is concerned that it will make it harder and harder for Eliana to eat on her own. She said problems could last for years. (Years??? I didn't want to hear that!) This is one of those times that I just have to trust that what they are telling me is best. I'm trusting that God is leading us to the people that we need to see and that the advice/counsel we are receiving is best for Eliana. Letting go and trusting can be hard, but I really don't have any other choice. It doesn't do any good to worry, so I'm trying to keep on trusting!
I'm also still trying to figure out the best bottles to use for Eliana. She is compressing the one we are currently using which obviously is less than ideal. I'm hoping to see an OT (occupational therapist) while we are at Duke tomorrow. She agreed that I could page her even though she is only supposed to see "in-patients". She was helpful to us when we've been in the hospital the last two times. Pleae pray for wisdom here too! I know that I may make mistakes in this area - and probably many others too - but I'm just trying to do the best I can and pray for wisdom for all of us that are caring for Eliana.
I'll post more when I know something. It will probably be late tomorrow. Have I mentioned how much I love your comments? I truly appreciate each and every one of them. Ya'll are a blessing to me and I often read them over and over again. I am thankful for you dear friends!