So last week after talking with our awesome new OT we decided that we could come up with a diet for Raygen so we could stop pumping her full of food all night. I have been a firm believer that feeding her all night long has been the reason she doesn't sleep well and that she seems to have an upset tummy and gas (sorry TMI) issues. So with a calculator Randy and I sat down and went to work. Thank goodness for my husband he worked out a great plan.
So her new feeds are:
5:30am 120ml water with Miralax
7am 100ml food with 60ml flush
10am 100ml food with 60ml flush
1pm 100ml food with 60ml flush
4pm 100ml food with 60ml flush
7pm 100ml food with 60ml flush
10pm 100ml food with 60ml flush
and a 20ml water with her aspirin in there wherever
So her total volume for a day is 1100.
So our goal is to feed her every 3 hours, but to work the 10pm feed into the others. So as we work the bolus up we can take away the 10pm one. I am going to start trying to feed her baby food before each bolus. She hasn't been eating that much by mouth since we have switched, but she is taking the bottle more, so one step forward two back, right?
I am pleased to say though that she does seem to be sleeping better. Does she still wake up, yes, but she is going to back to sleep easier and I think as time goes on it will only improve. My life right now does not resolve around 8am and 8pm anymore and it's a wonderful feeling. Almost normal, Almost.
So Thursday we see Dr. Park, Raygen's Cardio doc. Please pray for her. She is going to have an x-ray, echo, and ekg. Although the appointment isn't physically painful it is very emotionally painful for her. She cries the entire time and it is hard for her to be touched and messed with. I'm praying for good news. I have no reason to believe we wont have good news, but you never know.