Monday, January 7, 2013

Trial and Error...

My sweet girl before heading to work.
So Sunday Randy and I decided to see what would happen if we didn't feed Raygen through her g-tube in morning.  We wanted to see if we could get to eat and drink more by mouth.  Raygen is starting to eat more baby food, but the drinking is moving a little slower.
We turned her feed off at 6am and finally around 10am Randy was able to get her to start eating.  I had to take a picture from behind because I didn't want to distract her from eating.  Raygen eats best in her saucer with Sesame Street on, no joke, it works for her.  It took her about an hour to eat a whole jar of pears and she never really did start taking any liquid from her bottles.
We decided around noon to start giving her water and food through her tube again.  I don't think it was a complete failure but I think we still have a long way to go before we are off the tube.  I heard through Sisters by Heart website about a website called and have been talking with them and hopefully we can sign up and they can help us wean her.  It is a four week program that is web based since the doctors are in Europe but they have a 96% success rate.  How can you beat that?  Raygen did have a hard time sleeping last night so I am wondering if her system got out of wack with us changing up her routine.  I have no idea how to wean her off the tube, but I do know that somehow we have to let her feel hungry so she knows that eating helps take care of that and so far no doctors have helped us figure out a plan on how to do that.  The netcoaching program is about $6000.00 so we have emailed her doctors and I have been talking with the insurance company and hopefully they will help pay. 
We go see Nero on Thursday so wish us luck.  Please say a prayer for my girl.

1 comment:

  1. Hello,
    My son (who has HLHS) had a gtube. We discontinued his nighttime feeds and then little by little starting discontinuing day feeds. He started getting the hungry sensation. Of course we did this w/ the ok of his pediatrician. We had OT help with foods to get him to start eating. Have you tried a modified sippy cup? My son didn't use the gtube for months (maybe almost a year) until he got it out a few months ago. He was basically using it for meds...however his docs wanted to keep it in since he received the Fontan surgery during the summer. The docs wanted him to keep it incase he had trouble eating during/after the hospital stay. Here is my blog - if you would like to read about my son...


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