Jimmie puked up his tube at the start of his 6am feed this morning. So they left the tube out and tried to finish his feed by mouth. Jimmie just refused and went to sleep. Then he woke up hungry, sucking on his hands and fussing, so they tried again and again he struggled and finally gave up and went to sleep. Rinse and repeat . . . Rachael said he ended up going about 10 hours without eating before they gave up. Neither Rachael nor Justin has ever put the tube in, but they've watched very closely as it was explained and demonstrated. Rachael held Jimmie down and Justin put the tube back in with no problems.
That was a good feeling for them to know they can do that without help. Not so great feelings about the fact that Jimmie would rather starve and sleep then take a bottle.
Rachael has a call in to the OT from First Steps. Jimmie has an appointment with the GI people Wednesday and with the Neonatologist Thursday. Little Jimmie has pretty much decided he wants nothing to do with sucking and swallowing his food. The reasons why we can only guess. Of course Rachael suspects his throat hurts . . . He still refluxes and sometimes screams with it. Perhaps he just now has completely associated the bottle with pain. At any rate Rachael is not sure what to do. She's not sure if she should keep offering the bottle at every feeding and at times really push Jimmie to take some by mouth. . .? Or of she should stop trying altogether (and for how long?)so maybe he'll forget the bad associations with sucking and swallowing . . .?
These are all questions Rachael will be asking this week.
Rachael does have one little goal she has set on her own and is working on. She is very slowly upping Jimmie's volume at his feeds so that she can eventually start feeding him every 4 hours instead of every 3. This will help free up a little more time in between feedings for other things. Jimmie is tube fed over an hour so with all of the preperation, clean up and reflux precautions- there is little time to do much else.
Keep praying for Rachael too. We are encouraging her to spend some time on herself whether it be formal counseling or meetings with her pastor or both . . . She needs to enjoy her beautiful child and life in general. She doesn't want to miss Jimmie by looking and focusing only on his medical issues and obsessing over them with her thoughts. Pray she can take every thought captive to the Lord and receive his Divine Perspective and grace to deal with the hard parts. And please pray that somehow she can sleep. She is so sleep deprived at this point that even when Rod or Justin stay up all night on Jimmie duty she still can't sleep. Sleep deprivation can make you crazy in and of itself!
We are so grateful for all of your comments, encouragement and prayers! Our Jimmie is so amazing and so blessed!!!