Thursday, June 19, 2014

the weaning of the tube.

as you may have noticed, I am few and far between in my writing right now.  it's for good reason.  one I will share in more detail sometime in the future.  I have a few posts started for an adoption series I plan to do.  but, to be honest, afternoon napping is winning most days over blogging.  judge all you want to, this mama is tired.

anyway, wanted to update you all on just one of the fun things we are embarking on right now.  about six weeks ago, shilo took off in the eating department.  before this, she as great at putting things in her mouth, but they mostly got chewed and spit back out.  something started to click though, and more and more food was getting chewed and swallowed.  we were ecstatic.  we had been working towards doing a tube wean, and have officially started it.
a tube wean is when you stop feeding your child by g-tube in hopes of getting them to eat by mouth.  some people do it much differently than we are, but we are offering shilo foods throughout the day, and meals at meal time.  she feeds herself (she will not tolerate someone trying to feed her), and chooses what goes in her mouth.  here's the lay out of our wean, and how it's going so far.

day 1: 1/2 breakfast, rest of the day normal.
day2:  no breakfast, rest of the day normal.
day 3: no breakfast, 1/2 lunch, rest of the day normal.
day 4: no breakfast or lunch, normal dinner.
day 5:  no breakfast or lunch, 1/2 dinner.
day 6: no meals during the day via tube.

with this wean, we still have to give meds in the morning and at noon through the tube.  we are doing some water with this to help prevent dehydration, but not the normal amount, in hopes of helping her learn to drink by mouth as well.  to be quite honest though, I think we will be using the tube for fluids for a while after this, because she's just not good at swallowing drinks yet.  she also will continue to get whole milk after she's asleep at night, and once all food is gone, it's possible we will do some other things (blends or something of the sort) to help get some calories in her.  the goal is for her to not know we are using her tube though-which is why it would be when she is asleep.

we are on day five.  she's not eating tons.  she is eating.  and thus far we haven't seen any major changes in her demeanor.  today, for example, she ate about 1/2 cup of dry cereal at breakfast, a few puffs at the library (along with an eraser, two stickers, and part of a pine cone.  we count that as food in this situation), about 1/3 of a peanut butter sandwich, and some broccoli (a lot of this still gets chewed and spit back out, but some is starting to be swallowed).  she's had some water through her tube, and attempted drinks by mouth at each meal.  I remind myself that she is likely eating similar to what most toddlers do, and i'm not used to it because we can get a great balance in by tube. 

in all honesty, this sucks.  I hate not knowing if she's full enough at the end of a meal.  I hate feeling like i'm depriving my kid, even if it is under the supervision of a dietician and doctor.  but, in the end, I really hope, and pray, and believe, that this is the only way we will ever get her to take in nutrition by mouth. 

so to balance out the heavy, here's this hard thing we're doing right now, you should go watch this video of shilo doing awesome things!!!

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