the weaning of the tube: part 2.

a while back, I shared that we were doing a somewhat aggressive tube wean to attempt to get shilo to eat food by mouth.
the wean began on june 15th.  in the beginning we did weekly weight checks.  she lost weight.  also, once all daytime calories were gone through the tube, we would attempt to get some extra calories in by pushing a blend through the tube once she was asleep.
on august 9th, we got the official clearance from the dietician to stop the night time calories.  in a little under two months, shilo went from every sustainable calorie being through a tube, to everything she eats being by mouth.  (she still has not figured out how to drink so the tube is still in use for all liquids and meds).
I can't even share how well this went.  there are families who spend months, and even years attempting to get their kids to eat enough to not use the tube.  our only magic potion was working hard to follow shilo's lead-which meant, 'don't try to feed me.  i'll do it myself.'  we still have to cut everything up, and give her one bite at a time, but none of this seems like that big of a deal.  six months ago, shilo didn't know how to swallow.  at all.  and now, we have to buy her, her own meal when we go out to eat.
there are days where it feels like life has always been like this.  but, most days, I am in absolute awe of the fact that my child is eating by mouth.  she has no true texture aversions.  she doesn't like cold, and we are working hard on getting her to eat fruit.  so no ice cream (unless you warm it a bit in the microwave first.  weirdo.), and we are continually offering her different fruits over and over again with the knowledge that lots of children have to try things multiple times before the decide they like it.  we're making progress as we started out with no fruits, and she will now eat all types of melon, banana, and grapes, and is willing to humor me with a few bites of plum, kiwi, and strawberries before she refuses them.
she has favorites, like most toddlers.  (pasta of any sort, as you will see in the photo below). and there are meals where I have to remind myself not to get upset or panic that she didn't eat much, because all toddlers do this.  she puts food in her hair, and gets it all over herself.  her weight is more than it was before we started, and she's grown 1/2 an inch.  she tells us when she's hungry.  if she sees someone else eating, she asks for some (or attempts to grab it out of their hand or off of their plate).
I really hope this gives others some hope that their child will likely eat some day.  it may not go as easily or as quickly as it did for shilo, but it's possible!!

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!!!

welcome to my crazy, part deux.

if you remember, i wrote a little bit ago about switching shilo to a blenderized diet.  i let you all in, just a little bit, to my crazy with nutrition for my kids.  not all the way in, just a little.
and i would like to revisit that, now that we are a couple of weeks out.  first of all, i have NEVER been in love with an inanimate object before.  but, i have considered taking my blender out on a little date.  perhaps a little snuggling on the couch would be appropriate?  i'm not sure.  but seriously, this blendtec blender can pulverize just about anything, and i can push it into my daughter's belly.
but that's not really what i want to talk about.  i'm not the first parent to do a blenderized diet.  and i'm not the only one who can attest to what i'm about to write.  so while i'm aware that i sound like a complete nut, every last bit of it is true.
within a few days of switching from formula to blenderized foods, shilo rolled over for the first time from back to belly.  and then did it like a 100 more times.  she is sitting on her own for a few seconds at a time (and getting closer to doing it well all by herself).  when her therapist put her up on her hands and knees, she rocks back and forth, like children who are getting ready to crawl.  she is mouthing everything, like typical babies do.  she didn't do this before. she doesn't gag anymore.  at all.  i can put things in her mouth, and she doesn't gag.  most kids with low tone have issues with constipation.  nope.  not here anymore.  she just seems happier, more alert, and to be taking off with all of her skills.
and this thing deserves a paragraph all it's own.  my kid, doesn't. puke. anymore.  she went from puking anywhere from 2-20 times a day, to not having puked in....i don't know how long.  and when i say she puked all the time, i'm not talking like she spit up.  i'm talking projectile, multiple feet out from where she was, her whole stomach quaking and retching   and the biggest miracle of this, is that the meds we are pretty sure make her puke, have been increased.  still, no vomiting.  i'm not sure if any of you have cleaned up puke all the time before, but i tear up every time i think about it now.  i can also give her bigger volumes.  before we switched, 4 oz was about as much as she would tolerate during the day.  even then she still puked.  and they had to be run over so many minutes, causing us to spend at least a few hours every day sitting with shilo hooked to her tubing. her night time feeds could be bigger because she slept through them.  now i can do 5-6 oz. of food, a few ounces of water between meals, and push it in as fast as i can, and she's completely unphased.
the bigger things we know are coming, because she's not puking, she is more interested in putting things in her mouth, and letting me put things in her mouth.  she will suck on/chew on hard crackers i give her to play with during meals.  she will put the little fruit in a net (i'm sure there's a more technical name for these baby things) in her mouth and chew.  i think we aren't far off from her actually eating by mouth, because she no longer has negative associations from all the vomiting.
while it feels like common sense that feeding my kid real food as opposed to sugars and chemically enhanced milk proteins has made her feel better, i'm still in awe of how much it has changed our lives.  and the blender we have doesn't make it hard.  measure the stuff into it, push the soup button (sometimes twice) and i have a puree of awesome food for my kid, that is good for her.  the other night, she had soup with cannellini beans, kale, quinoa, carrots, and bluberries.  even my veggie and fruit loving big, likely would not have eaten that combination, at that age.
all right, thanks for sticking with me through my crazy excitement.  if you have a kid with a g-tube, and are interested in this, please, please, spend some time reading other people's experiences.  i have yet to hear anything negative about this. and very few doctors or even nutritionist are completely on board with this sort of thing, for whatever reason.  luckily shilo's dev. ped. is.  i am so excited to tell her what we are experiencing!  i feel like our lives are no longer dictated by a feeding pump, and puking.  the freedom is amazing.

for those who are interested in the nitty gritty, here's the breakdown of what we do:

on formula:  4 oz each at 8 a.m. noon, and 4p.m.  200 m.l. at 7 p.m. 200 m.l. at 10 p.m.  wait for the pump to beep so we could go to bed.  totaling around 506 calories a day.

on food:  breakfast, lunch, dinner at whatever times we are eating, and whatever we are eating (for the most part).  1-2 oz of water about 20-30 minutes before lunch, same before dinner.  i use milk as the liquid base for her meals, and then she gets 200 ml of milk at bedtime as well.  she also gets a slow flow of water all night long.  her fluid (without figuring in the fluid in the foods) equals around 18 ounces.  her food volume anywhere from 12-18 ounces.  and her calories are anywhere from 650-800 or more a day.  i have pretty much stopped counting calories, because every time i do, we are so far from where we were on formula.


*end of my crazy excitement*

welcome to my crazy.

all right. so i want to start off with a disclaimer, because in parenting, i experience a lot of guilt.  and the very last thing i want to do for anyone else, is heap guilt upon them.  so please, if you are reading this, do not be like, 'well obviously, i suck because i didn't do that.'  not the case.  this is what works for our family  *end of disclaimer*

when abigail was a baby i made all of her baby food.  all of it.  we were able to not ever buy one jar of baby food.  and i didn't buy any of the other things like puffs or toddler meals.  jason and i have both struggled to make good food choices, and we know that what children eat between birth and three, determines a lot of lifetime habits.  we wanted to try to give her the best start we were able to.  so she ate avocados  blended broccoli, beets, and so on and so forth.  whether it was because of that or not, i can't say for sure, but she loves foods that lots of other kids her age don't.  she likes beets, brussel sprouts, and is even known to ask for raw spinach.  i'm so grateful we were able to do this for her, and feel very proud that she got yummy healthy foods in the beginning.

when shilo got her g-tube, it didn't seem like an option.  i know that there is definitely an easy factor to heating water and mixing formula in.  but in reality, i am feeding my daughter chemically processed foods, when at this point in the game, if she could eat by mouth, she would be drinking whole milk.
so i caught wind of something called a 'blenderized diet for tubies.'  i was curious, and did some research.  after reading, and just thinking some more i realized i could blenderize healthy foods and give them to shilo through her tube.  there is no reason she can't have regular foods.  there is no reason my one year old needs to continue to be sustained by formula.
there are lots of ways to go about this.  some people keep track of calories.  some people have to add extra things to increase calories with smaller volumes because their children won't handle large volumes.  some people just blenderize whatever they would have fed their typical child, and push it through the tube.
i'm pretty new to this, but i'm guessing i'll fall more on the lackadaisical side, because there's no reason that shilo needs me to count calories at this point in her life.  if she were eating by mouth, i wouldn't be.  however, to keep specialist happy, i will likely keep track of at least some of the meals and calories in order to be able to give them a general, 'here's about how much she gets each day.'  (specialist can be a little obsessive about numbers.)

okay.  so the biggest obstacle in doing all this: blending.  making regular baby food is done easily in a food processor or store brand blender.  blending things like whole pears, tuna, and crackers into a liquid base that can be pushed through a small tube, not easily done with a regular blender.  so i began the search for an awesome blender.  i chose a blendtec.  they are expensive, but we were willing to do what it took to be able to feed shilo food.
i e-mailed the company to see if they had a medical discount for their blender.  they were AMAZING to work with.  and we were able to get a blender.  it arrived today.  i can't tell you how excited i was to push the same meal of tuna, gluten free rice crackers, cottage cheese, carrots, and pear through her tube, that her sister and i were eating.  same volume she gets from her formula, more calories, and way healthier.
i know that not everyone gets as excited about nutrition as i do, but this was something, for me, that helped me feel a little more in control of caring for shilo and her needs.  i often feel like i'm being told to feed her this much of this, give her this medicine, work on this skill, don't do this with her, and so on and so forth.  lots of those things are important, but for many parents, we start to feel overwhelmed by a list of do's and don'ts and begin to feel incapable of making important decisions without a doctors opinion.
i made this decision.  i get to decide what to feed my daughter.  and i get to feel a little more empowered as a mama. (and a big thank you to blendtec for helping to make this possible and affordable for our family.)