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!!!

an open apology.

dear papa,

   we are so thankful for you, and all the hard work you do to provide for our family.  we are especially reminded of how hard you work on nights like tonight, when you are working late.  to show our appreciation we made sure there was enough dinner that you could just warm things up quickly when you got home.
  however, there was a problem tonight.  you see, someone, we don't want to single anyone out, ate all of your brussel sprouts.  we are so sorry that you didn't get any.  please forgive us.

love,
your girls.

loving brussel sprouts.

feeling a little ashamed.

eating.

i'm going to share the complete back story up until now of shilo, and eating.  i may cry as i type this.  

lots of children with Down syndrome, actually lots of children with low muscle tone for any reason, have initial swallow studies.  these determine whether a child, swallows safely, or if he or she aspirates.  shilo had her first swallow study at some point during the fifteen day stay at birth.  she passed it with flying colors.  we were elated to not have to thicken her bottle since we had been down the aspirating/thickening road with abigail already.

shilo taking her first bottle at a few days old.

at one month old, shilo had become incredibly lethargic.  she couldn't stay awake to eat at all.  i knew she needed an ng tube, but we also had to figure out why she was so tired.  this was our one week hospital stay in december of 2011.  we found out she had hypothyroidism.  she had dropped from 4 lbs 15 oz at birth to 4 lbs 4 oz at one month old.  so we came home after a week with an ng tube, and on formula mixed to have higher calorie content.  we would bottle feed her for thirty minutes, and whatever she didn't take got pushed through the tube.

shilo with her ng tube and oxygen weighing just a little over 4 lbs.

we kept the tube in for about six weeks, until i finally stopped obsessing over the calorie count that the doctors were pushing us to get in her, and decided that since she was growing, i could take the tube out. while i still had a doctor who wasn't happy about it, i refused to obsess since it was likely she wouldn't grow well until after her heart was repaired.
we had that tube out from january until the end of february when she got sick and was hospitalized for three months.  most of you already know that story, but if not you can start here and read through it all.  we were in the hospital for about twenty four hours before they had to intubate shilo.
we ended up spending 13 weeks inpatient.  nine weeks of that, shilo was intubated, with a vent breathing for her.  so for nine weeks she had a tube in her throat.  she didn't suck.  she didn't swallow.  she just layed there, sedated.

our very sick little.

during that time period, shilo had a procedure called a barium enema, followed by a suction rectal biopsy.  the ins and outs of that aren't important so much as knowing that she had an allergic reaction to...something. and the best guess anyone had (although i don't completely buy it) was that it was barium.  barium, is also the substance they use in a swallow study.
so, after she was extubated, nobody was comfortable doing a swallow study.  we had a speech therapist come in the hospital, and help us get started in trying to get her to take a bottle again, but we were mostly on our own.  so by this point, shilo had no idea how to suck on anything.  she also no longer had a swallow reflex.  she was fine with the bottle being in her mouth, she just didn't know what to do with it.  she had forgotten during that nine weeks how to use her mouth muscles.
so, once again, we came home with an ng tube, until we were far enough out from heart surgery that they could place a g-tube.  the next six weeks between home, and the g-tube surgery are all sort of blurry.  i had just lived in the hospital for three months.  i was depressed, had huge anxiety issues, and was caring for a medically fragile kid along with my oldest daughter-whom was readjusting to expectations after three months of only seeing me on weekends.
all that to say, i don't remember exactly when it started, or when it got worse, but at some point, shilo began vomiting.  like projectile, not spit up.  a lot.  upward of twenty times a day most days.  if you take a kid who has forgotten how to use her mouth, and then throw in her only association with her mouth being vomiting, well, she's not interested in eating.
at some point, i accepted that she would never take a bottle again.  from july of 2012 when her tube was placed, until her first birthday, we dealt with puke.  all the time.  she was hooked to her feed pump most of the day because i would have to pause her feeds every time she puked.  there was no rhyme or reason.  sometimes she would puke after 10ml (1/3 of an ounce).  sometimes she wouldn't puke until she was two ounces in.  we tried different gerd medicines.  we tried apple cider vinegar.  it just didn't matter what we did.  she puked.  except at night time.  she never puked at night time.
once she was old enough, i did start trying with things like purees, puffs, and so on.  occasionally we got what we thought was a swallow.  she liked to try foods.  it was just a matter of figuring out how to swallow them.
in moments of 'mama can't take any more puking' desperation, i had searched the internet for ways to make it stop.  i came across something called a 'blenderized diet.'  essentially, all it was, was feeding a tubie real food, blended, then pushed through the tube.  and every account i read said things like, 'my kid stopped puking' and ' my kid was no longer constipated.'
so after her first birthday, we transitioned.  it was truly a miracle for me.  my kid stopped puking.  immediately.  she came off of oxygen.  she was no longer constipated.  her coloring changed from pale, to a healthy pinkish.  she started rolling over.  it was amazing the difference it made.
i had also heard that switching to real food often made children more interested in eating.  and it seemed to coincide.  she would occasionally swallow a puff, or a small piece of meat. but then i had multiple people tell me how risky it was to feed her that stuff.  and so i stopped.  and she completely stopped swallowing anything.  we even did a few hunger trials (not giving her food through her tube to invoke the feeling of hunger).
i tried a feeding therapist an hour and a half away.  after one time i decided not to go back.  everyone said the same things.  'she has to be able to swallow because she doesn't drool.'  'we aren't comfortable doing a swallow study because of the possibility of an allergy.'  'we're just going to keep doing these things that you've already been doing.'  'we can't do intense hunger trials because she is on diuretics still.'
i gave up trying.  we still gave her taste of things all the time.  but i quit all the things everyone told me to do. she continued to get speech through early intervention.
recently though, she came off of her last two heart meds.  and so i began researching again.  i came across a blog of a parent who did child lead weaning methods with the tube.  it's an intense thing to do, because you withhold food from your child so that they experience hunger, and are willing to attempt to eat.  i have been trying to have conversations with a few different specialist about it.  i'm working hard to get people on board, because we are going to do this.
shilo, is interested in eating.  we always feed her, her blend while we are eating.  we let her try what we are having.  but not until i finally decided to go for it last night did i realize that we probably aren't as far off from the goal of being able to eat orally as i had originally thought.
i have so many regrets when it comes to feeding stuff with shilo.  i wish that i had known to get a therapist to work solely on feeding as soon as we got home from the hospital.  i wish i had kept giving her the bigger chunks that she liked, and swallowed, instead of being scared.  i wish i had started giving her real food through her tube earlier to stop the puking.  but, at the end of the day, i can't change those things.
this, this made me feel like i might just be able to win this one though.  and, like so many things with shilo, i have learned to stick to my instincts about things instead of relying so much on the experts.  medicine is a practice.  and i know my girl much better than any of her specialist ever will.