the sound of joy.

after being stuck in construction traffic for over an hour we stopped for dinner.  the girls were restless from sitting in their seats for so long.  jason and i were tired from a weekend away from home and our own bed.  we sat at the table working hard to not let our exhaustion and frustrations spill over into our parenting.  i colored pictures with abigail, and we signed with shilo while she nibbled on crackers (and spit them back out).  at the end of the meal, i held shilo on my lap, and abigail tickled her, and did her usual silly antics to try to make her laugh.  jason and i were both smiling and enjoying watching our girls interact.
but all the time we were sitting there, i could feel it.  i'm mostly used to stares at this point.  our family causes people to do double takes, likely because they are just trying to figure it out.  adoption?  two different dads?  what's going on here?  and does that little one have Down syndrome?  i get it.  we stick out a bit.  but the woman at the table behind us was flat out staring.  not occasional glances.  not the awkward look away when she notices you noticing her.  staring.  and for a moment, i wondered if abigail was being too loud.
but, she wasn't.  she was being joyful.   i wanted to share our story with her.  i wanted to tell her how we almost lost our little, twice, and that i can't help but be filled with amazement at the fact that she's still here.  i wanted to tell her that abigail had every reason in the world to act jealous of her sister.  but instead, she loves her.  and the thought crossed my mind.

this morning, i got up with little at 5:30.  seizing and vomiting.  then smiling.  then some more seizing and vomiting.  then laying in my arms and smiling up at me.  two doses of diastat.  sleeping.  smiling.  at some point, i became worried that she also hadn't peed since 6:30 last night.  and as 9:00, then 10:00 passed, and she still didn't go, i knew i had to call the doctor.
so, a trip to the doctor, a blood draw, an x-ray, and an ultrasound of kidneys and bladder.  she smiled at the ultrasound tech.  she commented on how amazing it was that a little girl that had, had such a rough day could still smile.  and the thought crossed my mind again.

joy can interrupt the longest of days.  but it doesn't generally whisper.  joy is loud.

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.