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.

grace.

i go through these periods where i become sort of stuck on one idea or concept.  what does that really mean?  what does that look like when done right?  right now, it's the idea of what grace really is: especially in relation to who God is, and how He offers grace to all of us.
so i've been reading, and just reminding myself over and over all day, for me, for abigail, for jason, for the strangers who say things to me that make me want to lose my mind:  grace.  grace.
i don't believe that grace means that disobedience gets a free pass.  instead, i think that when my big gets in trouble, and has to sit out playing with friends, i can hold her and tell her i'm sad, too, that she doesn't get to play.
and grace doesn't mean that when i lose my temper with abigail i don't need to try to reconcile with her. i need to apologize.  and then i need to forgive myself and move on.  because dwelling on my mistakes is not grace.
in reading lots of verses on grace the one that stuck out to me is 'when sin increased, grace increased all the more' (Romans 5:20).  i've been thinking through this and what it means.  and i quickly looked around at the church body i belong to, and felt it.
i love my church. it is full of a very diverse group of people sunday morning.  black and white.  young and old.  recovering addicts, people with histories of felonies, middle class, upper class, and the not so middle or upper class.  but, the thing i love the most, is that every person there seems to outwardly live their own mess.  i'm not talking about walking around bragging about the things we do that we shouldn't.  i'm talking about people who know each others struggles.  people who are honest and say, 'i've started drinking again, and got pulled over for a dui.  i need some prayer.  some love.  some help.'
but, the biggest, and greatest thing about our church is that with every ounce of my being, i can feel the grace. i think the 'sin abounding' thing isn't meant to be taken as increasing your sin.  i think, as i look around, the places where grace abounds more, are those places that are full of real people. honest about sin.  spilling it out abundantly.
and when i am in a place where grace abounds, it is like a fog that rolls in and out, around and through, taking with it the sin part and leaving behind only the grace.  the sun shining down burning off the sin making grace glitter and illuminate on each person-like the dew that's left on the grass after a fog.
i just have to take my shoes off and walk around on it.  to feel it.  i have to bend down and look closely at the way the light reflects off of each drop.  and i have to try to take pictures of it, zoomed way in, as to show every detail.  to know, for myself, that the beauty i'm experiencing is real.  is there anything, so marvelous, so remarkable as grace.
as i've searched, and searched, i've read through story after story that tries hard to explain grace.  but, alas, they do it know justice.  because the moment i think i might know it, something bigger and more beautiful takes place.  and i have to continue to search, and pursue.  hoping my journey leaves those around me being touched by the overflow of grace i'm discovering.

for from His fullness we have all received, grace upon grace.   John 1:16

long hospital stays.

i learned today of a friend of a friend who's settling in for a long hospital stay with their little.  while the situation is different than ours was, someone asked if i had any advice for a long stay.  i started to respond, but then realized i was writing a whole book.  so i thought i would offer it up in a blog post.  hopefully it will be helpful to her, but also to others who might come here.

so my two big things i heard a lot while we were inpatient, both from nurses and other parents were:
1) make sure to take care of yourself.
2) be strong for your little one.

here are my thoughts on that....

1)feel free to not get enough sleep because you want to sit and hold your baby.  feel free to sleep in the room because she's had a bad day and you want to be near her.  while it's important to take care of yourself, most of the people telling you that have never been where you are.  so feel free to figure out what works best for you.  while our little was intubated i got eight hours of sleep at night and a shower every morning.  i felt so guilty i wanted to puke most nights leaving the hospital to go stay at the ronald mcdonald house.  once she was extubated, i stayed in her room and went to the rmh to shower, eat, and take a little break here and there.  i slept there on weekends while jason stayed at the hospital.
so yes, it's important to try to eat, shower, and sleep.  however, the reason you are in the hospital is because you are taking care of your little.  so if things fall by the wayside, or you (like me) spend large quantities of time eating chips and drinking soda-when you get home you will likely go back to eating healthy.

2)feel free to lose it as much as you need to.  cry.  your baby doesn't understand you being strong or not.  and strength does not come from sitting in a room day in and day out with a sick baby and not crying.  i cried in the shower.  i went and ran up as many flights of steps as i could, then just sat and sobbed.  i cried while i ate alone in the rmh (others around me were a little uncomfortable the few times i did this).  i cried while i sat in shilo's hospital room.  if you have an older child, it's okay to cry too.  abigail saw me cry many times.  and we talked about how emotions are a good thing.

some other things i found helpful.

  if you usually have to pay for parking, figure out if there's a way to get it reduced, free, or a parking pass.  also, if you are paying for gas, talk to the social workers about help with that.

take as many free meals as you can get-gift cards, other people offering to bring you food, etc..  while our daughter had state insurance so we didn't have to pay for the actual hospital stay, eating, buying toiletries from the hospital (we only have one car and my husband had it), got expensive.  and while the rmh meals were great, there wasn't always one available, and some nights they were things i couldn't bring myself to eat, even for free. ;)

be honest about what you need.  if someone asks what you need, and what you need is someone to do your laundry, then hand it to them.  i had a few friends of  friends who wanted to help if they could, and i handed them a load of laundry, dirty underwear and all, and let them wash them.  it was a huge help for me time wise (i didn't want to take hours sitting in the rmh washing laundry).  even others cleaning your house, mowing your yard, so on and so forth.  people want to help, and they often don't know how.

don't be afraid to be the 'crazy parent.'  i went toe to toe with the doctors over different things many times.  by the end of our stay, they all respected me, and knew that i was informed about my kid.  on the flip side, the residual guilt i have over a few things are the ones that i didn't fight when i felt like i should have, and they turned out sucking for my kid.
that will lead into, do your best to let go of guilt day to day.  talk to a counselor if you need to.  there are social workers on staff that can help you as well.  and there are often patient advocates that can help you out as well.  don't feel silly talking to them.  it's their job.  and it's okay to need emotional help getting through something that's pretty hard.

some nice things to keep on hand:
lotion, lip balm, and nasal spray.  hospital=the driest air you've ever experienced.

stretch pants.  you can sleep in them, then wear them all day.  i find that even in my short stay i tend to change shape a little while living in a hospital.  so the stretch pants do a nice job accommodating my changing waist line.

cash.  quarters.  while most places take debit cards now, it's handy for the 10 p.m. vending machine runs because you missed dinner, or the deliveries because the rmh doesn't have a meal that night.

your own pillow from home (although i would leave this at the rmh.  i am a little paranoid of hospital germs coming home).

a blanket for the room that you don't mind throwing away when you leave.  the rooms are often cold. and then there's the germ factor of it touching the floor, or if the cleaners accidentally throw it in with the laundry, you don't want to be bummed that you will never see it again.

social media access.  this was important for me to feel connected, and keep people up to date.  i also appreciated being able to skype with my husband and big.

books, a kindle, a nook, whatever you do to pass your time with reading.  crafty material if you want crafts.  i made flowers to decorate shilo's bed, and i hung hearts from her ceiling and all over her walls.  she had the coolest room around.  i also made hair bows for her and abigail.

movies/access to netflix/music etc.  it helps pass the time.

if your kiddo can be dressed, button front pajamas or clothes (not over the head) so that tubes and wires can still be easily accessed, and your kid looks cute.  if they are hanging out in a diaper, baby legs, socks, and hair bows are fun ways to help you feel like you are still taking part in dressing them.


lastly, the best thing i did while i was there, was hang up pictures.  there was a picture on shilo's bed of her smiling.  it really did help the doctors who came in to see that she was a happy healthy little girl, who happened to be sick and in the hospital at the moment.  i also hung up some family pictures both for me, and for others to realize that while they might have been 'doing their job' this was my life.  and this is my daughter. and there are people at home that we are missing, and that are missing us.

if you do nothing else from this list, please do the pictures.

also, if you want to read about our 96 day hospital stay, it starts here.  and there is a happy ending.  it looks like this.





praying for all of those families in a hospital tonight.

love.

i can handle seizures like a pro.  when my big spikes a fever of 105 (which isn't completely uncommon when she is sick), i know ibuprofen and thirty minutes will work wonders.
but my little with a fever strikes fear in my heart like little else can.  there's words that dance around in there. taunting me.  

down syndrome.  somethings that isn't that big of a deal for us.  an extra copy of her twenty first chromosome. there are these things though.  these 'more likely' things that come along with that extra copy.  and those are the words that live in the recesses of my mind.
that is, until i pick her up, and she's warm. feverish warm.  and then they sprint forward causing my heart to beat faster, and my memory to remind me just how close we have come to loosing her.  they carry with them names of other brave warriors.

sometimes i hold her, and a song comes on, and i'm reminded how it was a song i had planned to use for her funeral.  because i thought there would be one.  and i thank God, over and over that there wasn't.  and then i pray, and beg, that He would let me raise both of my girls.  i love them.  i love being with them.  there is joy in there being.
so i rock little.  tears fall down my cheeks. they are being bottled, like so many before.  how is it, that i can love one so much?  

 
and i know, without a shadow of a doubt, that i would do it all again.  no matter how hard one tries, you will fall.  hard.  deep.  and you will allow your heart to get broken, if need be. love never fails.

help with the dishes.

but a moment.

i could feel it.  pressing in.  pushing.  taking.  i felt the urgency to take it all in quickly.  soak up every last second.  swallow the joy down deep.  drink in the laughter.

time.  it seems to constantly steal my babies from me somehow.  and there are days i can feel the urgency of it.  i can hear it yelling, 'pay attention, tomorrow they will be bigger.  older.  different.'  and i slow down.  i sit. 

 i stare.  i click over and over, trying to capture time.  my heart opens up and tries hard to drink deep, and swallow the love of the moment.