Friday, November 30, 2012

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*

Monday, November 26, 2012

monday, monday....

just to help set the tone for what i felt like today, for some ridiculously absurd reason, abigail woke up at 2:30 this morning, and asked if she could get up.  every ten minutes.  for two hours.  i am not a kind person when my sleep is lacking.  and when abigail doesn't get enough sleep, she is higher energy than normal off the walls sort of behavior.  so exercising kindness and patience with anyone today was a stretch.
add to that, that mondays are often our ridiculous day.  therapy in the morning.  either our deaf role model or parent advisor in the afternoon.  and ballet.  by the end of monday i am done.  so adding in a horrible night of sleep compounds that to making today a less than stellar day.
now, i'm certain that some day, i'll look back and laugh.  probably a day when i've had more sleep.  but a lunch time mishap was all it took to have me throw in the towel.  actually, there were multiple towels involved.
shilo is on a completely blenderized diet.  it's glorious.  i spend time either measuring out, or adding things in, to whatever we are eating, blend it with some sort of liquid, and voila.  an awesome meal that can be pushed through a g-tube.  lunch time was no different.
sometimes, if whatever i have made is thicker, or has some chunks, i'll have trouble getting things to go through.  i've quickly learned the tricks for this.  and while todays didn't seem too thick, i kept having trouble getting it to push through easily (i will likely end up with massive forearms that look extremely freakish compared to my not so muscular physique).  so i did my go to trick of pulling it back.  once you can get it to pull back, you can often get it to push back forward just fine.
one push forward, and somehow, the syringe became dislodged from the extension tubing (that hooks to shilo's button).  blenderized food, literally, exploded in my eyes.  i physically was unable to open my eyes.  i was trying.  not happening.  shilo is crying because she has food on her as well.  and abigail is telling me not to do that ever again.
i sit for a few seconds dumbfounded  and temporarily blinded.  when i realize sight is not being restored, i drop down and crawl/feel my way to the kitchen where i flush my eyes continually for a few minutes.  when i'm able to open them slightly, abigail is standing there staring at me.  'sorry you got food in your eyes mama.'
i send jason a text to tell him that i'm done for the day and he should come home.  his response (paraphrased), 'you'll have to take both girls with you to ballet, i'm going to be pretty late tonight.'
so i bathe shilo, put both girls down for a nap, clean our dining room from the explosion, and then bathe myself.  i have just enough time to sit down for a few minutes before our parent advisor should be arriving.
when i shared this story with jason, he laughed.  so i'm pretty sure it's funny.  he also told me there is a syringe that often slips for some reason, and that he has had trouble with it.  always good to know those sort of things.  oh, and he definitely got home late.  like three hours late.

moral of the story:  mondays suck.

Wednesday, November 21, 2012

thankful.

so the days following 'perfect sunday' were a little less than perfect.  monday morning started with shilo having some sort of episode, and off we drove to the happiest place on earth: a children's hospital's emergency department (whoever said it was disneyland has clearly never spent time in the emergency room with their kids).
as all parents know, by the time we got there the episode ended.  so the visit started by me trying to explain to two nurses and a resident that i brought my daughter in because her head was to the left.  it went well, and they didn't think i was crazy.  like at all.  (sometimes sarcasm through a screen is hard to pick up.  they did think i was crazy).  to add to the 'there's nothing wrong with your kid' stream of thoughts, shilo, who rolled all the way from back to belly, with no assistance, for the first time sunday, was rolling continually every direction possible in the crib.  finally i physically made the face shilo was making for a few hours that morning.  neuro was consulted (for shilo, not me).
at this point it seemed like people were starting to believe me. so after lots of three letter test, and a little under 36 hours later, we returned home.  shilo did not have a stroke.  she doesn't have aai.  her eeg showed no active seizures.  so really we have no answers.
however, i am glad, happy, thankful, and all those other good emotions, beyond words, that we are not spending this thanksgiving in the hospital.  because last year we did.  and it was fine.  but this year, i want to blend up some awesome turkey and trimmings and push through shilo's tube.  i want to go around the table, each telling what we are thankful for.

but last year, thanksgiving was a great day.  i hadn't seen abigail in ten days, and she hadn't yet met her little sister.  jason had gone home the day before, and came back thursday with abigail in tow.  it was our first day getting to be all together as a family of four.
the day is one that will long play out in my mind.  i have an image of exactly where i was when abigail caught sight of me, and ran the rest of the way to me.  i remember abigail's first reaction to meeting her sister.  i vividly remember eating our thanksgiving meal in the cafeteria of the university of kentucky hospital.  and i remember how very teeny tiny our little was (around four and a half pounds at that point).


first meeting

thanksgiving feast.

nothing better than styrofoam plates and plastic trays.

too big newborn sized clothing.


shilo's middle name, jendaya, means 'thankful.'  we love name meanings, and when we were praying about a birth mom who was having a little girl, and scheduled for a c-section on november 25th, our adoption attorney, and good friend, told me that this little girl's name would mean thankful.  so that was what we prayed for her, well before we knew she would be our daughter.
and she came earlier than the 25th.  and she is our daughter.  and we are thankful for the love and joy she brings to our family.  we are thankful for the choice of life, in a situation where lots of doctors push for termination.  we are thankful that we were chosen to be shilo's parents.
and just this week i finished the book 1000 gifts.  and this book sort of fit perfectly with life and my heart right now.  i've wrestled often, and shared openly, over sick children, and dying children, and a good God.  and this book sort of journeyed me through some of my emotions and made them raw and real, and rubbed some healing balm on them.  it reminded me how important it is to be thankful in things big and little.  and it reminded me of my little, and how much she is teaching me about being thankful.

i don't have a list of 1000.  i am considering it.  but i do want to end with a list of things i am thankful for.
*an old home full of beautiful woodwork, and lived in blemishes, that remind me of the others who have called this home before us.
*screaming that ensues whenever papa arrives home.
*friends who are always willing to take on our big when i need help.
*a husband who loves me and laughs with me often.
*a big girl who is quick to call on Jesus when something is wrong.
*a little with round pudgy fingers that search for my neck, even with her hearing aid, so she can feel me sing.
*a van that makes getting littles in and out easier, and has no payments.
*a garden that grows fresh food for our family to enjoy.
*a cocoon that will reveal a butterfly (or moth) in the spring, being watched by a big.
*drumming with a little, who loves to feel the music.
*listening to a big sing, and watching her dance.
*a house that overflows with joy and love.
*learning to rejoice in 'first' bigger than ever before, even if they are months later than a typical child.
*getting papers strewn about with random letters because a big is learning to write.
*a papa who dances with his girls.
*a friend who says kind words when she doesn't even know how much i needed to hear them.
*a blender, so shilo can eat the same things that we are.
*the wrinkles that i am beginning to see on my face in pictures.
*the gift of getting to be a mama, even when my children are not flesh of my flesh.
*the way my husband kisses my forehead when i am sad.
*how my big thinks that i look amazing when all i have done is put on a dress.
*the way my little's almond shape eyes crinkle, and her whole body wiggles along, when she smiles.
*how much my two daughter's adore each other.
*being able to see my big's tummy mommy in her every time she smiles or laughs.
*music.
*warm baths.
*for a life that feels full and beautiful, even on hard days.

Sunday, November 18, 2012

the perfect sunday.

mid-novemeber in indiana, often finds one feeling bitterly cold.  today, that was not the case.  it was nice enough this afternoon that sweatpants and a sweatshirt sufficed to keep all warm, big and little, out in the sun.
sundays can feel a little hard for me right now.  in an effort to stay clear of the germs of the season, i keep both girls home with me (because even if abigail gets something, shilo is getting it too).  i like church.  i like watching abigail run around with her friends.  i like getting to talk to other grown-ups.  i love the music, and listening to our pastor passionately talk about the Bible.  i love the meal every sunday offered to all.  i love the community i'm part of.  and so, right now, i often find myself sort of feeling down on sundays.  it's just the day that leads up to the start of another week of therapies and appointments, to do list, and knowing i'm going to fall short.
but today, today shilo got to have three healthy meals pushed through her g-tube.  she had a whole day with no formula.  and then to really show off her awesome, she rolled from her belly to back by herself for the first time.  oh yeah, and then she did it about fifty more times like she has always been doing this.  and this afternoon, she was fussy during nap.  and jason and abigail were already outside.  so i snuggled her on the couch, and she slept on me.  my arm fell asleep.  there were toys strewn everywhere, dishes to be done, and my heart reminding me how quickly this went the first time around, and beckoning me to stay, and hold on the a little for as long as i can.  so i did.
when she awoke, she wiggled and looked up, and crinkled those almond eyes, and grinned that wide, open mouth grin, and made every thing not yet done, seem to not matter.  we joined big and papa outside.  they were digging the last of the potatoes and onions.  big cheered every time they found one.  shilo rolled around on a blanket.  and i tried to capture some parts on camera.

the night ended with putting away laundry, too loud music, dancing big, rolly little, and little house in the big woods.  when all was quiet upstairs, i still had lots of catch up to do.  so i picked up, tucked away, threw away, washed up, and thought.  in the background was my favorite music.  peaceful.  calming.  and full of praise.  and i stood there, praying, hoping, that days like today are forged in my children's memories, more than my moments of impatience; that when abigail grows up, she will have an image of me listening to soft music, and cutting up pineapple in the kitchen.  and that she too will remember days like today, as being perfect.






 thankful for perfect sundays, and time as a family.

Saturday, November 17, 2012

i love you.

i think most people know this, but then again, maybe not.  this is the sign for 'i love you.'



we sign it to shilo quite often, while wiggling our hand.  and lately we have noticed an attempt at her signing it back.  i would say coincidence, except that she does the same thing every time.  she tries to point her pointer finger, and she wiggles her hand.  and i was finally able to catch it on video.  so enjoy our very smart one year old signing 'i love you.



video

Thursday, November 15, 2012

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.)

Saturday, November 10, 2012

one year.

in the past year, our lives have changed. a lot.  a lot, a lot.  there has been great.  there has been good.  there has been bad.  there has been horrible.  it has, by far, been the fastest, and longest year, of our lives.
and the thing that has brought about these changes.  this great and horrible.  is one sweet little.

shilo jendaya.  born on november 11th, 2011 (11/11/11 for those who get excited about those sort of things).  her name means 'God's gift' and 'thankful.'  she has embodied both of those well.
a quick recap of her first year of life medically speaking: two heart surgeries, one surgery to place a g-tube and ear tubes, two codes, 120 days in the hospital (96 consecutive, and the others were broken up), nine weeks intubated, 11 weeks five days in the picu, and five e.r. visits.
that list seems overwhelming to read.  but it doesn't include the other things in our lives from this past year.  one big sister madly in love with her little sister.
one papa becoming completely smitten, for the second time, with a very tiny little girl.
and one mama's heart, being filled beyond capacity, with the love for another little.
the last year of our lives have stretched our family, making it stronger than we knew it could be.  it was a hard year.  i don't want to do it again.  but, i'd do it all over again for moments like. these.
everyone who came to shilo's adoption finalization!!
snuggling with my two girlies
papa and shilo catching a few winks together.
our celebration photo when shilo was extubated nine weeks and one day after being intubated.
sisters having some skin to skin time.
big beautiful eyes, smiling at mama for the first time since being home.
matching pajamas (and possibly some fear of being dropped.....
oh, those smiles.
vacation!!!
seriously, her smile gets bigger, and more beautiful each time, it seems.
her, 'i rocked ohs six months ago today, and look at my scar' picture from october 23.
snoozing on mama.  oh, to hold a sleeping baby, it's like heaven.


and now, the little girl who has taken us for the ride of our lives is one.  it's hard to believe.  it feels much faster than it did with abigail.  happy birthday sweet little.  our lives are so blessed because you are in our family.




and with that, all were done with my picture taking, and ready for bed.

Monday, November 5, 2012

little house.

for the past little while (probably nine months) i have been reading chapter books to abigail at night time.      
 it is one of my favorite times of day.
 we both lie in her bed, and i read words that weave into stories and pictures for her.
 
she giggles.
                                      
and i try to soak in every second of her being four.
                                      
shilo is done at seven p.m. every night.  we lay her down, she goes to sleep (but not before pulling her oxygen off that she is still supposed to wear at night). we don't hear from her again until around eight a.m.  no book reading for her.  yet.

thank heaven, for little girls.