easter.

i was pretty excited for sunday.  for the first time, in six months, we were going to church as a family.  jason goes every week, but the girls and i have been sitting it out because of my huge fear of germs due to the potential for a virus to make our little very sick.  again.
we had shilo's lunch blended and ready.  i had packed abigail's gluten and nut safe lunch the night before.  i had awesome dresses ready for the girls...shilo was going to get to wear the one that abigail wore for her first easter.  last year's easter was a little less than celebratory.  abigail looked cute in her dress, and shilo looked cute in her new hairbow and baby legs.  but, the whole breathing through a tube in her throat while in the picu, put a damper on the day.

easter 2012

you have likely figure out at this point, that things didn't go as we had hoped.  papa and abigail got to go to church.  mama and shilo got to go to the emergency room.  shilo woke up unable to hold her head up.  we were a little surprised since this is what she does when she has had a seizure at some point in the night that was fairly big.  she had been on her meds for a week and a half at this point.  so we continue with the morning, and figured she would nap it off like she has in the past.  she had small seizures all during breakfast. and then after breakfast, she would seize a few times, and then puke everywhere.  i called neuro who said to give her an extra dose of meds (since she had likely puked the first one up).  she promptly seized and puked that one too.  so we went to the hospital.  she's fine now.  she was fine that afternoon.

we did, however, manage, to get some pictures of the girls in their dresses before shilo puked on hers. they didn't turn out great.

i feel like this could land on awkward family photos.

but next year, we WILL be getting some great pictures.  we WILL all be smiling, and happy.  and we WILL all be well. little agrees.

i'm fine.  why were you so worried?

choosing to remember.

a year ago, i was awake.  all night.  holding and swaying, singing and praying.  exhausted and frightened i held a little.  all night. last night i turned on the same playlist that i listened to then.  beautiful peaceful music played.  holding and swaying.  singing and praying.  exhausted and thankful i held a little.  she molded into the crook of my elbow because that's where she belongs.  her little eyes fluttered.  her body relaxed, her breathing became rhythmic.  

a year ago today, multiple doctors and nurses rushed in a hospital room.  they resuscitated a tiny little girl, breathing for her with an ambu, and pumping her chest with their hands to keep her heart going, and blood flowing through her little body.  they put a tube down her throat to breathe for her.  and it stayed there for a long time.  her mama sat and tried to think of words to tell a three year old about her sister dying.  there were tears.  there were doctors who seemed so heartless.  there was the constant rushing in of nurses and respiratory therapist to use the ambu again.  there was non-stop beeping.  there were lines and cords, plugs and wires.
and somewhere, although it didn't feel like it at the time, there was some small whisper of hope.  of future, life, and laughter.  of smiles some day, and milestones to meet.  of a sister who loves fiercely, a papa who swoons, and a mama who can't get enough.

the ambu was always close by, and got used quite often.

it is amazing the difference a year can make in the life of a little.  we are thankful beyond words that we have a sweet little who is still here with us.  smiling.  loving her sister.  and smitten with her mama and papa.

more sitting practice.

wearing the pirate hat her sister made her (i have no idea why it's a pirate hat).

playing with her sister.

'every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.'  james 1:17

shilo.  gift from God. one year later.

a new vocabulary word.

shilo has been on a blenderized diet for around two months now.  it has completely transformed our lives, for the better.  no more puking or gagging.  no more constipation.  no more hours of being hooked to a feeding pump.  she recently came off of zantac completely (reflux medicine) and can sleep flat in her bed (instead of with her mattress at an angle).  when i think backwards to all of this, my eyes tend to fill up with tears.  i've had a few people suggest that maybe it was just the type of formula she was one.  but we had tried multiple formulas, and nothing ever changed.
our most exciting development, though, is that she is really interested in eating. by mouth.  she watches our forks from plate to mouth.  she wants to be part of meals.  and as always we continue to work with her on her oral feeding skills.
but it's become somewhat disheartening.  everyone keeps saying, 'oh she will get it.'  or, 'just give her time.'  the thing is she's not getting it.  she doesn't gag.  at all.  she loves food in her mouth.  she even moves it around with her tongue.  but she doesn't have a swallow reflex anymore.  it's completely baffling because she doesn't slobber at all.  so either she doesn't produce much saliva, or she swallows her saliva.
we've been working with an o.t. on eating stuff.  and tomorrow a speech pathologist starts.  but after many a conversations someone finally said, 'you know it's possible she has nerve damage from being intubated so long.'
i politely agreed, hung up, and jumped on google scholar (google scholar has medical articles, and reputable sources, where as if you just google something, you may or may not be getting truth).  i came across numerous articles on extended intubation and something called dysphagia.  dysphagia boils down to being a swallowing disorder that can be anything from tongue issues to the esophogus not doing what it should.  i read article after article.
then i came across one that made my heart sort of stop.  it was on pediatric patients who had open heart surgery and the risk factors for dysphagia.  i read through the numbers and statistics and looked through the list of things that put a child at higher risk for having issues:  under three-check, intubated prior to surgery-check, transesophogeal echocardiogram-check (an echo is a picture of the heart by ultrasound.  after ohs they do this by putting a probe in the throat to make certain everything is repaired before closing the chest), intubation of more than seven days-check.  sounds like shilo was a pretty high risk case for having dysphagia.
i continued to read.  and came across the lines about how a child who has this will do best if they have intense speech therapy as soon as possible.  nope.  we didn't get that.  matter of fact, we are almost nine months out from surgery and we are just now getting ready to start speech.
so we are taking deep breaths here.  with each new vocabulary word, label, diagnoses, that comes along with our children, i am always surprised at how disheartened i feel.  shouldn't i have this down by now.  both of our children have multiple diagnoses.  but this one stings a little more than others.  it isn't like when we found out she was deaf and just shifted to signing and finding other ways to communicate.
it's more of the wondering if i will be washing g-tube extensions for the rest of my life.  it has me considering that the blender i make jokes about being part of our family, really will become a standard part of each mealtime.  and it breaks my heart a little that my little who is very interested in eating food, may not  be able to be sustained by it.
i have made goals for shilo and eating.  and even with this new word looming (we don't have an official diagnoses yet) i still will continue to do all that i can to try to help her learn to eat. i just wanted one thing, for shilo, to work for her instead of against her.  but, somehow, i know that with each new obstacle before her, we will continue to see new and amazing things with her.  we will learn over and over to celebrate the small victories that other people miss, and we will learn that God's grace is sufficient to get us through.