what we have been up to.

let's start by being really honest.  i. am. exhausted.  not even the kind where getting a few more minutes of sleep, or squeezing in a nap would make me feel refreshed.  a very (very, extremely, highly) energetic three year old, an almost seven month old who's skill level is closer to one month (if i had to guess), middle of the night feedings, sleepwalking (by energetic girl), appointments, and a house that is somehow is incapable of cleaning itself, or at very least doing the laundry, and my days have me feeling ragged.  even with all that though, it's still SO much better to be at home.
shilo is still doing really well.  some of her meds are being decreased, and so we were able to drop the 5 a.m. feeding.  so papa and mama take turns getting up at 2, and getting a little bit more sleep at  night time.  the med decreases some days make for a very fussy girl, but overall she is content as could be.  and did i mention she sleeps well at night time?  lay her down at 8, give her a blankie, and within minutes of her rubbing her face with it she is out until 8 the next morning (she sleeps through us hooking her to her feeds).
abigail still prays multiple times a day, thanking Jesus that mama and shilo are home, and we are all a family.  she has enjoyed getting to just hang out at home most days, but also some fun daytime activities we have all done.  she is loving all over her sister, always wanting to hold her, and make certain none of her tubes are doing anything they shouldn't be. (oh so helpful).
since coming home shilo has gotten to enjoy her first trip to the local farmer's market, two concerts (one was a benefit concert for our family, more on that in a minute) a trip to the local garden's type place where we saw tadpoles, fish, frogs, turtles, and so many beautiful flowers and plants, and our daily walks through the neighborhood.
the benefit one was sort of a 'hey somebody wants to do this are you okay with it?' thing.  we were like sure.  and we thought for a while about what we would do with whatever we got.  we have decided to try to find some adaptive toys for shilo since she can't hear.  i never thought about it until she came along, but almost every baby toy out there attempts to get your attention by making a noise.  if you touch it, it rattles.  if you push a button it plays a song.  well, if you are deaf, this doesn't make one difference to you.  so you have to find other ways of 'rewarding' the touching of a button.  i have a friend who has a daughter who is both blind and deaf, and has been a great resource for how to go about getting things that would be beneficial to shilo.
and as for the concerts with a deaf little, she can feel the vibrations from the music.  the second concert was a symphony on the green at the local college.  we layed shilo on a blanket and she loved it (she cried when the music was over).  our family is one that greatly enjoys music.  it brought my heart much joy to know that shilo was enjoying the music as well.
our only bigger upcoming thing is that we will be going back for a 24-48 hour hospital stay for shilo to get a g-tube placed as well as ear tubes (they will also be doing a test during the stay to see if we could turn her o2 down or off).
so that's life as of now.  i'm so glad that it's summer and we can all be doing more outside.  we are planning a trip to the local (free) splashpark this week as well.  and for now, my house is a wreck, dishes need done, but i'm going to sit because both girls are napping at the same time, and i need a break. :) 

sassy pants eating popcorn with her papa

little hanging out on papa's lap

she thinks she needs to make faces every time i take a picture now.  but she  looked beautiful all dressed up for symphony on the green.

i kid you not, this is really what shilo's lip does when she is sad.

enjoying symphony on the green

the three girls in front of frog baby.

home.

i haven't updated again for a while.  sorry to leave you all hanging.  i've been kind of busy though.  i've been playing candy land, and the sock monkey game, reading books, going for walks, and playing at the park.  i've been watching sisters with their secret smirks that speak a language only understood by them.  i've been snuggling littles and bigs at the same time, all day, everyday.
and at the end of the night, when they are both tucked in, i've been sitting on the porch with my husband.  sharing our day; laughing at things abigail has said or done, wondering at the blessing of two little girls, and sharing life.
yes.  we are home.  we got home monday evening around five.  i have intentionally neglected spending any time on the computer because i had much bigger and better things to be doing.
shilo is doing great.  and like jason and i assumed, we fell right back into life without much thought to it.  while we by no means love hospitals or doctors appointments, we are learning that God has created the two of us in a way where we seem to handle the craziness of life without feeling like it was a huge deal.
and i won't say this has been suggested, or that it hasn't, but in NO way, shape, nor form do we regret our second daughter.  we DO NOT feel like we got more than we bargained for.  we DO NOT feel like it was unfair.  she is our daughter.  we love her with a fierce love.  she got sick.  and when your child is sick you do whatever you are able to, in order to care for them.

pain.

not long before shilo was admitted i came across a place to enter an essay to be considered for addition to a book.  the essay was to be about one word that comes to mind with adoption.  i was unable to write because we were admitted to the hospital, but i have thought about my one word over and over again.  i go back and forth on wanting to put it out there for fear that people won't understand what i mean, but certainly there are other families that feel the same way.  so here it is.

eleven times in the past three years i have handed my daughters off to someone else who was much more capable of caring for them at that moment than i was.  i have no idea how to administer anaesthesia.  i don't know how to run an mri machine.  i am most definitely incapable of performing any sort of surgery.  every time i hand them off i cry.  and every time the people who take them assure me they will take good care of them.  i have no doubt of that.  it's just that trusting someone else with your child's life is painful.  and adoption is born of this same essence.
adoption is something that if i had one word to sum it up, it would be 'pain.'  (most) people adopt after experiencing the pain of not being able to conceive children.  even though we are very much at peace with having every one of our children come through adoption, there is still something painful about not being able to create life like so many other people around us.
for a birth parent, the knowledge that raising their child, would be best done by someone else, causes great amounts of pain.  it's beautiful.  it's selfless.  it's painful.  society can judge, they can question. but they can not erase the image i have of both of my daughter's mothers, with tears running down their cheeks as they walked away from their little girls.  and one of my little girls has a birth dad who's heart was also ripped out with making this choice.
and for my big girl (and likely some day my little as well), there are questions, thoughts, conversations, that rip my heart apart as i watch the pain seeping out of her.  lots of adoptees come to terms with the fact that being placed for adoption was done in love.  but it doesn't take away the pain that for some reason their first family was unable to raise them.
but the thing with pain, is that our God, He loves to redeem.  He often will pick up the ashes and make something more beautiful than you could ever imagine.  He does not waste the suffering and pain that come with adoption.
as a result of the pain of not being able to conceive, we have two of the most amazing little girls.  i could not have envisioned the beauty that would radiate from my daughters.  they bring about a kind of joy that starts in your toes, and moves up quickly, making every part of you feel like it will burst.
as a result of placing their children with us, our daughter's birth families have been able to make great choices, and change their lives so that they are able to still be an important part abigail and shilo's lives.  going back to college, getting new jobs, becoming more stable.  even making choices to live for, and follow Christ.
and as a result of adoption both of my daughter's (despite our parenting deficiencies) will understand the way Christ adopted us much better than i ever will.  they will be able to directly relate how adoption means belonging, just the way you are, to a family that loves you. 
yes, adoption is pain.  and it is out of that pain and brokenness that we often can find beauty.

shilo has something to say.

i'm not sure if i've ever posted this on here, or only on my facebook, but shilo has some pretty extreme hearing loss (we still are in the inner workings of figuring it all out).  as a result she has never really 'babbled.'  and although most babies who are deaf do babble, it's usually much later than hearing infants.  so we have been more than happy over the last few days as sweet miss has started to share some 'thoughts' with us.

aww shucks.

thanks to my amazing husband for the tribute he wrote to me while he was sleeping on the hard couch/bed at the hospital this past weekend, which brings me to our update...

we are OUT OF THE ICU!!!!  yes, i was yelling that.  we moved to the heart center on friday.  we have a nice little room with a bathroom and shower in it.  i had been sharing a public bathroom and shower (even at the ronald mcdonald house they are shared) for eleven weeks. 
shilo is doing amazing.  most of her medicines have been moved to oral (actually through her ng tube).  they will start trying to wean her oxygen down tomorrow (she's on 2 liters right now, but her sats have been 100 consistently).  she got to try a bottle today for the first time in almost 12 weeks.  she doesn't remember how to suck, but gave it a go none the less.  the speech therapist seems to think she will get it.  she just has to remember what to do with her tongue, and then coordinate the swallowing/breathing part.
the hardest part of right now is the continued wean of narcotics.  she was on diuladid and versed drips the whole time she was sedated.  and the combination of the trisomy 21 (people with t21 tend to metabolize sedation meds differently, and therefore have a much higher tolerance to much higher doses) with the fact she was on them so long that they just had to keep increasing them every time she became used to them, meant high doses.  so they are weaning her with methadone and ativan.   every couple of days they decrease one of the meds.  and then she spends lots of time that day crying, agitated, and sweating in ways i've never seen anyone sweat before, and often it's a cold sweat.  it's one of the hardest things to watch as her mama.  she is sometimes comforted by me holding her with her head sort of hidden in the crease between my arm and torso.  and sometimes, holding her, putting her down, rocking, swinging, and anything else you could imagine all just make her more irritable.
we still don't have a release date or projected time line.  whenever they make changes they talk about it needing to be what we can maintain at home, but i refuse to ask for fear of disappointment.  instead, i live knowing we are well past the halfway point, and we are moving closer everyday.

our prayers request for right now are: shilo's narcotic wean, eating by mouth again, and oxygen wean.  also, abigail has been having some weird night time issues.  she says she isn't having nightmares, and that she's not scared, and so we are at a loss for what is causing the issues.  so please pray for her to have peace and comforting dreams.

i will try to update again soon, but honestly, i don't have tons of down time, and i don't get tons of sleep.  so just know that no news means that we are still doing well.

Mama's Day

I am blessed.  So are our daughters.  Andrea is hands down the best mama for these two girls.  I've never met anyone more comfortable in their own skin as a mama than her.  The desire to be a mama had been a part of who she was since childhood.  All along, it's all she wanted to do.  That seems incredibly noble to me.  We  might be able to get away with fewer astronauts, doctors, engineers, teachers, etc.  We will not be able to get away with fewer mothers.  We can never have the former without the latter.


I don't remember much about preparing for Abigail's arrival (or what I did during the long wait), but I do remember the amount of time Andrea poured over our modest nursery, the clothes, diapers, books, etc.  I remember her just sitting in that room, praying and singing and crying...sometimes for hours.  She didn't feel complete.  By the time Abigail came along, she had read numerous books and articles and had several conversations with friends about parenting.  I didn't do much of that.  So when Abigail arrived, she hit the ground running with complete confidence.  It made it easier for me to come alongside and feel like I knew what I was doing when I largely did not.  Andrea makes me a better papa.  


Then all the medical issues started mounting for Abigail.  Andrea could have thrown her hands up and asked, "why me, why us, why Abigail, why now?"  Instead, she immersed herself in medical journals and forums and became Abigail's strongest advocate for care.  I'm still highly ignorant when it comes to all the intricacies of NF (and now Down Syndrome with Shilo).  Andrea is not.  Far from it.  As with Abigail, Andrea has jumped head first into the medical realm for Shilo.  She knows more about the heart, lungs, sedation meds, and diuretics than most early med students probably do.  She can talk the talk with the doctors and help plan out Shilo's course of care because she knows Shilo better than ANYONE (and the same goes for Abigail and her unique issues and countless doctors).  Even being apart from her for almost three months now, Andrea still knows Abigail better than I do in all areas.  She doesn't learn all of the medical stuff because she has to, but because she wants to know that they are getting the best care possible. 


She weeps for our girls because of the fallen nature of the world, and the brokeness of their bodies.  She weeps for the two women who selflessly chose us to be parents.  Her love overflows for each of our daughters in an inspiring way.  When we decided we were ready to add to our family this past year, things progressed very quickly and Shilo was born within three weeks of our homestudy...in another state.  We shuffled things so we could go be with her, knowing she had a heart condition that is fairly common in Down Syndrome, and would need surgery within days.  Things were a little tricky with the interstate adoption timeline, so Andrea stayed in Kentucky with Shilo until the courts cleared it.  The last 5 days of their stay, she had both girls at a friend's family's house while they were on vacation.  She was exhausted and lonely, but amazing, and created to do it.  Now, the last 11 1/2 weeks have been spent here in the ICU for Shilo, and Andrea has been here the whole time...and the only other place she'd rather be is home, with all four of us together.  Even being away from Abigail during the week, she is still a better-than-great mama for her.  She skypes some, talks on the phone often, gives 'kissing hands' when departing each Sunday, and spends LOTS of time having fun together on weekends.  She is so good at affirmation and encouragement.  She's great at being patient and teaching Abigail (and soon Shilo) all sorts of skills they will need their whole life.  Andrea's amazing at enjoying all the little moments of joy and just having fun in the moment.  She makes their lives better.
  
The more I think about how thankful I am Andrea is their mama, I am realizing just how different she is from me.  I guess I am most thankful for that.


Happy Mama's Day Andrea!

children shouldn't die.

i've always been a optimist of sorts.  i can spew rainbows and sunshine on most situations.  jason is not.  and at some point after being here for a while the rainbows and sunshine were gone.  my text messages contained explicit language about how everything seems to be going wrong.  and jason would respond with words of comfort and encouragement.  i was both thankful and very annoyed at the same time.
i hit a breaking point around the six week mark, and things have only gotten better from there.  i am seeing a little more clearly.  we are making progress.  it's looking like there is a possibility of one day going home (no we don't know when, or even have a projection of possibility).
shilo is on a nasal canula, has all of her extra lines and tubes out, leaving her with only her picc line, ng tube, oxygen, and the little monitoring probes.  i can hold her as often as i want. i can dance with her again, singing songs over her (even if she can't hear them) and watching her content smiles as she sleeps in my arms.  she still has a few more hurdles to get out of the icu, and then we will be in the heart center for a little bit as well.
but there's this really ugly side to being in the icu.  most of the kids here are critical.  in the span of the 11 weeks of being here, there have been four children that i have been in the vicinity of that have passed away.  i have heard the families grieving, watched people filing in and out to say goodbyes.  and it has messed with my emotions.  and right now, the children on both sides of our room are not going to live.  in no way i'm i trying to say that hearing all of this is somehow harder for me than for their families.  however, each day i sit here, my heart and soul cry out that it can't handle much more.  i know we live in a fallen and imperfect world.  and i know that daily, all around the world, children die.  but the more i experience it, the more i want to proclaim loudly 'children shouldn't die.'
the declaration would be one that should have the back up of being a word that is spoken and it is so.  children shouldn't get cancer, they shouldn't be so distraught about life that they take their own life, they shouldn't need heart surgeries, or brain surgeries, nor should they ever, ever, be abused.

after being here for so long, many people keep telling me i would be a great in the medical field.  and while there may be some truth to that, there is no way i could work here week in, and week out, and not be crushed with the pain that surrounds me. so tonight, i pray for the families here, and all around the world saying their goodbyes to the beautiful little people who should have much more life ahead. and i loudly say thank you Lord for the two littles we have.  they have experienced more than children should have to, but they are here.  and i can hold them, and kiss them.  and that is so much more than some families have.