the hands that hold the world, are holding me.

we are officially here through open heart surgery.  we don't (and won't) have a date.  shilo has five more days of antibiotic.  after that is finished, whenever everything is ideal, they will do surgery.  so it's likely we will find out same day or only have a one day notice.  this is hard, but we also know it's best for shilo to have surgery when everything is at it's best.  and we want the best outcome possible so we are willing to roll with it.
i'm pretty emotional this weekend.  some of it is from being tired.  some of it is from five weeks of stressful circumstances.  and some of it is just from it being a weekend with my husband and daughter.  it always feels so bittersweet.  as saturday night creeps up i wonder if i stay up if maybe i can keep sunday from coming.  and then we can just always be together.
jason and i sat on the couch in a common area this evening while we were waiting on dinner at the rmh.  abigail dance joyfully to 'hosanna' closing her eyes, spinning, and raising her arms.  all i could think was 'God, i miss that girl.'  she is always so full of joy.  i know she doesn't understand everything.  but she is so matter of fact with it all.  'the doctor's are going to fix the boo boo on shilo's heart, and then they will take all the tubes out, and she can come home.'  it's simple in her sweet little head.
i find myself wishing for her simplicity and faith.  i wish i didn't know about co2 levels, acidosis, and picc lines.  i wish i could just easily accept that this is what needs to happen for shilo to get better and be done.
but i find myself back at 'why.'  i remember asking this over and over after abigail was diagnosed with nf.  and i remember truly finding peace and settling into the idea of 'because we live in a fallen world.'  my why now isn't quite the same.  it's different since we already knew about  things with shilo.  it's more of a why do i have to (re)learn the same things?  it seems like waiting on our first child for three years, and then her diagnoses, and adopting a second time, would all be chalked full of all the life lessons one could possibly need.
but alas, i return to my ways when things are comfortable.  i forget who hung the moon, and that it most definitely wasn't me.  i forget what it really means to love people.  and most importantly i forget what it means to trust my Papa.  because He is good.  He is worthy.  and He is way better at holding my life in His hands, than i am at controlling things myself.

so tonight, as abigail asked to sing psalm 122 to shilo, prayed, kissed her sister, and signed i love you to her, i had a moment.  once again, this time period in our life is definitely hard.  but God hand picked my two little girls to be our daughters.  He moved things in heaven and on earth so that they would come to be part of our family.   He knew that abigail would be the perfect big sister for shilo, as shilo would be the perfect little sister for abigail.  He knew that we were the best parents for these two girls (even on days when we fall way short).  and He knew we would spend this time period living separately, hurting, and figuring out (once again) who was holding us.

thankful to be in His hands,

something to make you laugh...

the hospital we are at is in the middle of a college campus.  tonight i decided to walk to the student center to get some chick-fil-a.  i set out feeling confident that i fit in with the rest of the college students walking around.  and then i heard a young woman make this statement,
'i bought this cool lighter that looks like jugs. i love how every time i light my bowl i get to pull out some jugs.'
my confidence left in that moment when i had the immediate thoughts: i am obviously an adult. i am obviously a mother.  do her parents know what their money is going towards.

conclusion: i do not fit in on a college campus. 

from this perspective....

parents are great at remembering special things in each of their children's lives.  some are great, like the 'first' of everything.  some are the hard moments of sickness and pain for your child.  and some are just memories that we latch onto because we know our children won't stay little forever.
there is one time, for each of my daughters, that sticks in my head as the moment i thought we might lose them.  abigail's was at birth when she coded. shilo's was a month ago.  they are both moments, that if i spend much time dwelling on them, still cause me anxiety.  but obviously both of my beautiful daughters are still here.  i can still hug them, love on them, and enjoy them.  i still get to make new (not so scary) memories with them, and watch them grow.
tonight, as i sat in my room (which is across from the nurses station) and watched the hussel and bussel of the room next door, my perspective of sitting in a little room for five weeks changed, and the sucky parts of it all sort of faded in the background.
the little boy in the room next door was transported from a different hospital.  when he got there the charge nurse, the floater, his nurse, a resident, the attending physician, a social worker, and a chaplain were all in his room with his parents and two sibling.  the doctor and social worker took the family in the 'quiet room' to talk to them.  i knew. he wasn't going to make it.  this family was preparing to tell their son goodbye.  it's not a close call.  it's not a scary moment when you think 'this might be it.' 
so i prayed for them, and i thanked God for my two littles: for scary only being a moment instead of a lifetime.  
from this perspective my past month doesn't look so bad.....

the truth.

so the thing about being where we are right now is that it's hard to describe the emotions of it.  yes it sucks that shilo is sick, and we can't hold her, and there is no end in sight.  it feels overwhelmingly depressing that the sights and sounds of a hospital are familiar to the point of comfort.  i don't react to the beeping alarms.  i can drown out the crying children in other rooms.  none of this seems that big to me at the moment.
the part that hurts is that i miss.  i miss my husband.  right now we would put our girlies to bed and then go sit on the steps together outside the door, listening to the white noise of the monitors, and talking about our days, and days to come. 
i miss our big girl and getting to do the day in and day out things that seem insignificant most of the time.  i miss candy land, and re-reading the same book over and over.  i miss playing outside, and making french toast together.  i miss her laugh.
i miss our family time.  our nightly walks through our neighborhood, saying hello to our friends as we walk the same loop that we have for seven years now.  i miss reading together at bedtime with the girls, and fighting over who is going to hold shilo when she wakes up.  i miss watching abigail lovingly force/teach shilo to sing baby shark, and seeing shilo smile about it despite the roughness of the interaction.  i miss watching abigail trying to teach shilo new signs.
and all these things are really hard.  but the thing that breaks my heart right now is how much i miss shilo.  i miss her cry.  i look at pictures of abigail at the same age and realize more and more that we are missing out on this whole big chunk of shilo's life right now.  she is growing as she lies in her bed, and i won't know what she felt like at nine pounds, because i never got to hold her when she was nine pounds.  i rarely see her eyes, and her smile is gone for the moment.
most of the things i miss while i'm here are memories that i will get to return to when we get out of this place.  but the part of shilo's life we are missing isn't able to be picked up where it's left off.  we don't just get to resume things and resettle like we will with lots of other things.  and it breaks my heart knowing that everyday, as i sit in a room with my baby, that i am missing part of her life.

update.

update:  they are attempting to extubate one more time before giving the go ahead with surgery.  ideally she would be bigger (and have a bigger heart) before they operate.  but if extubation fails, then we will be put on the schedule for surgery.  she has fluid around her lungs today as well so they will be putting in a chest tube to drain it this afternoon.


i did get to hold her for about 45 minutes yesterday.  this is the first time i have held her in a month.  it was SO nice to have the weight of her in my arms.  she desated and stayed in the 50-60 range so i don't know that it was great for her oxygen levels, but it was good for both of us none the less.  the chest tube will mean that we won't be able to hold her again until that is out (chest tubes are EXTREMELY painful).

surgeries.

so the word is open heart surgery next week some time.  we don't have a day yet.  but it means a couple of things. 
first, we have had an awesome and exciting past year.  since they have moved shilo's surgery up, when we hit the one year mark from abigail's tumor removal surgery last april, we will have had four surgeries, on two kids, in less than twelve months.
second it means that the vacation we were discussing as a possibility sometime after surgery will be happening some time this summer.  and the longer i'm here the more i dream about being somewhere, just the four of us, and enjoying life together.
so we are looking forward to being on the other side of the surgery and all getting to be home together, enjoying this amazing weather!

sunday.

shilo's still intubated, and hanging out in the picu.  i spent the weekend at home with abigail, and jason spent the weekend here.  i will maybe write more about that when my brain feels less mushy.  i have lots of really deep and profound thoughts lost somewhere in all of the medical information that's also jam-packed into my head.
but for now, i feel somewhat refreshed, and extremely thankful for the amazing friends and body of believers we are a part of.  oh, and i really like my three year old.  there's nothing to help you relax after three weeks in the hospital like a conversation about nipples, chest, and naming off each of her friends so i could correlate which mama breast-fed that particular friend.

home.

jason and i had been debating on trading places this weekend.  it was a hard thought because it meant that we wouldn't get any time together. i also was having a very hard time with the idea of leaving shilo, even in jason's extremely capable hands.
but after today, i think that going home for twenty four hours might be the best thing for me.  the morning started off with the hiccup of not being extubated, and ended with the highest co2 numbers i have seen, meaning that we won't be extubating tomorrow either.
i've made peace with the idea of doing surgery before we go home, i really just want to know at this point.  if we are here through surgery, then i'd like to get that in my head and figure things out.  if not, then let's figure that out.  but i have no answers.
and by tonight, i felt tired, bitter, and annoyed with everyone else in the world.  i worked hard to find the good things of the day, eating with my friend, seeing abigail, and even shilo smiling as she was drifting off to sleep, holding my hand.  but i still just feel done.
and so home might be a good place for a day.  playing with abigail, going to church, and seeing all my friends. (not that they haven't been making trips down here to see me). i'm looking forward to sleeping in my own bed for a night, as well as taking a long hot bath as well. 

still intubated.

no extubation today.  they changed her diuretics yesterday, and it didn't go well for her.  she has fluid around her lungs causing her saturations to be lower than wanted.  so instead, we will be going back to the old diuretic schedule, and getting another hemoglobin transfusion.  it should only be a small hiccup, but i am beyond disappointed.
however, my friend is coming down, with abigail, to eat lunch with me.  and it's 80 degrees.  so i'm going to go outside in a bit, and get some extra loving from my big girl to help turn this feeling of sorrow into at least a little bit of joy!

tomorrow.

shilo is rocking c-pap this afternoon.  this means that tomorrow, they will make an attempt to extubate my little peanut.  if it goes well we will get to go home before surgery (we still have more hurdles after that, like eating, but those seem minor at the moment).  if not we will be here through open heart surgery.
we are SO hopeful that it will go well.  and if it does you might not hear from me right away because i will be holding my little girl until my arms get so tired that it's impossible to hold her anymore. :)

living here.

i wake up.  i shower.  i walk to the hospital.  i listen to the doctors while they round on my daughter.  most days i participate with thoughts and opinions.  maybe they like me, maybe they don't, i'm not sure i care either way.  i get tired of their descriptions some days.  'shilo.  four month old.  trisomy 21. admitted due to being postivie for hmv and in respiratory distress...'  it goes on for five minutes or more.  they are doing their job.  i wish they would let me present her.  i don't have to continually look down at a paper to tell you her vent settings, her meds, and her doses.  but instead i interject when they fumble around and can't find something.  i would like it if they added things like, 'shilo can smile large full face smiles when she is well.  shilo loves her sister.  shilo loves to be held on her mama's shoulder and lightly patted on the back.'  but i know these things don't feel important to them, only to me.
so after rounds i sit here all day.  i talk to shilo sometimes, rub her head, sing her songs, and pray for her.  and then i go back to my chair and sit.  i watch her chest rise and fall rhythmically, and listen to the beeping that indicate her heart rate and oxygen saturation.  for about fifteen hours a day ( minus going to the bathroom and eating) i am here with her.
and at night, i walk downstairs and get a ride back to the rmh.  the guilt sets in before i step off the elevator that i'm leaving her for the night.  yes, she's sedated.  yes, i 'need to take care of myself,' but it doesn't change how horrible it feels to have to leave her every day.  sunday nights are particularly hard because i go back to the room to find hints of jason and abigail having been here all weekend.  and i often lay down and cry because i miss them, and shilo, and i feel so alone at that moment.
when living in a hospital with your child, it's easy to go one of two ways.  some people think they have the worst possible situation and sit around feeling sorry for themselves.  other people know that there are lots of children here with worse things going on and so they refuse to acknowledge that being here is hard.  but the truth lies somewhere in the middle.  it's fine for me to admit that this sucks, and it's hard.  i miss the other half of my family, my friends, my house, my bed, my life back home.  it's also good for me to know that there are tons of kiddos around me who aren't leaving this place alive.  yes, we have been here for a while, and yes we will continue to be here for a while longer, but we will get to go home.  and life will eventually return to our normal routine.
i would encourage you though, if you have a friend, a relative, someone you go to church with, or someone you barely know even, who has a child in the hospital, that your visits, your calls, your meals, your prayers, your gifts, will (and do) make a huge difference.  these are the things that have helped me through each day, and i know this is true for the other families i have talked to as well.

holding our breath, and hoping she doesn't

we have been living in the hospital for eighteen days now.  shilo has been intubated for most of that stay.  and we have an end in sight.  hopefully.
right now they are still slowly weaning the vent, and shilo is initiating most of her breaths on her own.  tomorrow we will be changed over to c-pap mode on the vent.  this means she will be doing all the breathing, but there will be pressure to help her some because she will still be breathing through the tube (think of breathing through a straw) in her throat.  if that goes well they will attempt to extubate tuesday.
this is the part where we sort of hold our breath.  if she does well, great.  we are probably still here for a bit as we work on learning to eat from a bottle again, but we can be moved to the floor, where i will have my own private bathroom, and shower.  i will be able to hold my little peanut again.  the nurses won't come in every two hours.  they won't be taking blood twice a day.  lots of great things about this.
if she doesn't do well, they will inubate her again, and we will be scheduling open heart surgery for now instead of later.  so far she is tolerating the  wean really well.  and most of me thinks she will do just fine.  but i would be lying if i said i completely believed it was going to go perfectly.
the other fun thing that comes into this, is that shilo has not had a bottle in the eighteen days she has been here.  she was a champion eater before.  and we hope this continues.  but it is also possible that without sucking for so long that we have lost that ability.  and then we would likely be here through a g-tube surgery.
so really there are lots of things up in the air, and we are watching, our breath still held, and hoping that things land well.  we don't need perfect, just mostly good will due.

on a much funner note, our peanut is four months old today.  weighing in at around nine pounds, and looking more and more like herself every day.  i would post a picture, but the camera isn't here with me at the moment.

upbeat.

so i thought to help counter some of the overwhelmingly sad post (which i think were fine to share) i would make a little list of how blessed and loved we feel right now.  you see, just a few days before we were admitted to riley, jason's pay went from hourly to salary.  he is still doing his best to get at least 40 hours in every week, but i can't begin to describe how much more breathing one can do when finances are still in order.
on top of that we have had so much gifted us since we have been here.  people are giving us gift cards and money (which are very helpful for gas, and meals for mama).  abigail has been given some books and matchbox cars.  we have been given snacks, bought meals, and had a large entourage of friends love on our big girl while jason is working.
i have had visitors to help pass the time, and keep me sane while i mostly sit in a hospital room for long hours every day.  i have a laptop here that i can use to communicate with others as well as watch netflix to help keep my spirits up.  i need to laugh, and this makes it possible. 
i can't even begin to list everything here that people are doing for us.  it's hard to put into words how thankful we feel.

so beyond that our update as of now is still technically 'stable.'  we have had some issues with low platelets and hemoglobin so shilo is receiving some blood transfusions today to help out with those.  the doctors decided to give her a few days of same vent settings because trying to wean her has been a disaster.  every.  time. 
so our big *thing* hanging over our head is heart surgery.  there isn't a magic age or weight that they do the av canal repair at.  they sort of play it be signs/symptoms with each kiddo.  shilo was on par for having hers done around june or july.
but sometimes, when unrepaired heart kiddos end up intubated, they become dependant.  and as a result heart surgery must take place before they can be extubated.  and while we are still somewhat hopeful that she will be able to come off the vent and we can go home and grow before surgery, her refusal to even allow the vent to be turned down is making it look more and more possible that we are here until after a heart surgery takes place.  and that isn't possible until she has been well for a few weeks.  and we've been here almost two weeks and she's still not well.  so you can figure out the math on your own.
we have been hesitant to put this out there because we are trying to live in a place of hope.  however, we would really love for people to join us in praying that she will get stronger and be able to be extubated so she can go home and grow before surgery.  this would be best for her.

another day.

right now there are small white flakes falling outside the window.  they sparkle against the sunshine, and make it feel like the world is a beautiful place.  but the constant beeping brings me back to reality.  the balance of finding the good things in each day to mingle with the reality of my three month old sedated and hooked to twenty different wires.
overall we seem to be headed in the right direction.  the worst is passed.  the lung x-rays are showing improvement.  she is finally flushing out all of the extra water she was retaining, and having bowel movements again.  she is tolerating feeds, and even being able to have them increased and her tpn (nutrition given through your veins) decreased. 
but that vent.  that damn vent.  everyday they say, 'let's try to wean.  be as aggressive as she will handle.'  and the next day her settings are back to where they were the day before if not a little higher.  i cried when the little boy next door, who had been here, and intubated, for just under 48 hours, was extuabted.  i can hear him crying next door, and my heart aches a jealous ache.  i want my baby to make that sort of turn around.
jason and abigail came to spend the weekend with us.  we have a room at the ronald mcdonald house until we are discharged.  it was nice to get to be together.  we even took abigial to the children's museum for a few hours so that she was able to do something enjoyable.  they were only here for the weekend though, and when they left i cried.  and abigail cried.  and jason just told her it was okay to cry.  he didn't try to quiet her.  he didn't apologize to people staring.  he told her that crying was acceptable because this is hard, and we all miss each other, and we are all sad.  i am thankful for a husband who doesn't want abigail, or me to pretend away our feelings, nor does he hide his own. 
so we are here.  indefinitely for now.  trying to make certain to find things to laugh and smile about.  trying not to become jaded when people complain about things that feel very trivial for us right now.  and doing our best to walk this out with the help of friends, and stranger, who have stepped up in every area we could imagine to love on us.

one week.

today we have been in this room, in the picu, for one week.  my things have accumulated in one corner of the room, where i am living out of bags in the most organized way i possibly can.  i know the doctors and nurses names, and we have developed a repoire.  i recognize the other parents who are living here.  i have accepted this as my home for a time.
shilo has mostly been stable for a few days now.  her sats and temps jump around, but they are easily restored to where they should be.  yesterday she started holding my finger again.  tears ran down my face as her little hand wrapped around my finger.  i want to scoop her up and make it all better.  i want to tell the doctors and nurses that she really just needs her mama.  but instead i organize and reorganize our room.  it's the only thing in my life i feel like i have control over at the moment. 
we will have a surgery consult today.  shilo has not had a bowel movement in a few days, and bile has begun to come up through her ng tube.  this points to a blockage.  she has been given suppositories, laxitives, and enemas with absolutely no results.  her little belly is so swollen it's pushing up on her diaphragm and causing it to be harder for her to take good breaths.  they had to increase the pressure on her vent as a result, to help her lungs inflate better.  some people with Ds have something called hirschsprung's disease.  the belly issues could point to that so we will be doing some investigations.
she is still pretty swollen, although for the first time in days she is peeing out as much as she's taking in.  her weight upon admittance was 8 pounds 8 ounces.  yesterday she weighed 11 pounds.  it's all water and stool.  i don't even know how to begin to describe how swollen she looks.
as hard as this all is, i have been overwhelmed, in an amazing way, with the people surrounding us.  we have tons of friends back home who are stepping in and taking turns caring for abigail while jason is at work.  i have had enough visitors to help keep me sane amidst all the beeping.  i was given a kindle to use while here.  i have been gifted snacks, gift cards, and meals.  magazines, books, and things to create with.  i have been sent messages of prayers, kind words, and encouragement.  these things make it possible to sit here day in and day out, and hang on to hope.  they let me know that jason, abigail, and i aren't the only ones crying out to God for our sweet girly.
so thank you to all of you.  please don't stop praying for our little peanut. 

a few decorations (i've added more flowers to the head of the bed), a picture to let the doctors know who she relly is, and a sweet little girl in there.