the little things you will miss.

yesterday and last night were stable.  the drip of sedative seems to be working nicely to keep shilo comfortable.  it's nice to not see her fighting the respirator, or having ten people rushing into your room all of a sudden.  she is still extremely swollen and so they are working with changing the diuretics she is taking.  overall though, we are just in the waiting mode for her to start getting better.
it's funny though, how living in a hospital quickly changes some perspectives.  there's a baby somewhere else in the icu who is crying and crying.  it makes me sad: not because the baby is crying, but because i want to hear my baby cry again.  i want to be able to change her diaper, give her a bath, and kiss her until she starts wiggling her head around in annoyance.  i want to see her sweet smile light up her whole face and tug on my heart strings.  but more than anything, my arms just feel so empty.  i want the weight of her resting on my chest as she breathes steadily with the occasional sleepy sigh.  even though i am here with her, i miss her greatly.  she isn't herself.
jason and abigail got to come up today because abigail had a pulmanologist appointment.  we spent a few hours today and had a tearful goodbye as they headed for home, and i found my chair in the corner.  abigail hugged me a hundred times and told me she wanted me to come home.  she did really well with seeing shilo hooked to so many machines.  we tried to explain it the best we could.  and maybe some people would criticize us for bringing her here.  the thing is though, that we are going to be here for a while, and she misses her sister.  so we think the benefit of getting to see her far outweighs anything else.
i also, for the first night, will be heading down to sleep in the ronald mcdonald house to sleep tonight, leaving my little peanut all alone.  i think i need the sleep, but still feel pretty guilty about it all.  so i can validate one night of sleep, i think.

please just keep praying for shilo, for mama and papa, and for abigail.  we can't wait to be together again, with a healthy little peanut.

oh my.

sooooo....it has been anything but boring around here the last few days.  by the way, i LIKE boring.  miss shilo has continue to desat as sedation meds wear off.  i have continued to ask why we can't be on a drop so she is getting the meds all the time instead of letting them wear off.  last night won 'the scariest moment i have ever experienced' award, and mama being a LOT more assertive at rounds this morning.
shilo is extremely positive right now (taking in much more liquid than she is peeing out).  she is swollen.  last night though, she was swollen beyond recognition.  at 2:30 i roused to the nurse in the room, and then all the alarms and bells started sounding.  i sleepily sat up and tried to focus at the screen.  the sat numbers were dropping, but not anything i hadn't seen before.  until they hit single digits.  she was blue/grey, swollen, and surrounded by nurses, doctors, and respiratory therapist trying to bring her out of it.  it took nearly two hours to stabilize her.  mama really thought that she might lose her little peanut.
so at rounds this morning i said please move her from meds every four hours that are wearing off and causing her to have scary episodes to a continuous drip.  they did.  and since then she has been sleepy enough that even when the nurse does vitals her sats haven't dropped at all.  the nurse was even able to wipe off her face without her so much as noticing.
we seem to really be at our worse right now, the virus being exacerbated by the aspiration of vomit when intubated.  really, it can only get better from here.  and that is what we are going to believe and pray for now. 
in the mean time, mama hasn't had lots to do.  so i made some bows with a friend who also has a little girl here, and have been enjoying some cuteness on my little instead of just tubes and wires everywhere.

last night (notice the swollen eyes)

this morning (still swollen, but much better) with some awesome hair!

thanks all for loving us and sending such amazing and good thoughts.  please keep praying for our little.  i miss her.

our new home.

so my little had quite the exciting day yesterday. she was intubated. and apparently, while being intubated she vomited and aspirated some of it. she was fighting the tube in her throat, even with lots of sedation meds, and desated enough that she had to be bagged and helped to breathe four times. the last time was uber scary as her saturations hit the 20s and she was having a very hard time recovering.
we had a MUCH better night last night, and mama even got a few hours of sleep in there. they are still playing with the sedation meds because when one wears off she starts the fight again. it is possible if she continues that they will give her something to paralyze her so that she can't fight. that little has some spirit in her.
we are here for *a while* whatever that means. i have heard 'at least two weeks' and have just decided to settle in and be okay for now. i have a few pictures of shilo that i'm going to put under this. if you have a hard time seeing littles with tubes and not looking great i wanted to prepare you.

so many tubes and cords.

and still that awesome mohawk hair.

and so we danced.

Last Friday, Abigail had been running a fever for a few days, wasn't eating as much, and had a cough and runny nose.  I thought it was viral.  I also knew that a Friday meant I went to the doctor then, or to the e.r. if things changed over the weekend.  So we went to the doctor.  Friday night her temp hit 106.  She likes to spike them high.  And she continued to run at about 102 all weekend.  Monday brought about a fever less little girl.  Just a virus.  She has a lingering cough, but only required a few extra breathing treatments and some extra snuggles.The issue with a virus though, is that if you have a heart defect, and pulmonary hypertension, a respiratory virus means much worse things.  So when Shilo started coughing, Tuesday, we checked her temperature obsessively.  She still was happy and alert.  She was eating.  Wednesday her eating dropped off so we put the ng tube back in.  Thursday morning she started working a little harder to breathe so we made an appointment with our family doctor.  By the time we saw her, Shilo was going down hill quickly.  They called ahead so that Riley's e.r. would be ready to admit her.  So yes, here we are, in Riley.  Mama has the virus as well, but, thankfully, for an adult, it is just a cold.  No fever, just a runny nose, and a cough. 
Since when we were here in December, Shilo decided to post the highest tsh level anyone here had ever seen (that is causing two doctors to team up and attempt to make a federal law that tsh levels must be checked at birth by all states: this is a long story with lots of explanations so moving on), I hoped that maybe she wouldn't be quite the attention seeker this time.  I knew, though, that day 3-5 of the virus it tends to reach its peak.  So yesterday she spent a lot of the day uncomfortable.  Mama was all she wanted.  I help her upright on my shoulder, and patted, and patted, and patted.  The nurse kept telling me she was 'spoiled.'  I kindly ignored her.  They finally came and turned her o2 back up and she settled in to rest a little more comfortably.  For a bit.  All night long it was up and down.  Snuggle, pat, love, rest for a bit.  Then the nurse would come in to check her blood pressure, and we would start all over again.  At three we were up for about an hour and a half.  I stood with her patting, and swaying.  I turned on my 'Shilo' list on Grooveshark and sang softly as we danced.  I was beyond tired.  My body ached.  And I was loving this moment of her resting comfortably on my shoulder while we danced.  Slowly, tenderly, and with an intimacy that only a Mama and her daughter share, we danced.  I closed my eyes tightly and kept saying to myself, 'I choose joy.'
Things only got worse from there.  She had to be intubated this morning.  It didn't go well.  They had to do chest compressions on her because her heart rate dropped too low to pump blood throughout her little body.  She is laying in her bed sedated and breathing through a tube.  I can't hold her.  I've spent the day doing the snotty awkward cry.
But if I close my eyes and lean back, I can still feel the weight of her little body on my left shoulder.  I can feel the tiredness in my arm from patting, and patting, and patting, and patting to keep her happy.  And I can feel the joy of the hour and a half that we danced in the PICU together.  Just Mama and her youngest daughter.
We are by no means out of any sort of woods yet.  All we have at this point is our prayers, and your prayers, and our God to be able to heal her.  Virus don't go away with medicine.  They have to run their course.  So please join us in praying that Shilo would recover quickly.  I want to dance again.

no longer mine.

Elizabeth Stone says, 'Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.'  I have always thought this was a little cheesy, even if it is true. 

Over the last three and a half months I have fallen more and more in love with a sweet little girl.  I knew before we said yes to being her Mama and Papa, that her heart was broken, and I knew that some day it would need fixed.  I was able to tell myself that I was strong.  I could handle whatever came, whether the outcome of the surgery was great, or if Shilo went to be with Jesus, I would walk through it and remain strong. 
The truth of the matter was, I only gave Shilo most of my heart.  I knew, just like it did with Abigail, that there would come a day where I would realize that I no longer held onto that last piece.  That I had fallen head over heals, madly, deeply, and with reckless abandon, for a little girl.  With Abigail, somewhere in the midst of her being diagnosed with NF, and wrestling through the reality that life holds no guarantees, I felt it.  My heart.  It was missing.  Whenever I watched my daughter dance, or laugh, or cry in pain, I could feel it.  She was my heart.  The joy, the pain, it was all being lived outside of myself. 
Some part of me thought that maybe I could hold some small part of my heart until after Shilo had open heart surgery.  That if I fought really hard, I wouldn't feel as much pain if things didn't go well.  I sat holding Shilo though, and she smiled, wide, toothless, eyes squinted, whole face wrinkled up, smiled.  At me.  And I began to cry.  Abigail's taking my heart seemed like a gradual thing.  Shilo's was within a moment.  My heart.  It had now been split between two little girls. 
And like with so many days after Abigail's diagnoses, I spent the day split between being heartbroken by the fact that we live in a fallen world, where children have disorders, and need open heart surgery; and being thankful that there is hope.  One day all things will be made new.  My girls will have new bodies.  Bodies that don't have genetic mutations.  Bodies that aren't in pain, and aren't breaking.  One day my children will have no scars from surgeries. 
For now though, I will live with my heart outside of my body.  I will experience pain and joy in ways I never knew were possible.  And my children, despite my resistance, will havem all of my heart.

A few of my favorite things...

Once you become a parent, you quickly realize things make your life easier, and what things feel more like propaganda (usually after the fact though).  So I thought I would share a few of our favorites with you.

This is a sling.  I have used one with both of my girls.  Neither Jason, nor I, are huge fans of the removable car seats.  They always seem so bulky and awkward to me, on top of the fact that they tend to cause me back pain.  I also like the car seats we have used with Abigail and Shilo because they can be used from birth (rear-facing) until they move into a booster seat.  But in all honesty, I like holding my babies.  There's nothing better than feeling them against you as they sleep, and hearing all the sweet little noises they make as they sigh.  I don't really wear this around the house, but doctors appointments, shopping, church, you name it, and you can find Shilo in it snuggled up against me.  The other great thing about it is that it's extremely versatile. When Abigail was little she liked to lay in it.  Shilo likes to be up and down with her legs all curled in.  I can still wear Abigail on my hip in it if I need to, or on my back.  It's an item that has gotten more use than I would have ever imagined.  I made mine, but you can find them by googling 'ring sling.'

The Alpha Omega car seat.  It is rear facing from 5-35 lbs.  A five point harness forward facing car seat.  And the harness can be taken out to make it a belt positioning booster seat with a back on it.  I am passionate about car seat safety, and trying to do what is the very safest for my children.  This car seat meats that requirement, saves money since we are buying one instead of four, and is SO easy to adjust the shoulder height, tighten/loosen the belt, and lean it back a little for long car trips so if by some crazy chance, Abigail falls asleep, her head isn't bobbled forward.

Bum Genius 4.0 diapers with snaps (we have had Velcro, but definitely prefer the snaps).  These diapers can be used from about seven pounds all the way through potty training.  They adjust to fit length, and around the waist.  The snaps make it impossible for littles to pull them off.  They are super easy to wash, dry, and put back together.  They have saved us TONS of money (perhaps you will pick up on this theme throughout this post).  And best of all, with all the fun colors and designs, they are super cute, like way cuter than any disposable diapers I have ever seen.  We are on our second kiddo with ours, and our affinity for them has only grown.

To go along with the diapers, are these wipes.  I know lots of people make their own cloth wipes, or use regular wash rags.  I registered for wipes with Abigail because they were cute.  I am not sorry.  These wipes are much softer than a regular wash rag, large enough to only use one per a change, and thick.  We ended up buying a few more after we already had some because we loved them so very much.  They are called 'Thirsties Fab Cloth Wipes.'

I know these are sort of hard to see, but these are Aden+Anais brand Muslin blankets.  We love swaddling, and these blankets have all the perfect properties for swaddling blankets.  They are large enough to use for quite some time.  They are thin enough to not overheat baby (although they have thicker for people who want that).  Plus, added bonus, they come in some super cute designs!!

If you use bottles at all, a bottle brush is amazing.  You can get a basic one where the small end pulls out a smaller brush perfect for getting inside of nipples.  You can find a basic one at any box store for a couple of dollars.  This has made my washing of countless bottles much faster than a regular wash rag.

A forehead thermometer.  I could seriously kiss who ever came up with this.  You turn it on, put it up to the child's forehead, push a button, move it from the top of their forehead down to the side, and it gives you their temperature.  You can take it while they are sleeping without waking them at all.  We first saw one of these when Abigail had her tumor removal surgery in Chicago.  The hospital there used them, and so I came home and began searching.  There is a huge variance in price range, but we purchased the Vick's brand one for thirty dollars at Wal-Mart.  With a three year old who runs extremely high temps. really easily, this has been well worth the investment, and much more accurate than the armpit!

I saved my very favorite for last.  My handsome husband (who is a wee bit blurry here, Mama's not great with the new camera yet), and my two beautiful daughters.  You can't find them online or in a store, and I'm not even that great at sharing them.  However, they all three enrich my life in more ways than I could put into words, and are irreplaceable and invaluable in making me who I am.

Rock stars.

In case you didn't know it, I have really amazing children.  Daily I am blown away by how intelligent they are, and how blessed I am to be their Mama.  Plus, added bonus, they are both super cute.

So this picture is Shilo being her rock star self.  Do you see how high that head is up off the floor.  This, my friends, is quite amazing for a little girl who has faced the challenges that she has in the first twelve weeks of her life.  But she's not letting that hold her back.  She working on head control, trying to roll over, and batting at toys.  She wants the world to know that nothings going to hold her down. 

I feel like I captured this little bug pretty well in this picture.  She was telling a story here, and at this moment said, 'it was cracking me up.'  I was having a hard time holding the camera steady.  Her personality is as big as life, and she is already determined to start teaching Shilo (she will learn sign language quickly if Abigail has anything to do with it).  Right now she is very into maps and geography.  She can identify nearly all fifty states (although if I try to capture it on camera, or show grandma on skype she won't do it).  I also just found an Usborne book called 'Children's Picture Atlas' at the Goodwill.  She is loving reading it, talking about the maps, and just sitting and looking through it.  Today she curled up next to me and showed me Europe and Asia. 

I am truly in awe of how amazing my two daughters are.  They throw away all the labels they have been given, and prove that investing in your children in whatever way possible can have some amazing results.  Way to go my two rock star girls!

Adjusting.

It's been a little while since I have written anything.  Right now I am stealing a few minutes just to give you some small update on life.  Abigail is preoccupied at the moment, 'making me eggs,' and Shilo is sleeping.  So I will type quickly because those are both things that could change at any second.
We are finally getting into a groove here.  We are figuring out what works for both of the adults, and keeps the children happy and healthy.  Our days are pretty predictable, but they are full.  Miss Shilo has decided that Mama is the only person worthy of taking a bottle from.  Mama is flattered, really, but tired, and okay with Papa feeding her sometimes.  What it came down to, though, was that we could be NG tube free if I did all the feedings.  We would have to leave it in if Jason did any of the feedings.  While an NG tube isn't a huge deal, they can cause irritation.  So I 'took one for the team' and we have been tube free for a couple of weeks now. 
Our days generally start right around eight with Abigail and Shilo both eating and taking their morning meds.  Shilo plays afterwards doing some sort of strengthening exercises (tummy time, focusing/tracking, head control, rolling over, bouncing-core strengthening/awareness, and on and on).  I usually give her a little bit of time just laying and looking at herself in the mirror on her mat as well.  She's pretty fond of herself, and frankly, who can blame her?  The girl is cute!

In the last week she has also developed an affinity for sleeping only in her bed (as opposed to the bouncy seat or on me from time to time).  So at around 9:15-9:30 every morning she begins to get sleepy.  I swaddle her, rock her for a few minutes, lay her down (awake) and that's all she wrote.  I thought after my first daughter was so easy to get to sleep that I might not be so blessed the second time around.

I spend the next bit of time playing with Abigail, starting laundry, doing dishes, and so on.  A little before eleven I start Abigail on some sort of  project (painting, coloring, making valentine's, stringing beads), and get ready to feed Shilo again.  After her eleven we do some more playing, and I get lunch ready.  Shilo's big awake period is in here so she usually spends some time focusing on black paper attached to our white freezer, and being loved on by her sister while I prepare the big girls lunches.  We eat, and play some more.  Shilo goes down for a little nap.  Abigail goes down for her nap a little before two, I feed Shilo again at two, and the goal here is to get her to go back down as soon as possible after this.  Since her big awake time is not long before this, she usually does, but sometimes she's awake for some part of this.  However, between 2-4 I get some sort of  'down time' in which I might nap, work out, shower, or work on more projects for Abigail's next few days.  Jason gets home around four, and I jump up and down, elated to have the Papa home.  Abigail gets up right around here.  Shilo eats again at five, and spends time awake and playing, but is ready for bed for the night around six.  We usually eat dinner around this time (lots of crock pot meals that are made during that morning time or while I'm preparing lunch).  Then spend time hanging out until bedtime.  Around 7:30 we feed Shilo again (we do what's called cluster feedings around bedtime so her belly is very full and she can get a good night sleep) and do Abigail's nighttime meds and nebulizer.  Jason reads a Bible story and we talk about it during this time.  So even though Shilo is mostly sleepy for this feed, we still have her with us so she will grow up being part of this.  We all pray together, and then the girls both go to bed.  Jason and I usually spend time running around getting things picked up and cleaned up that have been missed (toys that hid while Abigail was cleaning, dinner dishes, etc.) and then collapse on the couch together to hang out.  Around 10ish we do a 'dream feed' where I don't unswaddle Shilo, but pick her up and feed her while she sleeps.  She takes as much as she wants, and then I put her right back to bed.  Jason and I go to bed.  Sometime in the night (anywhere between 3-4 usually), Shilo wakes up to eat again.

*Sigh*  For now life will just be filled with a full schedule.  I actually don't mind the days when we get to stay home and this is our schedule.  I like predictability.  It's a little harder when we have appointments, or when Abigail is sick and needs her Mama a little more than normal.  That's our life for the time being though.  So you can all be forgiving about the fact that I am and will be writing much less for the time being.  I must run, I have a snuggling request that needs fulfilled.

We got family pictures taken and just got them back.  This one is a perfect description of how life feels most days. :)