long hospital stays.

i learned today of a friend of a friend who's settling in for a long hospital stay with their little.  while the situation is different than ours was, someone asked if i had any advice for a long stay.  i started to respond, but then realized i was writing a whole book.  so i thought i would offer it up in a blog post.  hopefully it will be helpful to her, but also to others who might come here.

so my two big things i heard a lot while we were inpatient, both from nurses and other parents were:
1) make sure to take care of yourself.
2) be strong for your little one.

here are my thoughts on that....

1)feel free to not get enough sleep because you want to sit and hold your baby.  feel free to sleep in the room because she's had a bad day and you want to be near her.  while it's important to take care of yourself, most of the people telling you that have never been where you are.  so feel free to figure out what works best for you.  while our little was intubated i got eight hours of sleep at night and a shower every morning.  i felt so guilty i wanted to puke most nights leaving the hospital to go stay at the ronald mcdonald house.  once she was extubated, i stayed in her room and went to the rmh to shower, eat, and take a little break here and there.  i slept there on weekends while jason stayed at the hospital.
so yes, it's important to try to eat, shower, and sleep.  however, the reason you are in the hospital is because you are taking care of your little.  so if things fall by the wayside, or you (like me) spend large quantities of time eating chips and drinking soda-when you get home you will likely go back to eating healthy.

2)feel free to lose it as much as you need to.  cry.  your baby doesn't understand you being strong or not.  and strength does not come from sitting in a room day in and day out with a sick baby and not crying.  i cried in the shower.  i went and ran up as many flights of steps as i could, then just sat and sobbed.  i cried while i ate alone in the rmh (others around me were a little uncomfortable the few times i did this).  i cried while i sat in shilo's hospital room.  if you have an older child, it's okay to cry too.  abigail saw me cry many times.  and we talked about how emotions are a good thing.

some other things i found helpful.

  if you usually have to pay for parking, figure out if there's a way to get it reduced, free, or a parking pass.  also, if you are paying for gas, talk to the social workers about help with that.

take as many free meals as you can get-gift cards, other people offering to bring you food, etc..  while our daughter had state insurance so we didn't have to pay for the actual hospital stay, eating, buying toiletries from the hospital (we only have one car and my husband had it), got expensive.  and while the rmh meals were great, there wasn't always one available, and some nights they were things i couldn't bring myself to eat, even for free. ;)

be honest about what you need.  if someone asks what you need, and what you need is someone to do your laundry, then hand it to them.  i had a few friends of  friends who wanted to help if they could, and i handed them a load of laundry, dirty underwear and all, and let them wash them.  it was a huge help for me time wise (i didn't want to take hours sitting in the rmh washing laundry).  even others cleaning your house, mowing your yard, so on and so forth.  people want to help, and they often don't know how.

don't be afraid to be the 'crazy parent.'  i went toe to toe with the doctors over different things many times.  by the end of our stay, they all respected me, and knew that i was informed about my kid.  on the flip side, the residual guilt i have over a few things are the ones that i didn't fight when i felt like i should have, and they turned out sucking for my kid.
that will lead into, do your best to let go of guilt day to day.  talk to a counselor if you need to.  there are social workers on staff that can help you as well.  and there are often patient advocates that can help you out as well.  don't feel silly talking to them.  it's their job.  and it's okay to need emotional help getting through something that's pretty hard.

some nice things to keep on hand:
lotion, lip balm, and nasal spray.  hospital=the driest air you've ever experienced.

stretch pants.  you can sleep in them, then wear them all day.  i find that even in my short stay i tend to change shape a little while living in a hospital.  so the stretch pants do a nice job accommodating my changing waist line.

cash.  quarters.  while most places take debit cards now, it's handy for the 10 p.m. vending machine runs because you missed dinner, or the deliveries because the rmh doesn't have a meal that night.

your own pillow from home (although i would leave this at the rmh.  i am a little paranoid of hospital germs coming home).

a blanket for the room that you don't mind throwing away when you leave.  the rooms are often cold. and then there's the germ factor of it touching the floor, or if the cleaners accidentally throw it in with the laundry, you don't want to be bummed that you will never see it again.

social media access.  this was important for me to feel connected, and keep people up to date.  i also appreciated being able to skype with my husband and big.

books, a kindle, a nook, whatever you do to pass your time with reading.  crafty material if you want crafts.  i made flowers to decorate shilo's bed, and i hung hearts from her ceiling and all over her walls.  she had the coolest room around.  i also made hair bows for her and abigail.

movies/access to netflix/music etc.  it helps pass the time.

if your kiddo can be dressed, button front pajamas or clothes (not over the head) so that tubes and wires can still be easily accessed, and your kid looks cute.  if they are hanging out in a diaper, baby legs, socks, and hair bows are fun ways to help you feel like you are still taking part in dressing them.


lastly, the best thing i did while i was there, was hang up pictures.  there was a picture on shilo's bed of her smiling.  it really did help the doctors who came in to see that she was a happy healthy little girl, who happened to be sick and in the hospital at the moment.  i also hung up some family pictures both for me, and for others to realize that while they might have been 'doing their job' this was my life.  and this is my daughter. and there are people at home that we are missing, and that are missing us.

if you do nothing else from this list, please do the pictures.

also, if you want to read about our 96 day hospital stay, it starts here.  and there is a happy ending.  it looks like this.





praying for all of those families in a hospital tonight.

love.

i can handle seizures like a pro.  when my big spikes a fever of 105 (which isn't completely uncommon when she is sick), i know ibuprofen and thirty minutes will work wonders.
but my little with a fever strikes fear in my heart like little else can.  there's words that dance around in there. taunting me.  

down syndrome.  somethings that isn't that big of a deal for us.  an extra copy of her twenty first chromosome. there are these things though.  these 'more likely' things that come along with that extra copy.  and those are the words that live in the recesses of my mind.
that is, until i pick her up, and she's warm. feverish warm.  and then they sprint forward causing my heart to beat faster, and my memory to remind me just how close we have come to loosing her.  they carry with them names of other brave warriors.

sometimes i hold her, and a song comes on, and i'm reminded how it was a song i had planned to use for her funeral.  because i thought there would be one.  and i thank God, over and over that there wasn't.  and then i pray, and beg, that He would let me raise both of my girls.  i love them.  i love being with them.  there is joy in there being.
so i rock little.  tears fall down my cheeks. they are being bottled, like so many before.  how is it, that i can love one so much?  

 
and i know, without a shadow of a doubt, that i would do it all again.  no matter how hard one tries, you will fall.  hard.  deep.  and you will allow your heart to get broken, if need be. love never fails.

help with the dishes.

but a moment.

i could feel it.  pressing in.  pushing.  taking.  i felt the urgency to take it all in quickly.  soak up every last second.  swallow the joy down deep.  drink in the laughter.

time.  it seems to constantly steal my babies from me somehow.  and there are days i can feel the urgency of it.  i can hear it yelling, 'pay attention, tomorrow they will be bigger.  older.  different.'  and i slow down.  i sit. 

 i stare.  i click over and over, trying to capture time.  my heart opens up and tries hard to drink deep, and swallow the love of the moment.

fix you.

these words have been going through my head today after a conversation i had this morning.  they are from the song 'fix you' by coldplay:

   'when you try your best but you don't succeed.

    when you get what you want but not what you need...
    ...and the tears come streaming down your face.
    when you lose something you can't replace...
    ...and i will try to fix you.'

those are the specific words from the song that apply to this situation.

so here's the scene-with my thought process interjected. i STILL suck at knowing what to say in these situations and to these questions.  mostly because lots of them actually sting so much that no matter how many times i've heard it, it catches me off guard.

sitting with another mom who i see somewhat regularly at a play time event i go to locally.  she is asking some questions about shilo, and her feeding tube.  somehow formula comes up which leads to a discussion on the fact that both of my girls were adopted.  i will admit that i'm always surprised when people are surprised by this.  anyway here's the brief of how it went.

'how old were they when you got them.'
'i was in the room when abigail was born, and we met shilo when she was four days.'
'you were in the room when abigail was born?  didn't her mom want her?'
i come close to tears every time someone asks this question.  'want her?'  of course she wanted her.  she wanted her, and she wanted what she believed to be best for her at that time.  so she asked jason and i to parent her.  my actual response.
'yes, she wanted her.  and she knew she couldn't take care of her like she wanted to.  so she placed her with us.'
'do you still see her.'
'yes.'
'and that's fine?  i mean it works.'
'yes.'
'and shilo was four days when you met her.'
'yes.  we found out about her after she was born. her mom had planned to place before that, but one family backed out, and she went into labor early.'
'did you know she was going to have Down syndrome.'
'yes. we intentionally set out to adopt a child with Down syndrome.'
(five minutes of how awesome that is, and how very hard that must be-countered with my go to of how not awesome it is, and how not hard it is).

'so do you want to have kids of your own?'
'well, these are my own.  but my husband and i don't care if we get pregnant or not.'
'you still could.  you are young.'
'i'm 31 and we've been married for nine years.  it seems unlikely at this point.

this is the point where things go from awkward to the feeling that others see me, and our family as something to be fixed. the next few minutes are spent telling me how i'm still young,and i could still have kids of my own.  then the stories start in on other people she knew who were married 800 years and then they got pregnant, and so on and so forth.  it's this entourage of how everything is going to be okay, we will be fixed when we just have 'a child of our own.'
it's the idea that we tried, and we didn't succeed.  we got what we wanted (children) but not what we needed (biological children).  we obviously spend our days crying and greiving because we haven't gotten pregnant, and we feel like we've lost this amazing universal experience that can't be replaced-even with the second rate choice of adoption.  so of course, along comes the world with all of their ideas, suggestions, and so on, on ways we might be able to become 'real parents' someday.

we're not broken.  we aren't sad that our family of four came to be because of adoption.  they aren't a second choice parenting option.  i wish i had the ability in these situations to say what i really mean.  but, i'm often working hard to keep my emotions in check, and don't get out that we are more than content with where we are.  maybe, just maybe, we aren't missing out on the awesome experience of being biological parents.  maybe you are missing out on the incredible experience of getting to adopt.  i mean, our girls' stories are way better than birth stories, in my opinion. or, perhaps, families are formed in lots of different ways, and we can just celebrate that instead of viewing our way as the only logical way anyone would ever want to have children.

at very least, please, stop trying to fix us.  we're pretty happy with what we have.

    

showing up.

it had been a long day.  i was tired from parenting and battles.  tired of the mundane things i do over and over every day.  i just wanted to get out.  so when jason arrived home, i got on my bike and rode until i couldn't anymore.  i pulled over on the trail and sat by the river.
my mind went over the past couple years, as it does often.  it went over the joys.  it went over the hard.  and it arrived in the same spot it always does.  God, where are you?  i feel like we were obedient to what you called us to.  i don't need a pat on the back, or an award.  but, i feel like you handed us this really hard lot in life, and then ran the other direction.
more specifically, i feel like that day, the one where we entered the hospital and didn't leave for three months, that you stopped at the doors to the hospital and waved at me as i walked into the hardest and most difficult things in my life.
tears welled up in my eyes, as they often do.  i don't share this part of my journey with many.  only the select few closest to me.  i don't want people to read into this that i regret our daughter.  i don't.  i don't want people to read into this that shilo is somehow a burden.  she is not.  all this is, is a wrestling match between me and God.  and it always ends the same way.
'God, if you are listening, if you care, PLEASE show up.  i don't care how.  i don't care where.  i just need to know you are still walking this with me.  i believe.  please help my unbelief.'

i hopped back on my bike and rode home.  i felt a little better.  when i arrived i was greeted by hugs and happy faces from two little girls, and supper waiting on me from my husband.  i sat down to eat, and jason came in and handed me my kindle.  he had no idea what i had just prayed (or that i had been praying that same thing over and over for months).
'check your e-mail.'
'why?'
'you should just check it.'
he smiled and walked away.  i pulled it up as i placed a fork full of food in my mouth.  i stopped chewing, and tears streamed down my face.  there, before me, in my e-mail was the most gracious offer we had ever recieved.

'I know it's not simple for you guys to leave your girls, but I wanted to let you know we'd love to send you away to wherever you want to go for as long as you feel comfortable being gone this year or next.  Totally an open invitation, just let me know when you decide is a good time and your dream vacation.'

while we have no idea when or where this will take place, i am certain that God has heard me.  things aren't perfect still, but it's nice to feel like i'm not walking this alone.

        



        

shilo.

a video of some of our little's signs, as well as her being her very usual active self (i.e. a black eye (you can see in the video) and fat lip all in the same week). there's also some awesome crazy post bath hair, and she has a cold so her mouth is hanging open through most of it.
she can't yet crawl, but she can get where she wants to go, and get into what she wants to...the video ends when she decides to try to go for some electrical cords.

first day.

awesome first day outfit and smile.

working on math.

plenty of time to play with her sister.

and cook herself something yummy.

reading book.

done.

i must admit, i have been super nervous to see what our home school days would look like.  i'm certain that day one is not a good indicator of what every day will look like.  i'm also certain that we have made the best choice for our big.  she has lots of energy.  we had plenty of time to take breaks between subjects, eat lunch, play with her sister, and still get all of our work done.
i'm really excited to see what our year holds, and to watch my big learn all sorts of new things.  i'm also reminded just how much i love teaching my daughter.

*disclaimer* we did more than just math and reading.  that was all i took pictures of.