Thursday, December 31, 2015


A year ago right now, I had just been discharged after a week in the hospital.  Tiny was still inpatient, but got to move into a room with me.  We were mastering breast feeding together.  It was all beautiful.  And hard. 

Now it just seems surreal.  And, I sit here tonight thinking about the past year, and all it's brought. We aren't really a family that makes resolutions.  I mostly feel like they're probably just something else for me to feel guilty about, when I inevitably fail at them. 
But, this year, it feels a little magical getting to start a new year.  Like, somehow, things from the past really may have been swept away.  All is new.
Maybe I really can put some new habits into practice.  And throw some old ones out. 

Most of them will revolve around saying things like, 'letting your children watch two episodes of sesame street because you're really tired from being up in the night with tiny, does not make you a horrible parent. you're doing great, mama!!'
And, 'be more gentle with big.  She's just a kid.  She has been through a lot in her short seven years.'

I think I can totally do these.  Maybe my resolution is really just to be kinder.  To myself.  To others.  The first one will likely cause bleed over into the second.
My other resolution is to sleep through the night.  If someone could let tiny know about that one....

Happy New Year.  May the good things of the year outweigh the not so good ones.

Thursday, November 26, 2015


i have always hated hand washing dishes.  the standing.  the grossness of all the food scraps in the water.  the oily feel of pots and pans.  hate. it.  so when we bought our first home a little over ten years ago, i laminated a small piece of paper, and put in my wallet.  it had the daily, weekly, and monthly cost of my favorite treat.  and how much i could save up towards a dishwasher if i didn't get it.  at Christmas, i asked for money to go towards a dishwasher.  and, i got one.  it was installed.  and for ten years, it has been being loaded and unloaded.  (it turns out, i don't like dishes in general.  not just the washing them by hand thing.)
tonight, i stood in the kitchen of our new house, and washed dishes.  we no longer have a dishwasher.  we don't even have room for one.  we downsized in square footage.  we have three bedrooms now, but only one bathroom.  but, most importantly, we live in a one story house.  for four years, i have been carrying little up and down our stairs for bed, and for nap.  it's tiring with a baby.  it's exhausting with a four year old, and if you've ever carried someone who has low muscle tone, it's a whole different level of physical than a typical child.
on top of all of that, shilo didn't have access to her bedroom.  if she wanted to play with toys that were in there, she couldn't.  yes, someday she'll walk.  someday, she'll safely navigate steps.  but, for now, a one story house meets our needs much better.
as i stood washing dishes though, i thought of how backwards it must look to others.  going smaller.  and how at some time in my life, an easier way to do dishes seemed like the best thing, ever.  but, life is so much different now.  and moving tiny out of our bedroom and into his own room is great.  and watching little crawl into her room and play, and come back out.  it's enough to make me all sorts of weepy.
and to top it all off, our beautiful new home is a bungalow.  the thing we have always wanted.  beautiful woodwork.  a fun archway between the living room and dining room.  hard wood floors.  a huge front porch that will one day house a porch swing. completely refinished, recently.  everything and more than we could've hoped for when we began searching.  plus, it's only three blocks from where we used to live. 

this past few weeks have been long.  we've had multiple trips to the children's hospital, an hour away.  one for a sedated MRI, one for a kidney ultrasound and urology appointment, and one for pulmonology. we got good news.  we got not so good news.  we scheduled surgery for asher in February.  we will be referred to orthopedics for asher's scoliosis.  it's congenital.  he has a hemi-vertebrae and some misformed ribs. we will be referred to a neuro-surgeon for his lipoma at the bottom of his spinal cord.  his hydronephrosis has resolved.  both girl's lungs are great. 
a dishwasher seems so insignificant at this point in my life. 
it feels cathartic to turn on music and plunge my hands into the warm water.  it is comforting to know that there was a way for me to fix the mess that lay on the kitchen counter.  that when i finished, things would feel new. better.  controlled.

since the newest diagnoses, i've thought back over my life as a mother.  where i started.  with schedules and parenting books, and doing everything just so.  and where i am now.  my attempts in the beginning to do everything 'right' were because i believed i could control things.  if i just did everything, just so, my kids would sleep well, and eat well, and obey.  they would be smart. and healthy.  so very healthy.
but, it turns out i'm raising tiny humans.  and it's messy, and dirty, and they have genetic disorders, and brain damage, and misformed backbones.  and, there are nights i lie awake, figuring out how to fix it all.  how to go back in time and be a better mother, a better advocate, and undo the things that are broken in them.  and as i lie there, i become completely swallowed by the grief of being unable to make things easier and better for my children.
and, so, the dishes become an easy way to fix things.  to make them right.  they were once dirty, they are now clean.  and i can do it again. and again.  it's healing. so i sing along with Lauren Daigle and remember that He can make dry bones into an army.  and He can walk with me through hard things, breathing in life, and singing truth over me, much louder than the lies the enemy likes to whisper.

Tuesday, November 10, 2015

a one story house.

we're on a little journey here.  one where we spend a lot of time searching.  one that will hopefully end with finding.  but for now, we pick things up along the way.  one little thing here.  then another over there.  and sometimes they make lots of sense together.  and others it seems like maybe we'll end up going down lots of paths to find. 
and in this searching, Jason and I, we spend time taking notes.  and discussing those notes with doctors.  and therapist.  and each other.  and trying so hard to pull all the things together.
we knew at the beginning of these sorts of journeys, and onward, no matter how long, there is often a lot of energy focused on the fight.  fighting to make it over, across, through.  to just be heard. to figure out what's best, and do that.  to learn to live in a place of hope.  of faith.  no matter how big the piles of shit are that we just seem to always be stepping in.

today. today felt like we managed to move forward at sprint pace, but marathon distance.  our first victory of the day, a new house.  a new, one story house.  a house where I will no longer have to carry children up and down steps multiple times a day.  a house where little can crawl into her bedroom and play until her heart's content.  a house, where, in the future, tiny can do the same.  a house that will work so much better for our families needs right now. 

and then, an appointment.  I pulled up tiny's shirt and said, we have noticed his back looks weird.  i'm not going to point it out.  I just want you to look at it and see if you notice anything.  and she listened. really listened.  and looked.  and told me something I almost suspected, then pushed out of my head very quickly.
1 in 10,000.  that's the statistic for children who have congenital scoliosis.  tiny has congenital scoliosis.  we have no idea what this means down the road.  we will have some imaging done. we will see a specialist. we will do what needs to be done.  we will continue on searching for answers. 

but, somehow the fact that we got word that we got the one story house, one hour before a doctor said my ten month old has scoliosis seems like a beautiful mess.  maybe they aren't connected at all.  maybe it's purely coincidence.
then again, maybe i'll cling to my faith in a God who would make certain we had the exact right place to live, just in time to find out a little more about how important it will be for our family.
to continue to live in a place where the piles we step in often seem to grow in size and quantity on a daily basis, I have to cling to the second conclusion.  without it, this is all too much. it's too cruel.  but, when there is hope.  when there is faith.  then, can we move forward on this journey.  then, can we remember that the small things are tiny sparks of what lies ahead. of all things being new. of new bodies.  and no more brokenness.
but for now, for today, heaven showed up in a one story house.

Sunday, October 25, 2015

words. dna. anxiety.

the last post I vaguely alluded to it.  this one may not be any more specific.  we'll share more when we know more, and when we're ready.

first of all, asher is a happy, healthy, almost ten month old boy. 
but, he's also a very delayed little boy.  with more going on.  and, we haven't talked to many people about it.  for lots of reasons.  he was early. he was small.  even with putting those in the equation, things just don't add up.
so when he wakes at four a.m. to eat, for the third time that night, I nurse him, and lay there wide awake, going over every symptom, over and over and over.  I diagnose him, then undiagnose him.  I remind myself that there are millions of disorders I know nothings about.  I tell myself to sleep.  I take a deep breath and unclench my jaw.  I come downstairs and fall asleep to a television show because it makes my brain stop the cycle. 
but, then when daylight comes, i'm exhausted. and grumpy.  and not the best mom to any of my kids.  and over and over throughout the day I have to resist the urge to lay down on the couch and let the anxiety swallow me.  I want to scream, 'I can't do this.  I'm at capacity.  I can't take anything else.'

but, I make it through the day.  and the next.  and I whisper to myself, 'you can do hard things, andrea.'  I laugh.  I read books.  I sing.  I dance.  I go for a bike ride with big.  I cook meals. I apologize a million times for losing my temper, for not paying attention, and for my general disdain towards all living beings I interact with each day.

and last night, I did his dream feed, and then held him for just a few more minutes.  I rocked him as he slept, and prayed over him.  I don't have any great words to pray right now.  I don't even know what to ask for.  so I just tell Him things like, 'this is really hard' and 'for the love, please let me get a solid chunk of sleep tonight.'  And I looked at my son, and it occurred to me that every cell in his body, every copy of dna, every chromosome, God knew exactly what they look like.  He knew where mutations might have happened.  He knew the exact time they took place.  He knows what the diagnoses is going to be.
and for the first time in weeks, it felt peaceful to me.  it didn't change things right now.  but, it was comforting to think of God knowing. To picture Him sort of standing over the geneticist when they look through his blood sample trying to find the mutations. 

Tuesday is the beginning of this whole process for us.  we will see a specialist.  we will list all of our worries.  and we will begin looking for answers.  a diagnoses is just a word, in reality.  it doesn't change who our son is.  it can give us more information about him, about his needs.  about his future.  but, he will continue to be the same little boy he was the day before we have an answer.

Monday, September 21, 2015


there are some lines from a song i love that ring true, today.

'there's the presence of thieves, who only want, to rob you blind.
they steal away, innocence and peace...'

years ago, we sat in a doctor's office.  i had worried myself into feeling like we should see a geneticist.  what i had assumed was the issue, was not.  but, in some horrible way my fears were validated.  there was something more going on.  and so was the diagnoses of NF.  and the year that followed, i regret.  i regret the amount of time i focused on limitations and what if's instead of my daughter.  i regret that i became so obsessed with checking for tumors that i could no longer be the one who bathed my child.  i missed out on joy.  innocence. peace.  it was stolen from me when i focused on the thief.

then, maybe consciously, maybe not, i jumped in a second time already knowing things so that i could avoid shock.  nobody was going to get me with a 'hey, by the way, she's got this going on.'  but, we still ended up surprised.  i handled it better though.  and i didn't try to will away the delays.  i just accepted them for what they were.  sure, i would love for my stubborn little to stand up and walk already, but i'm not anxious about it.

and, today, i am fighting those thieves again.  the words on their own seem small.  there's this small thing. and that small thing.  then this.  then that.  separately, they're no big deal.  then my head goes through the list, one after another.  my heart starts pounding.  my brain whispers over and over, 'there's something more. something bigger.'  but, i fight.  i fight with all i am.  'maybe. maybe there is something more.  but, i'll worry about that on the day we know.  today, i'm going to dance.  i'm going to read stories.  i'm going to laugh at his little tongue play.  i'm going to smile at how he is able to find tags on the inside of my shirt seem when he's nursing, or on toys, or even the stroller. i won't let you take from me that which i can't get back.'

it's hard.  when you've lived in a world full of fears coming true, the thief known exactly how to get to you. he'll take today from you any way he can. 
but, i will fight.  i will fight by not reading the list of milestones he should have met.  i will fight by not comparing him to other babies his age (or younger).  i will fight by celebrating what he is doing.  i will fight by presenting my fears to the Truth, over and over.  i'll let Truth deal with it.  Truth conquers the thief over and over.  and, in the end, It will win.

Thursday, September 10, 2015

the return.

we have our computer back. finally.  not sure that i'll have tons of time to write, still, but at least I can post some pictures.

life is crazy here right now.  Jason is running a small business.  working 75+ hours a week.  plus he's gone a few times a week for other commitments. we are back into home schooling routine.  little's respite nurse comes on the morning that we have co-op so I only have to take big and tiny.  I still look around for my third kid around 100 times while i'm there trying to figure out which one i'm missing, and where she is.

big just turned seven.  she loves all things fairy, and frozen, and princess.  and pirate, and swords, and transformers.  she's making great strides forward in reading and math.  she's becoming less shy, and making new friends.  she doesn't let me take her picture very often, but when she does she is pretty much always making a ridiculous face of some sort. she loves helping in the kitchen and is getting really good at cutting with knives and using the microwave and stove.  she's a skilled two wheeled bike rider.  she loves helping out with her brother, and being a mother hen over both her younger siblings.


 little is about 95% potty trained.  she tells us more and more often when she needs to go. she is signing in full sentences, and using more new signs every day.  still no closer to walking, but hey, who doesn't love having an almost four year old to carry around all the time. she can climb well, so there's that, that makes our lives more adventurous.  she enjoys hitting tiny in the head, poking his eyes, grabbing his nose, and attempting to bite his fingers if he gets them anywhere close to her face.  she has also mastered climbing into the swing and bouncy seat.  she radiates joy, and is about as ornery as they come.

tiny is 8-1/2 months.  he's growing well.  loves nursing.  not so interested in table foods.  did I mention he loves nursing?  he's rolling both ways and close to sitting.  he does p.t. once a week for some delays.  he sleeps pretty well most nights.  he is still a pretty laid back little guy.  he's started having separation anxiety (which really just means, 'why is my mother not the one holding me at this very moment).  loves baths.  thinks shilo is the funniest person ever. he just sort of fell right into place in our family like he's always been there.


and me.  well, over all i'd say i'm doing well.  i'm tired. perpetually tired.  I hear that some day my children will all like sleep.  for now they tag team night and early morning waking as some sort of torture ritual so i'm too tired to say no to things I normally would. 
i'm starting to feel like i'm managing stress and anxiety better than I have since around shilo's hospital stay some time ago.  that being said, I was diagnosed with shingles yesterday.  so while I emotionally feel better, apparently the stress of a husband who's gone a lot, homeschooling, potty training, doctor's appointments, parenting, house keeping, and life in general has taken it's toll on me. 

even with all those descriptions, i'm enjoying lots of things about where we are in life right now.  so, i'll share those instead.

Thursday, July 30, 2015

a word.

On my journey of healing, and figuring out who God is I've enlisted a guide. Someone I go to every few weeks and vomit all my hurts and hard and questions.  She patiently helps me sort through my piles.
A few weeks ago I shared an image I have.  One of carrying my small baby girl into the hospital, and seeing Jesus standing at the door as I walk in alone.  I felt very abandoned in that place.  She challenged me to ask Him where He was.  So I did. And I am. And I will.
There hasn't been any lightning flashes. No huge revelations.
There have been some small glimpses. Some stories. A sermon. Things that flickered hope into hopeless.  And a word. One word that breathes it's refreshing breath on me every time I ask.  It's the same word that is the end of my thoughts when I replay Asher's birth story.
Mercy.  An act of leniency or compassion when things could've been different. Maybe should've been.
Shilo shouldn't have lived. The funeral I had planned, the songs I picked, the words that rolled around in my head, I got to tuck them all away as a painful memory. An almost. I didn't live them out.  Mercy.
Asher would not have survived until term. Only my husband and the friend who watched the girls know about the day the week before when he didn't move all morning.  And I poked and prodded and went to the doctor's office trembling.  And, the other times when I told Jason and my doctor that I didn't feel like he was growing.  But, in some crazy twist of fate, and life, I got very sick.  And I have a seven month old that I nursed and put to bed tonight. Mercy.
I doubt much in my life will ever wrap up neatly.  Those packages seem meant for others.  But, instead of packages tonight, I'm going to hold tight to the messy, perhaps too small, gift I have been given in a word.
I'll kiss my mercy.  I'll listen to them breathe.  I'll snuggle in with them. I'll lose my patience. I'll get busy. I'll forget. I'll start all over.  In the end, mercy.

Thursday, July 2, 2015

Where I've been.

I have lots of things I could write about. I miss blogging.  But, our computer is broken, and I can't bring myself to write an entire blog post via I-pad. Not only that, I can't figure out how to post pictures to my blog from it. And let's be honest, the pictures are way funner than my words.  So if you're wanting to see a small stream of what's happening, feel free to find us on Instagram as munciemenn.
Other than that, we're settled in nicely with three kiddos.  Tiny is six months.  The summer has been cold and very wet so we've mostly been watching fairy movies and signing time.  Thus far my goal of making it through the day has been successful every day. So I'd say we're hugely successful here.

Thursday, April 16, 2015

myself, when i am real.

a year ago I was starting to feel it.  the wounds were scarring over nicely, and the pain had diminished.  I could look at pictures of our past few years without crying.  I could pray.  that was a big one for me. the feeling that God had abandoned me in a hospital room for three months was fading.
but, everything backed up again with the birth of my son.  I've spent the months asking why, and knowing i'll likely never get an answer. the distance returned.  the trust diminished.  I can happily spit out the things people want to hear so they aren't uncomfortable, 'we are just so thankful that he's here and okay.'
and, it's true.  I am thankful.  but, i'm also angry.  and sad. and frustrated.  and I want more than anything to know God.  to feel Him.  to think He might be hearing me when I ask for things.  but, not just hearing me.  responding to me.  wanting to give me good things.  no more hard please.  I need a big long break from hard.
the past few weeks have been wrought with ugly parenting things with my big.  I never see them coming, and I have no idea if we are doing anything right when these things hit.  so tonight, I climbed up the ladder to her bed, and laid next to her.  I sang to her.  she sang to me.  she talked about things that seem so small from my adult world.  they're significant to her.  so I listened. 
then, she rolled over, sucked her thumb, and rubbed her lambie between her fingers.  I rubbed her back and silently thought.  or prayed.  or maybe those two things are one in the same.  I thought about how angry I am about hospital stays.  how I just keep cycling through the same things over and over.  and, maybe, she's angry about hospital stays too.  but, she's six.  and she doesn't know exactly how to say that.  so it looks different than it does for me.
I thought about how I can go to God over and over again, with my ugly thoughts, and my frustrations with Him, and how He doesn't ever seem to lose his temper.  He just lets me be angry.  and I pictured him rubbing my back as I fall asleep at the end of a day where I have spent the whole day stomping my feet and yelling at Him.  how He always seems to be there when I look back at things, right in the middle of it all, sustaining me.  and I told Him that I was trying.  trying to figure out who He was.  and that I would continue to seek, pursue, and run after Him, even on the days where i'm not sure how I feel about Him.  and I told Him that was really hard for me because I was afraid that He might abandon me.  get angry and decide i'm not worth the effort. or that He already had.
I eventually kissed big on the head and told her she was my favorite six year old in the whole world wide.  and I thanked her for singing to me.  the song she sang, was a kids song, by an artist named Justin Roberts.  lots of his stuff is really silly.  but, for some reason, she picked a song from one of his c.d.'s that is taken from old testament stories.  specifically, this song was taken from job. as if her lips were singing a soothing balm to a broken heart.

'where were you, when I laid the earth's foundation?
where were you, when I set the stars in space?
and they all sang together.
they all sang together up in space.
allelu, allelu, alleleuia.'

(if you want to hear the whole song, this is not him singing it, but it has the words with it)

someday, all things will be made right.  maybe, i'll even get to see the bigger plan that played into the last three years being hard.  but, for now, this doesn't wrap up neatly.  things are hard.  and, I don't want to act like it's all okay.  I struggle.  if you struggle too, that's okay.  if you're tired of hearing pat answers, and warding off those who blame you so that they can continue to believe that really hard things are from a lack of faith, come join me in.  it's hard here.  but, there are lots of really good days.  and laughter abounds because I use sarcasm to get through the hard ones.

Friday, March 27, 2015

what i want you to see.

last night, papa was gone for Thursday night practice.  like he is every Thursday.  I was making dinner.  tiny was sleeping.  big, little and I were in the kitchen dancing (and just to be completely honest, little was laughing at my singing).  it was a moment that I felt that, 'this is the kind of mom I pictured myself being. dancing in the kitchen while I make dinner.;
my mind quickly reminded me of all of the things I was falling short on in that moment.  my house was a wreck.  books covered the floor of the dining room.  toys all over in the den and kitchen floor.  dirty clothes on the bathroom floor.  dishes all over the counter.  both the kitchen and dining room table needed washed.  there were  multiple piles of papers in both rooms as well.  and to top it all off, my kids were going to be eating cheesy noodles (box mix macaroni and cheese, which I validate because I buy the high end organic stuff) for the fourth time this week.
later I found myself sitting on the closed toilet, nursing tiny, while little went potty, and big was swinging on her indoor swing that hangs in the bathroom doorway. 
little was doing acrobatics and signing 'let it go' in between, while big was standing on the swing and talking at me about her birthday party (that isn't for another six months) and all the things that would be happening. I was truly not taking in anything big was saying, which was causing her great frustration when she would ask a question and then have to repeat herself. also as was bound to happen, little fell off of her toilet, it flipped upside down and, hooray, she had gone potty.
it struck me that if I were to share these moments with others via some sort of social networking sight, I had two ways of presenting it.  one made me look really good.  the other made me look not so great.  neither would be a lie.
they were both true.  I was doing great.  there were things I could do better.  there was lots of fun.  there was lots of chaos. I love being a mom.  I want a break from my kids. 
there are those people who only share one half of these stories all the time.  those moms who show their pinterest projects, and smiling kids, and the dancing in the kitchen moments. clearly they have it all together, and parenting is a breeze.
then there are those who share how they can't get their kids to pick up, or eat healthy, or even to sit on the potty, yet alone pee in it and spill it everywhere.  clearly they are failing, and parenting is really hard.

i hope that my children remember and drink in the memories of dancing in the kitchen.  i also hope they remember that our house wasn't always neat.  we have fun.  we laugh.  we get frustrated and raise our voices a few levels higher than we want to.  we say sorry.  we forgive each other.  and, we do it all over the next day.  parenting is great. and hard. and great.  it's because it's full of interactions between humans.  and, if i can do anything well, it will be to teach them to give themselves grace for the moments that i might not want you to see on facebook.

Monday, March 2, 2015


i'm swimming.
most days, against the current.  and the current is strong.  and it threatens to pull me back with it.


but, I keep fighting.  kicking.  going places.  then, a day comes along.  and it threatens to not just drag me backwards, but to pull me under.  and the water from above just keeps coming.  washing over me.  leaving me breathless.

there are days that start with the continuation of processing the neuro-psych evaluation we got back about our big.  the words the doctor spoke, both gently, and encouraging, still left us unsure of how to best move forward in schooling her.  and, it looks like home is the way to go.

and a little, who's IEP is still not yet done.  and we should get services in place in time for the school year to end, and nothing to have actually ever been implemented.  all because we fought for what was best for our daughter.  and today she's sick.  and having seizures.  and incessantly asking to watch signing time. and starting to walk up the steps by herself.  and climbing onto the couch to unfold the laundry as I fold it.

and a tiny who only turns his head to the left.  so much so that he can't turn his head to the right, and the back of his head is getting a flat spot.  so we schedule an appointment for p.t.  and a follow up renal ultrasound to see if he outgrew his hydronephrosis.  and the tucking away of the anxieties about him not yet meeting any milestones, and regularly crossing his eyes.  and longing.  wanting something to feel easy. 

as the waters rush over, I hear the voices from above.  the ones that asked me while I was pregnant what I was going to do with a healthy kid, a typical kid, a normal kid, this time.  and wanting to grab them and pull them down with me.  to let them see that nothing feels normal from down here.  that once you have been here, you lay in bed at night evaluating every thing your child is, or isn't doing.

when you have been down here, you end up needing a counselor to walk you through your anxieties.  they are big, and they feel real, even when everyone else around you is telling you that everything is fine.  it doesn't feel fine. it feels hard.  and overwhelming.  and, a little bit like things aren't allowed to be easy.

from the outside,  it all appears normal though.  most of the people on the sideline just see someone swimming.  and some of them cheer loudly.  the cheering is often what keeps me from completely being swept away.  it lets me know I can do another lap.  every now and then, I even have someone who tags in for me for a while.  who takes a few laps, and lets me sit on the side, huddled under a towel, catching my breath.

tonight, i'm tired of smiling through things.  i'm tired of specialist, and therapies, and meetings, and evaluations.  i'm tired of hospital stays, and learning new diagnoses, and the fears that have taken up residence in my head.  so i'm going to choose to share those things.  i'm going to choose to be real. because today, tonight, it feels like i'm drowning.
tomorrow morning, i'll get up, crank up some music, and sing louder than the fears in my head. 

Monday, February 9, 2015

6 weeks.

we have a sweet little six week old boy.  as you can imagine, our days are spent lovingly gazing at him as he sleeps peacefully on us.  when he isn't sleeping, he is contentedly breast feeding while peaceful music plays in the background.

see.  these pictures prove that our lives are blissfully peaceful right now.

unless, of course, you come during one of the millions of moments when we aren't taking pictures.  then you would see a very easy going 6 week old, sleeping amidst the chaos and noise of two big sisters.  or you might catch a glimpse of one of his sisters (who will go unnamed) patting his head much too roughly while I try to breastfeed him.  the same sister also likes to climb onto the couch (a newly acquired skill) and then attempt to get down by any means possible, leaving me diving across the couch multiple times a day with a tiny in my hands.
yes, the small snapshots of our lives are nothing at all like our realities.  and, they do nothing at all to capture the out of control noise levels in our home.  somehow, with the third child, I am much more realistic.  while I do sometimes hold him and just stare at him, my thoughts during that time aren't the sweet sentimental thoughts I often had the first couple of times. instead, I confess to him my short comings 'hey buddy, mama is going to get frustrated with you some day.  mama might even yell.  i'm sorry.  i know i fall short.  but, i love you something fierce, and I promise to do my best to be patient and kind.  just know, you were born into an imperfect family.  as a result, you will learn quickly about saying sorry and forgiveness.'   he never seems phased by this. 

we are adjusting to life with three here.  it hasn't been easy.  it hasn't been hard.  it has just, been.  i'm thankful every day that God chose to give us a son.  it would not have been our timing for things, but, at the end of the night, after putting the high energy, boisterous big and little to bed, there's something redemptive in staring at tiny while he sleeps.  

Thursday, January 29, 2015

post-partum body.

i didn't shower for the first few days. multiple nurses came in to check my incision and told me i could take the dressing off.  two days in a row the doctor came in and told me the same thing, and that i was free to shower.  but, i couldn't.  i was too scared.  not of pain.  i just didn't want to see it.  the place my son had been removed from my body.  it was new.  it was foreign, and it had not been a part of me the last time i had seen myself naked.
on the morning i was ready, i slowly peeled the dressing off, and stood in front of the mirror, staring.  there were still steri-strips so it wasn't a great view of what was underneath, but i got the gist of it.  i don't know what i had been afraid of.  it was just a line, cut just above my pubic bone, and well below my underwear line.  it was healing nicely. 

it has sort of become a routine now.  after i shower, i stand in front of the mirror for a while.  i stare at the reflection of my body.  it's a new reflection, not one i've ever known.  i don't feel shame.  i just want to get to know this new me a little better. 
my breast are the largest they've ever been, and covered in stretch marks.  they rapidly went from an a cup to a d cup during pregnancy, and the little lines that have formed on them show that growth.  i'm still amazed by the fact that they alone are able to nourish my son.
my stomach has decreased greatly in size, but is still soft, and much rounder than it was before a life formed inside of it.  the softness of it seems fitting for holding a tiny one against me to nurse, and snuggling up with him as he drifts off with a  belly full and milk on the corner of his mouth.
and just like the first time, i stare at my scar.  there are no more steri-strips.  just a pinkish line that runs across my lower abdomen.  i run my fingers over it again and again. there are still nerves that haven't regained feeling in it yet.  it makes touching it an odd feeling.  i move my hands away and stare.  i feel like society would have me feel ashamed of this scar.  i was unable to give birth the way most women do.  but, there is no shame.  this scar, this pink line that continues to heal, saved my son's life.  i love it, and feel some sorrow that it will always be hidden beneath clothes. 
i stare at my face and my legs.  they were very swollen by the time tiny came.  i gained around twenty pounds in the last three weeks of my pregnancy.  i had gained around twenty five in my first thirty three weeks.  looking at them now it's hard to believe or imagine where they were less than five weeks ago.
i'm still amazed at my body.  i'm amazed at how it grew life, and continues to sustain it.  i'm amazed at how very much went wrong, how very sick i was, and how quickly it has recovered.  i'm falling in love with my new self.  whenever someone says, 'you look great' i agree.  because i feel great.  it's unlikely that i will ever look like i did before pregnancy.  i'm okay with that.  i also will continue to sing the praises of other women and their incredible bodies. 

Friday, January 2, 2015

asher's story.

when I found out I was pregnant, I sought out encouraging natural birth stories and books.  one of them that I came across was Ina May Gaskin's 'Guide to Childbirth.'  One of my favorite things she said is, 'your body in not a lemon.'  Someone telling women that their bodies were designed to grow and birth babies without crazy medical intervention.  i felt hopeful and empowered.  The rest of this post is Asher's birth story (or the parts i can easily recall). 

we found out at Asher's twenty week ultrasounds that he had a two vessel cord (single umbilical artery).  this happens in about 1% of pregnancies with a single baby.  i had none of the categories that made me higher risk for this (over 35, birth of three plus children).  however, everything else looked great.  and it's possible to have a two vessel cord, and a perfectly healthy pregnancy. however, most doctor's won't let you go over 39-40 weeks due to the higher risk of the baby passing in utero if the placenta starts to break down.  you also get a lot more ultrasounds due to the risk of intrauterine growth restriction.  it can be an indicator of other genetic disorders, but they show up with other markers and defects on the ultrasound.
I wrote out my birth hopes (i refused to call it a plan because i wanted to be somewhat flexible).  i had plans for a natural water birth. i wanted to be able to move around during labor to use different positions to help alleviate pain. i wanted intermediate fetal monitoring.  i did not want internal monitoring.  we took birthing classes.  i practiced my relaxing breathing.  i went to every appointment. 
we had an ultrasound at 34 weeks.  he was still growing, but seemed to be slowing quite a bit in growth so we made an appt. for four weeks later to follow up and make sure he was growing.
on Friday, December 19, we had put the girls to bed, and I was sitting on the couch.  I started to feel a little dizzy, and was having some weird visual disturbances.  I called my doctor, and she had me come to labor and delivery to be monitored.  my blood pressure was up, but all of my labs were perfect.  after a couple of hours of monitoring, it came down on it's own, and I went home.  over the next few days I kept an eye on it with an at home monitor.  I didn't feel great, but did my best to rest as much as I could and take breaks or lay down if it got high.
on Tuesday, December 23, I woke up, and it was already really high.  the doctor had me go in again, and once again, labs were perfect.  the nurse who took care of me that day just kept telling me it wasn't that big of a deal, and I might have to take a pill to help keep it down. she told me there was nothing genetic about it, and really down played it.  i still couldn't quite shake the feeling of being overwhelmed and scared.  i was extremely swollen from it as well.

the next couple days were more fluctuations.  and on Christmas day, we drove the six hours to visit my husband's family for Christmas.  we got there in the late afternoon.  I ate dinner, helped get the girls ready for bed, and just sat there.  as the night went on I felt worse and worse.  I started to feel nauseous, and my stomach hurt.  we had eaten steak and shake for lunch that day though, so I wasn't so surprised.  I took my blood pressure before bed.  it was up, but decided to try to lay down for a bit.  I laid down for about an hour, then got up and got sick multiple times.  I woke Jason up, and he called the doctor.  by the time we got the return call, I had decided we were going to the hospital because my blood pressure was still so high.
off we went to an unfamiliar hospital, six hours from home.  I puked as they checked me in.  they put me on the monitors and asher sounded great.  they did urine and blood work.  at some point the doctor came in and told me they were going to keep me for a 24 hour urine collection. he also said he was going to start me on a magnesium sulfate i.v. to keep me from having seizures.  we decided to send Jason back to his parents so the girls didn't wake up with us gone, and I would stay. everyone was calm and together.  nothing seemed that far outside of my other two experiences.
he left, and they moved me to a room.  a few minutes later, the doctor came in.  his assumption was that I knew or understood how sick I was.  my assumption was that like every other time, the labs would be fine, and they were just taking extra precautions.

'you're having this baby.'
'oh.  I thought you knew how sick you were.  you have HELLP syndrome. your liver enzymes are high, and your platelets are low.'

I called Jason and told him to come back.  he had to give the run down on how to use shilo's g-tube and just the girls in general to his family.  he woke Abigail to tell her the basics.  meanwhile the doctor is going through all sorts of things with me, and working to get my paperwork faxed from the doctor's office back home.  when he came back, we talked. there were multiple points where we both wept together and talked about how it seemed like nothing ever got to be easy for us.
at about two a.m. they started the magnesium sulfate.  at seven a.m. a new doctor came on.  I REALLY liked her.  at around eight they started the Pitocin, and by nine I was having contractions.  I continued to labor with the Pitocin until around nine that night.  I couldn't have anything to eat because I was high risk for needing a C-section.  I was making it on Jell-O and water.
they were continuing to draw blood and run labs on me all day to make certain my numbers weren't changing to drastically.  at about 8 p.m. the doctor came in and told me that I was not only peeing protein, but also sodium.  my sodium levels had dropped to 'dangerously low' and could start affecting my brain.  Pitocin can exacerbate this so they had to stop it.
I was two centimeters and about 70% effaced.  we decided to go ahead and rupture my membranes in hopes that would make my labor continue to progress.  from about ten p.m. when they ruptured them until around eight a.m., my contractions slowed to about every ten minutes, and not nearly as intense.  I wasn't making much progress.
they still couldn't start the Pitocin, and at this point I was no longer allowed to drink anything because it could further deplete sodium levels, and my ice chip intake was extremely limited.  they decided to try a drug called cytototek that is inserted against the cervix.  it caused me to go back into active labor having contraction every four minutes.  at this point Jason and I had been up for over 48 hours.  we were both, literally falling asleep between contractions.
my contractions were all down low, and quite a bit in my back so Jason spent every contraction rubbing my lower back and telling me I could do it, or encouraging me to breathe. he kept the peaceful music playing and diffused an essential oil to help me relax.  by late that afternoon, we were both exhausted, and I wasn't sure how much longer I could make it.  the doctor checked me and I was at a five.  not great, but still progress.  i tried to focus each contraction on opening up.  a few hours later i felt some pressure so the doctor checked me again. i was at a five still and 80% effaced.  asher had moved down (hence the pressure i was feeling).  i started to cry.  i told Jason i couldn't do it.  i was exhausted, in pain, having blood drawn every couple hours (often during contractions), and my mouth was like a dessert from not being able to have anything to drink.  the worst part for me though was that i couldn't move around because i had to stay on the magnesium and multiple other things at this point.  i periodically rolled from one side to the other.  laying on my back made contractions worse because so much of the contraction was focused in my back.
at this point, someone explained that the magnesium I was on causes the smooth muscles to relax.  therefore, with every contraction I was having, the magnesium was fighting against it.  I was feeling extremely overwhelmed, and defeated, and asked for something to help with the pain.  the med they gave helped a little, but didn't last long.
i still wasn't dialating any more.  i finally just asked for an epidural. the first doctor i saw when i first arrived had encouraged me to consider it anyway because it can help bring blood pressures down.  Jason and i were both relieved when it kicked in, and we could rest.  my sodium had come up enough that they started a very low dose of Pitocin as well.  for the next little while i labored and let my body do all the work.  after about thirty minutes, the epidural stopped working on one side.  so while the pain wasn't as intense as it had been, i could feel the contractions.
at this point, people started to rush in every third or fourth contraction because asher's heart rate was dropping. they started by putting in an internal monitor for contractions.  they also used it to put a little more fluid back around asher.  they put an oxygen mask on me, and at one point had me get up on my hands and knees in hopes of taking the pressure off of him during contractions.  it worked, but i couldn't stay like that long term because i couldn't feel my legs.  they eventually put an internal monitor on him to follow his heart rate as well.
i was at eight centimenters, and decided to focus all of my energy on trying to get my body to open up again.  after a few more contractions i started to feel the pressure to push.  the doctor checked me and i was at nine.  asher was at a +2.  we just needed that last centimeter so he could come out.
but, his heart rate continued to drop. i was getting nervous for him.
after a few more contractions, the doctor said, we have to get him out. we were wheeled into surgery for a C-section.  they gave me a spinal block, but like my epidural, it didn't work.  i could still feel quite a bit.  so they had to put me completely under.  Jason couldn't be in the room as a result.  i remember them putting the mask on my face, but that's it.  i didn't hear his first cry when he was born.
when i woke up in recovery, there was a nurse checking my fundus to make sure it was contracting.  however, the epidural and block hadn't worked.  they couldn't give me ibuprofen because of the magnesium.  they couldn't give me Tylenol because of the liver failure.  and, they couldn't give me narcotics because i had, had a spinal block.  i'm not sure what i said to that nurse but i know i grabbed her hand and moved it away from me multiple times.  while i was still trying to wake up, the neonatologist came in and told me something.  i have no idea what he said to me.
eventually i got wheeled back to my room, and Jason came in.  i started to asks questions.  how big was he?  was he okay?
3lbs 13oz.  17-1/2 inches long. born at 6:43. he was okay, in the NICU and on c-pap.  he showed me a pictures, although i was having a hard time keeping my eyes open and focusing.  he told me his parents had come and gotten to see him.  i started crying because they got to see him before i did.
he told me about the nurse taking the camera to get pictures when they got asher out, and how when she walked by with him, he started to cry. 

i had to be on magnesium for another 24 hours after delivery.  i still wasn't allowed to walk.  and i wasn't even allowed to go see him until i had been out of surgery for 6-8 hours.  so at about two a.m. i got wheeled to the NICU to take my first look at my son.  he had the c-pap mask on, and was just so very tiny.  in those final 24 hours of magnesium, my calcium also dropped, and they had to give me i.v. calcium after I was done with the magnesium.

I learned from different doctors and nurses over the next few days that asher's small size was likely cause by a combination of things.  first of all, his two vessel cord did not enter the placenta like it was supposed to, but instead he had peripheral cord insertation (about 10% of umbilical cords don't insert into the placenta as they should).  also, umbilical cords are surrounded by a jelly like cushion called Wharton's jelly. this helps protect the cord from completely collapsing if there is pressure put on it.  asher's cord had very little of this jelly, and it's the reason he went into distress during the end of labor (something would compress the cord during the contraction, and it would close off blood supply instead of being able to hold up to it like most cords can).  and lastly, while I haven't researched it a bunch, HELLP syndrome and pre-eclampsia are often something that is going to happen, and is determined by the way the blood vessels formed in the placenta. so from the get go it's likely that the syndrome lurking below the surface was hindering things.  all of these things meant that asher did not grow like he should. 

as it turns out, my body might just be a lemon.  if we were to get pregnant again, i would be at very high risk for HELLP syndrome.  but, we have already decided that we are completely unwilling to take that risk.  i was extremely sick, and going down hill fast during labor and delivery.  had asher made it closer to term, he likely wouldn't have lived.
while i wouldn't say i'm happy i developed HELLP syndrome, i will say i'm thankful that it happened when and how it did because it likely saved my son's life.
i am on the mend.  he's doing great. he's just small.  and i will forever remember this time as one where my husband was above and beyond amazing.  i have likely thanked him 100 times over for how great he was during labor and delivery despite understanding more of what was going on, and knowing that at some point he sent a text to some people telling them he was scared i was going to die.


meeting papa

on c-pap

hanging out with mama this morning.