Monday, March 2, 2015

drowning.

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.'
'what?'
'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.


newborn

meeting papa

on c-pap


hanging out with mama this morning.

Monday, December 29, 2014

he is here.


because our children don't do things in any sort of easy fashion....
 


Asher Toviah arrived on December 27th at almost 7 p.m.  six hours from home.  via emergency c-section.  he weight 3 lbs and 13 oz and was 17-1/2 inches long.  he had some severe IUGR.  he was born at 36 and 1/2 weeks.  i'll write the whole story out at some point, but for now, he's in the NICU working on growing.  i'm recovering from a C-section.  we are six hours from home, and thankful for family who is caring for big and little. 

Tuesday, December 2, 2014

if you could do anything....

there's an age old question that comes around on occasion.  'if you could do anything in the world, and money wouldn't matter, what would you do?'  I used to think long and hard about this question, often feeling like a failure for not doing the great things that I would really like to be doing.
a few weeks ago, this question came across my path again.  suddenly, the guilt and feeling of failure was gone.  it was clear, if I could do anything, and money didn't matter, I would still be doing this. 
even on hard days, long days, and days where i'm vastly aware of being in a hard phase of parenting, I would still do this.  on days where I go to bed and wonder if anything I've done that day was right, or kind, or remotely resembled even mediocre parenting, this would still be what I choose.
it's not because it's glamorous.  I don't make any money for what I do.  I won't even throw out the (cheesy) line about getting paid in hugs and kisses.
it's only because this is where I know i'm supposed to be.  my great talents go completely unrecognized and unappreciated by those they are being poured out on the most.  the world may completely discount the value in reading 'dooby, dooby, moo' over and over again.  but, still, if I could be doing anything in the world, and money didn't matter, this is what I would choose.







Monday, November 24, 2014

hospital stays and littles.

shilo spent half of the first year of her life in and out of the hospital, and has had other short stays off and on since then.  our longest stay was three months straight.  i had lots of things i had to work through as a result.  Jason and i have talked through our emotions a million times.  as new layers come up, even now, i know i can go to him and talk it out.  i've also seen a professional counselor to work through some of the issues.
when you're three, the words to describe how you feel are limited.  no matter how much we talked with big during all of this, and how much freedom we give her to share her thoughts and fears, even now, almost three years later, her ability to completely and adequately share her emotions regarding all of this, are limited.  even seeing a counselor who is amazing, she still isn't able to put all of her fears into words.  they come out, just in other more subtle, and generally annoying ways.
so the last few weeks with big have been atrocious at times.  she goes from yelling and telling me no to being unwilling to do anything other than stand or sit right up against me, and tell me she loves me over and over again.  and then, doing the same thing with Jason.

turns out, that the idea of her mama going to the hospital, and her little brother being born in the hospital might just be causing her a bit of anxiety.  it took us a little bit to figure it out.  but, it makes sense.  her reference for hospital stays is half of her family being an hour and a half away, her parents stress levels being through the roof, and spending lots of time at other people's houses.
today, i sat down and had a conversation with her about what she thought was going to happen.  it's a tough road to navigate because while i can give her run down of what usually happens when someone has a baby, i cannot tell her that everything will be okay.  i cannot tell her we will be home in a couple of days.  i can't make any guarantees to her.  so i can just give her the basics of what to expect.
i have a call in to the hospital to see if we can walk through with her to show her where we will be, and what it's usually like.  but, to be honest, this is super hard.  there are no children books on how to help your kid navigate a 'routine hospital visit' when she has some ptsd from hospital stays.
at this point, i'll spend the next eight weeks telling her over and over what it will likely be like when i go into labor.  i'll reassure her about who will be taking care of her and little.  and, even then, she will continue to tell me things throughout the day like, 'i don't want tiny to be in the hospital' and 'i hope tiny doesn't have seizures.'  all i can say is, 'me too.'