Monday, December 30, 2013

2013 In Review: Surprise, Surprise

Today at the grocery store, the youngish guy who was checking out my groceries casually asked, "So are you ready for the New Year?"  My response was a slow, calm, "sure....?"  I am a person who likes to really reflect and prepare for transitions.  2013 has given me no chance for that.

I began this blog one year ago.  In the beginning, it was titled "Life Less Ordinary", in reference to a song I love by the band Carbon Leaf.  I wrote a little about our desire to live a life that was extraordinary in a mundane world.  And then this year happened...suffice it to say, I changed the title because I am actually ready for a little LESS excitement!!!

One thing I've come to realize about myself is that I both love and hate surprises.  I am generally a planner.  I don't like things sprung on me last minute.  However, if someone has a gift or a fun activity planned, it is all the more sweet when it is given as a surprise to me.  But since I am a planner (read: control freak), I am all that much harder to give even pleasant surprises to.

So after all our struggles with Mr. Boo, I said over and over that we wouldn't have any more children.  In 2012, I ate my words when I was made aware of my husband's deep desire for more kids.  I prayed it through and felt a peace about trusting God and moving forward.  We tried and tried to get pregnant. It just wasn't happening. At the end of 2012, we decided we'd give it one more month.  As January of 2013 hit, we were waiting to see if our last try worked.
The boys at the end of 2012

A few weeks in, the thing that happens to tell you that you aren't pregnant began to happen to me.  I broke the news to my hubby. That day, we sent an email to our adoption agency and inquired about beginning the process to adopt. We were a little sad, but both sort of ok with finally closing that door.

But a few days later, that *thing* wasn't really continuing.  I decided to take a pregnancy test just in case (I had several, why not waste one?).  I sneaked into the bathroom while my husband was getting ready for work, and took it to the other bathroom to take it.  I went to my bedroom to wait, with the test in hand.  I sat down alone on my bed, and glanced at the test.  Two lines.  TWO LINES.  Two lines means yes, I'm pregnant, right? I looked at it a hundred times and then I started laughing. Out loud.  Not just chuckling to myself- actually belly laughing.

God found a way to give me a good surprise.  Me, with my charts and dates and times and plans. I was reminded of Sarah in the Bible, laughing about getting pregnant with Isaac. I was tickled pink that God had not only blessed me with a baby, but had surprised me in the process.

So we made plans to announce our new addition, and we took this picture.  We delivered it to family and friends.
photos by the lovely and talented Dansare Marks

But then, the very next week, I had signs I was losing the pregnancy.  I had to wait one whole night to go to the doctor, by which time I was convinced I wasn't going to have a baby anymore.  My husband and Boo came too, and we went in for the sonogram. I was wondering why God would go to the trouble to give me this awesome surprise only for it not to work out.  But I was also resigned to whatever was supposed to happen.  I felt in my heart that there would not be a heartbeat on the screen when I got in there.

The technician put the sonogram thing on my belly and I was right.  There wasn't *A* heartbeat.  There were two.

I saw it right away. Two black circles.  Two embryonic sacs.  I shot a look up to the tech and she read my mind and confirmed it. "Yes, there's two."  I said, with tears starting, "Are they alive?"  She found two strong heartbeats right away. She explained the bleeding I was having was most likely from the "overcrowding" in my uterus.

Another HUGE surprise.  A huge shock.  Biggest surprise of my life.  I actually cussed  (sorry, babies).  I grew up in a family of four kids, and the thing I have said most in my life in reference to that is "I will never have 4 kids."  My mom thinks this is hilarious.

Two huge surprises, right off the bat. And our announcement picture had to be edited!

The final surprise was when we went to our 20 week sonogram. I had studied up and prepared so I would know what I was looking for.  The tech began the sonogram, and right away, I saw it-  two legs, and the classic look between them that meant one more desire of my heart was coming true. One that I really hadn't even had to courage to hope for. I said, "Oh! That's a GIRL!" And the tech confirmed it.  I asked if that was baby A or baby B.  She said it was B.  I also saw Baby A and knew he was a boy, which was exactly what I wanted..  So Baby B- my one and only girl- most likely wouldn't be here if God hadn't arranged for those two eggs- instead of one- to be released and to give us two babies at once.

Maternity photos by the also lovely and talented Ally Browning

So we began 2013 with two kids- now we have four.  We began with a house full of boys- and now we have, well, a house still full of boys, but I did get one girl for my team.  My husband says now it's close to even- with the girls still holding the advantage!

Many other changes happened this year- but they mostly revolved around a twin pregnancy, two babies being born, and all the other medical stuff I detailed in other posts. Son 1 is in First Grade now, Mr. Boo started preschool and is (*gasp*) riding the preschool bus there.  I quit my two part-time jobs to stay home with these babies.

34 weeks pregnant with twins.  Bigger than a house. 

I delivered the twins via C-Section at 37 weeks in September.  Thankfully, there were no medical surprises or complications.  It went well.

So here we are.  I have no idea how it happened, but I have 4 kids.  I don't think I'm exaggerating when I say this was the most crazy, surprising, amazing, change-filled year of my life. And to be honest- I am still totally overwhelmed with the idea of being a mom to four kids.  I know it's only by God's grace that any of us will survive.

So as 2014 starts, I am done with the idea of our life getting "Less Ordinary."  I am ready for some mundane.  I am ready to get into a routine and not have any major shocks.  I know that's not guaranteed and that's not how life works. I am just saying I am not particularly asking for it this year!

Holy moly, I love my Fantastic Four!!!
So Welcome, 2014.  Let's make this the most boring year yet!!! :-)

Thursday, December 12, 2013

The Virtual Motherhood Subculture: aka "That's not who you are"

There is this timewarp in our house- from the kitchen (the epicenter of activity) to the car in the garage.  No matter how much I've planned ahead and organized things, somehow it takes our family anywhere from 20-45 minutes to move between those places when we have to go somewhere.  Someone described it once as herding cats. Kids can't get coats, backpacks, lunchboxes, stuffed animals, blankets, snacks, drinks, WHATEVER together fast enough and they wander off on the way to the destination.  I know you know what I am talking about.

My 7 year-old is especially distracted.  I say to him a hundred times, "Go to the car. Go to the car. GO TO THE CAR."  Do not pass go. Do not collect $200.  He has real and challenging focus issues, and we spend a lot of time working through them.

So when I read this post about not hassling our kids to hurry up, I of course went into standard mommy guilt mode.  However, I immediately knew in my heart that this did not apply to us.  I did not feel frantic or like I was ignoring the beautiful way God made my son.  There are real timetables in life and no matter how much time I allow, there is distraction and dawdling. It also occurred to me that 75% of the places we are trying to go so quickly are FOR them, so I think it's reasonable to ask them to go there in a timely manner for the whole family.  So while I appreciated what the blog writer had to say, I did not plunge into a dark vat of guilt and vow to never say "hurry up" again.

That day, probably 25 of my Facebook friends re-posted that, plus I got it in email form from a few others. Again, I appreciate that it resonated with some people.  It still didn't stir me.

Over the next few months, other posts about motherhood emerged.  This one about bedtime taking a long time.  This one about "bullying" a child.  Again, great articles. Great writers. Women desiring to love their kids better.  All wonderful things.

The rate at which these things got reposted in all the social media platforms astounded me. Many of my friends comment things like, "This is me." Or "I am guilty of this." Or "Something for us all to think about." And it bothers me.  Here's why:

I know most of you.  I know how much you love your kids.  I know you spend most of your free time with them.  If you're not with them, you are thinking about them.  Or talking about them with your friends.  Asking deep, hard questions about how to love them better and how to help them.  You barely sleep.  You pray and pray. Your deepest heart's desire is that your kids would know beyond a shadow of a doubt that you love them and you have done everything you can for them.

So here is what I want to say to you: Please, read these posts and take what you want from them.  And then put them away.  Don't label yourself as a "bully" or a bad mom because you "slip" and tell your kid to hurry up when you have given them every chance to get things done in a reasonable amount of time.  Or if you put your kids to bed sort of early to visit with your spouse.

Stop the guilt.  Don't put yourself in the box.  That isn't who you are.

Loving your kids looks different almost every day. Some days it looks like putting your 4 year-old in time out while they scream so you can teach them patience and to speak respectfully to people.  Some days it's taking all day to walk around the park with them.  Some days it's putting them to bed fast so you can connect with their father.

These women write these posts about themselves- their lives- their mistakes. And while they can send good messages and reminders to all of us, their conclusions for their kids and family are not and SHOULDN'T BE the exact same as yours. They certainly shouldn't weight us down with more guilt than we already have.

And here's the darker thing happening.  We read these things, take them as gospel truth, and then use them as yet another way to judge those around us.  We hear a mom in the store telling their kid to hurry up and we think, "Oh, she doesn't treasure her kid the way I do."  Or we observe a mom sternly disciplining her kid and think, "I bet she's a bully all the time to that child."  We pass things on and say, "You should read this."

We need to step back and see the whole picture. Of ourselves and each other.

So yes, I tell my kid to hurry, quite a bit. I could wake him up at 4 AM and he still wouldn't be ready for school by 8:00 without my prodding.  We are working on it. I don't scream in his face or think I'm tearing up his heart by saying it. One day he will hold a job and hopefully be on time because of the skills I am teaching him.

So please- read these posts and sure, repost them if you want. But don't tell yourself you need to feel more guilt or make arbitrary statements about your life based on them. Take whatever message speaks to you and appreciate it.  Don't worship it or tell yourself you are a bad mom.  Don't be pulled into the dark subculture we are creating that tells a part of the story online and ignores the reality of the big picture of our hearts.

Because I know you- and that's not who you are.

Wednesday, December 4, 2013

You're Listening to the Wrong Christmas Music...

So, several years ago, I had heard a song on the local Christian radio station called "Nothing to Say" by a fellow named Andrew Peterson.  I liked it. A lot.  So, as we often did back then, I ordered the CD it was on.  I also liked that a lot.  So I ordered a few for Christmas and gave one to my sister #3, who we now call Aunt Kiki around here.  Anyway, she also liked it a lot.

Ok, to be truthful, we were sorta obsessed.  

See, we are English/words/grammar/phrasing people.  We love the way you can put words together and create amazing pictures.  And since I am also a vocal music person, I loved the way Andrew's smooth, lyrical style of singing went perfectly with the way he crafted words together into stories.  Kiki and I would email (not text- again, this was the dark ages, people) lyrics to each other through the day.  So for Kiki's birthday in March of 2008, I made her a certificate promising her tickets to an upcoming live Andrew Peterson concert.  

Kiki and me back in the day (ok, she looks just the same)
Unfortunately (or so it seemed at the time), the spring concert I wanted to take her to did not work out for her schedule.  The next one listed on his website was in December, about 3 hours away from us.  So I bought the tickets as soon as they came available and put it on the calendar.  When I got the tickets in the mail, I was disappointed because it said, "Behold the Lamb of God tour, with Andrew Peterson and friends."  I thought I had mistakenly bought some sort of Christmas Pageant tickets where maybe they'd play Andrew Peterson songs or something.  But anyway, when the time rolled around, we trekked up to Nebraska in the dead of winter, ate at Valentino's (yum) and drove to a church to see whatever this was going to be.

Kiki pointing out our favorite Valentino's in Omaha

You know that feeling when you suddenly realize you are in the middle of something totally amazing, and you didn't even plan it?  That happened to me that night. I was instantly glad we hadn't been able to go in the spring because I doubt we would've tried so hard to get to this concert. 

The Behold the Lamb of God tour involves Andrew Peterson asking some of his closest friends, who also happen to be amazing musicians, to join him on stage.  The concert is in two parts.  The first part is called The Round and each musician takes turns sharing some of their personal music.  This is how I first heard of Andy Gullahorn, Jill Phillips, Andrew Osenga and Ben Shive.  These Nashville-based musicians brought so much heart to what they were doing, and I felt so privileged to "meet" them.  I've since tried to keep up with everything these guys put out, and they are awesome.  Checkout  their music (and other really cool stuff) here. And actually, Jill and Andy (who are husband and wife) have a beautiful Christmas album themselves.  (And to be truthful again, if my voice could sound like anyone's in the world, it would be Jill's.  Love her.  As someone else once said, she could sing the phone book and I'd listen to it). 
The whole group starting the Behold the Lamb part of the show

When the second half started, the actual "Behold the Lamb of God" part, I really thought I was going to just burst.  It was amazing.  Behold the Lamb of God is set up as a sequence of songs that tells the story, beginning in the Old Testament, of the coming of Christ. There are many people on stage, and all kinds of instruments.  They all work together to create this sort of sermon in song. It is full of imagery, and it invites you into the magic of the Christmas story in a way I'd never heard before in song.  Words are failing me even now as I try to explain it to you.  It is simultaneously simple, complex, funny, sincere, deep and sweet.  

Suffice it to say, we were totally in shock and awe of the amazing honor we felt to have "discovered" this group of people, this musical work, and really the new way we could experience the Christmas story.  

So like dorks, we stuck around after the show to meet Andrew and a few of the other guys. Andrew was totally gracious and kind as we fumbled through trying to tell him how we ended up at the show and how much we loved it.  We even met him again a year or so later at a different venue, and he at least pretended to sorta remember us.  He's a super nice guy, really.  
Us with our new friend, Andrew

Here's the point of this long story.  For us, it isn't Christmastime until we've either attended a Behold the Lamb of God show (they do them every year in a variety of places), or pulled the album out and given it several listens.  (one more confession- we listen to it year round, really, but we do text each other lyrics when Christmas rolls around).  It sets up our hearts for the season. 

You have to get this album.  I'm serious. I would never steer you wrong.  Please go and  buy it if you don't have it, and support these people who are some of the good guys, making truly good music from their hearts and making our world a more beautiful place.  (how many times in this post have I said beautiful? See, I'm not as good with words as I claim).  If the Behold the Lamb tour comes near you, go.  For the last several years, either new babies have kept us from going, or the tour just didn't come close enough.  But you can bet we'll be there as often as we can.  

Here's a link to one of the songs to get you started. But seriously, buy it. Then you can come back here and tell others about it.  I cannot say enough how much it will enrich your season.

One last funny story.  My kids have gotten so used to listening to Andrew Peterson in the car that once, I got a new Burlap to Cashmere CD (also very good), and my two boys argued back and forth that it HAD to be Andrew Peterson.  Because usually the "good" music was him or his friends.  They always knew if I just had the radio on or whatever, because it wasn't good.  I can't wait to take them to a concert soon! 

Have a great Christmas season.

***ONE MORE IMPORTANT THING! The title of this blog is a total rip-off of a song I heard Andy Gullahorn do at one of the Behold the Lamb shows I attended during The Round.  It's called "Someone to You."  Listen to it here and then buy it here. ****

Saturday, November 16, 2013

So...what do I do with a happy baby?

I’ve been promising this blog post for a while, and I am so happy to be writing it now.  I’ve told you how the twins started out on the same road as Mr. Boo with terrible reflux.  I promised to not lose my mind this time.  And other than being pretty tired, I can say that God has kept me in a much better mental/spiritual state than where I was with Boo at this stage.  I am grateful for that.
My twinkies

And there is more! Oh man I am almost giddy writing this.  Let me slow down.

The twins were doing bad.  Bad bad bad. As I told most of my friends, each day was worse than the day before.  So one night, I was changing Honey Bunny’s (our name for our baby girl) diaper, and there was blood in it.  I kinda ignored it.  I knew from my past experience that blood usually means some kind of intolerance, but I also knew she’d been sorta constipated, so I thought it was just from that.  But two days later, she started projectile-vomiting. I’d never seen puke like that.  I’d be feeding her in my arms, and after a few ounces, she’d erupt like a fountain.  If I was holding her up, it would shoot out several feet.  I immediately thought “pyloric stenosis”- google it if you don’t know- so we went to the doctor.  They scheduled an upper GI for the following day, and put her on just Pedialtye for the day.  

After she projectile vomited every feeding of that, and started showing signs of dehydration, she was admitted to the hospital.  She got some fluids, an immediate Upper GI, and blood work.  The Upper GI showed she did not have pyloric stenosis, but the radiologist commented on how bad her reflux was- he even showed me on the screen. We were only in the hospital for part of the day/evening and she started keeping food down, so we were discharged.  ON THE WAY OUT THE DOOR, she pooped, and there was a ton of blood in it. The nurse took a picture on her phone and texted it to our doctor (oh how I love technology!).  She said since she just had the tests and they were normal, we could go home, but if she had any more blood I needed to call her.  

We went home. Guess what happened. Two more bloody stools within a few hours.  I called. The doctor sent us to Children’s Mercy in KC immediately to check for intussusception (again, google, my friends).  After a sonogram, more blood work, and stool samples, the consulting GI specialist determined she had severe Milk/Protein Intolerance (MSPI).  We were given a can of fully hydrolyzed formula- ours is called PurAmino- and given a follow-up appointment.

Miserable babies with Big Brother Boo
Exhausting few days.  So we got home, and guess what.  Yes, Sammy Brown (our boy twin’s nickname) followed exactly the same way.  Projectile vomit and bloody stool.  These two. I tell you.

We hesitated for a few days about the formula. After all, they were already on a partially-hydrolyzed formula, so I thought that was enough.  We endured some really hard days waiting for our specialist appointment in KC.  

When we got to that day, we had a ton of questions, and the doctor very factually explained all the ins and outs of MSPI and why he thought that was the source of all their problems.  Basically, their little GI tracts could not deal with the larger proteins in regular or partially-hydrolyzed formula, so their entire systems were irritated, probably with large sores that bled as food passed through, and it was giving them not only terrible reflux, but abdominal pain and irritation.  He claimed the formula was the only answer. In fact, he said even their reflux would resolve if we’d use it. 
Boo showing the babies the ropes at the GI clinic 

Yah right, I said.  We wavered for another few days and then finally said we had to try it. We started using the new formula and nothing else.  The doctor had said that we’d see improvement in one week, with totally new babies in two weeks. 

Yah, right. YAH RIGHT! Anyway, we went for it.  And I kid you not, days 4,5 and 6 were the worst days we’ve ever had.  On day 6 I really almost lost it. They screamed, cried, fussed, arched, told me they hated life ALL THE LIVELONG DAY.  I really almost had to eat my previous post.  I had some words with God that day.  He spoke to me with love, I tell you, but I really still thought my life was almost over.

Day 7: I woke up, picked up Sammy Brown, and he curled up against my body and cooed.  WHAT? He had never done this- he was usually hard to hold because he was arching and fussing and uncomfortable.  I fed him.  He smiled. He fell blissfully back to sleep. I laid him down and he SLEPT.  WHAT??? Honey Bunny woke up. SAME STORY.  WHAT WHAT WHAT.
Happily chatting in their Rock N' Plays

They really got better.  The doctor was actually right.  They started doing amazing things they’d never done before, like playing on their backs on the floor happily.  They laughed. They made happy noises.  They ate contentedly.  They napped. 

So here we are, about 2 weeks out from starting the PurAmino, and I tell you what- I am still in shock.  They have their moments, even a few rough days, but it is NOTHING like before.  They are still refluxing, but it doesn’t burn so much. I have happy babies. So now my biggest problem is this: What do I do with a happy baby? For the first few days, I sorta freaked out.  I could set one of them in a bouncy seat and go to the bathroom.  Or take a drink of water. Or breathe.  I think I seriously danced around my kitchen a few times.
So this MSPI thing? It’s real and it’s serious.  This won’t be popular for me to say, but we were told that probably why Boo never got better is because I nursed him. I had eliminated all dairy and soy from my diet, but not we’ve been told there is really no way to get it all out.  If my kids are that sensitive, they would react to even the smallest amounts of dairy and soy that came from me.  And for that, my Baby Boo suffered.  That stinks to know that.  I know the breastfeeding people would say he got so many benefits from my milk that it’s worth it.  Maybe so.  But I can’t explain what it means to me now to have a happy baby.  I wish we could’ve enjoyed Boo like that.  But here we are.  We know now.
All Four Monkeys

The other big looming issue is that this formula is crazy expensive.  We estimate it could cost us $800 a month to feed these two.  We are working on a lot of ways to get help with this, so will you please pray for us?  We are working with insurance to try and get it covered (right now it isn’t), and applying for some grants that help people with non-covered medical expenses.  Please pray that in one way or another, we get that help. 

Honestly, though. I am not sure there is any price too high for us to have these happy kids. And considering what we will possibly save, compared to what we spent on hospital stays, tests, medicines, etc, for Boo, we will come out ahead. 

Guys, I am so grateful. I can’t find words. Thanks for your concerns and prayers for us.  I am just going to take some time and enjoy this, and try to thank God as much as I cried out to Him.  In this case, this time, I feel rescued.  It feels good. 
Sammy Brown thinks so too!!! 

Monday, October 7, 2013

When The Demons Come Back

"You could no more kill the darkness than you could raise the sun, and the night was cold and black like the barrel of a gun. And I remember the tremble in the words you spoke as you balanced there on the brink at the end of your rope. And you came so close to letting go." 
Baby Z and Baby S
 “You Came So Close”- Andrew Peterson

It started with the noise.

The groaning, throaty, gurgly noise. We termed it "griping.”  The real word is reflux. You can read about our experience with GERD in my previous posts. 

I had listened to it for months as Boo tried, without success, to settle the fire in his tummy, his throat, his whole little body.

It sounded like someone was squeezing his throat and choking him while his stomach tried to erupt through the tension. The sound meant sleepless nights, crying all day, bone-tired parents and an unhappy, fussy baby.  It meant doctor visits, blood work, tests, expensive medicines. For me, it meant a place of darkness where I was imprisoned and (at least in my mind) alone. A place where prayers went unheard, cries went unanswered, and desperation nearly gave way to hopelessness. It meant loneliness, worry, fear. For years.  Like the song says, at least mentally, I came so close to just letting go.  It is a place that I vowed to never, ever return to.

After years of battles, tests, procedures, medicines, we figured out the right combinations to end his suffering. He grew into a happy, wonderful boy. I thought I'd never hear the noise again.

But then along came twin pregnancy. Even with that, I told myself we wouldn't have to deal with it again. Surely, this time we'd be spared.  Surely.

Baby Z was 10 days old when I heard it. The very same noise. The very same face, body scrunched, legs pulled up. The struggle. The wrestling. 
Oh, so tired!
A few more days and it was confirmed. Z had reflux just like Boo. My peaceful, sleepy newborn transformed before my eyes into a fitful, miserable, uncomfortable creature who could not be soothed.

And then 3 days later, Baby S followed.
life is hard

That noise, it makes my stomach sink. It makes tears spring to my eyes.  It makes me feel this pit inside me- a deep, dull place of aching and fear.

I have told you the facts of what we went through with Boo, but not the emotional depth of my own struggle. My crying out to God- my pleading, then demanding, for healing. The endless days and sleepless nights that produced an almost-delirious, mind-torturing exhaustion that felt like it would end me.  The crying in the shower in the mornings- God, how can you expect me to stand up today? And the faith wrestling within me. Why would He not answer? I prayed and cried in every way I knew how- there was no relief.  

After months…years of that, a few good friends and the voice of God himself pulled me out of that self-made pit.  Yes, the circumstances were external, and really really hard.  Everything outside of me was truly suffering- my marriage, my friendships, my sick child, my older child, my house, my work, everything. But the inside of me was a self-made prison of darkness.  Finally, light poured in, joy returned, strength came in the form of realizing that God himself stood right beside me- carried me- in the weakest of my days.  No, He didn’t rescue me quickly or give me relief I demanded, but He never ever left me

And that writhing, struggling creature turned into a boy I have loved like I never knew possible.  I remember when we found out about the twins, I looked at Boo and said, “Yep. I’ll take two more of you!”  His real name is a tribute to a story in the Bible about hearts being turned back to God.  And that is what Boo and his struggle did for me.  I thought that was the end of that story. But it has happened again- the same struggle is staring me in the face.

So what do you do when the very same demons come back? When the noise returns and this time, it’s double?  What do you do with those demons who want to drag you into your pit and destroy you?

You scream in their face and refuse to be taken back.

I stood in church yesterday with my newborns and sang those worship songs at the top of my lungs.  Because this time I know, no matter how hard the external gets (and trust me, it’s hard again), the internal knows “It is for freedom that Christ has set us free.”  I will not be burdened again by a yoke of slavery. (Galatians 5:1). I will choose light, joy, hope, and wonder. I will snuggle fussy babies and feel the warmth of their skin and be grateful.  I will choose light. Hope over fear. 

And Baby Z? His name means “God Remembers.”  He remembers me and the previous struggle. I have not forgotten either.  I will not forget Him this time. 

We still need help and encouragement and I am praying for fast relief for these little sick ones.  But I know there is an end.  I didn’t know that before.  It wasn’t a quick end (even though people tried to tell us it would be- Boo is not “typical” by any means), and maybe it won’t be this time.  But we will come out of this.  We will come out of it with two wonderful kids added to our family, and stronger than we were before.  Not that it won’t hurt.  But it won’t destroy us.

The rest of the song from above goes, “So don’t let go, cause this I know; don’t let go, cause this I know for sure; So don’t let go- cause this I know…this I know for sure:  There’s Still Hope.”

I do know that for sure. 
More about our twins later...

Friday, July 26, 2013

Baby Boo Part Two

This is the second part of our history with Baby Boo, and his unusual issues.  You can read Part 1 here. 
Silly, happy kid...walked at 9 months, ran at 10.
Crazy.  Just crazy.  I know when you read some of this, you will think I am completely nuts.  That's ok with me.  Living it was crazy, too- and many times I questioned my sanity.  I do not blame you if you do the same.

So we'd struggled through some bad reflux, and finally had Boo a little more comfortable.  An entry in my journal from around the time he was 8 months said this:  "Right now, Boo is sitting on the floor playing.  He did it yesterday, too.  Not groaning or crying or barfing.  Not squirming in pain. Just playing.  And it's a miracle to me."  
Halloween- oh how he hated his doggie costume!

He still wasn't a good sleeper, but I told myself some kids aren't.  I had gotten used to little chunks of sleep.  He was still nursing strong and growing.  But around 10 months old, his sleep got worse.  He started waking up every 45 minutes.  EVERY 45 MINUTES.  He was still sleeping in our room at the time (we'd moved his crib into our room so I could be nearer to him) and I started just staying up to watch him.  

It was disturbing.  His arms and legs would jerk- first a wrist would flick, then a whole leg, then a shoulder.  Eventually he'd wake up and cry.  I'd pat him or hold him till he settled into a deeper sleep.  45 minutes later, it would start again.  He looked like he was having seizures or something.  I still blamed it all on his tummy problems.

I sorta ignored how bad his sleep had gotten  Seriously, by this point I hadn't slept more than a few hours straight in a day in 10 months. My judgement was off. And he was such a happy kid when awake, I was relieved by that.  

But at his 1 year check up, our ever-vigilant pediatrician asked about his sleep.  When I told her, she suggested we see a sleep specialist.  Who knew there was such a thing?  My first thoughts were against it, though- I thought I'd get lectured about letting him cry or the fact that I'd rocked him so much as a tiny baby.  But our pediatrician pushed me (have I mentioned I think she is a saint? I love her).  I made the appt, but actually rescheduled twice because I was a wuss.  I didn't want to get yelled at.

Finally, I met our sleep doctor.  When I explained his sleep routine, she immediately suggested a sleep study.  See, Baby Boo went to sleep, happily, on his own at a normal time. We had a bedtime routine, and he wanted to sleep.  He would play in his crib for a few minutes and then put himself to sleep.  There were no bad habits or things to break.  She said she had an idea what was going on, but wanted the study to confirm. The bad news was the waiting list was like 4 months long.  But she said we could call each day to see if they had cancellations.  I started calling the next day.  I am not kidding you- we got in.  This was a sign from God to me that this was what we needed to do

The sleep study itself was sorta brutal on both of us.  I'd seen Boo have IVs, blood draws, deep suction for RSV, Xrays, Upper GIs, etc.  But this was the worst so far.  He had to have around 60 sensors put on him with this cement-type stuff, all over his body, including his face and head. The even had to wrap most of his face up to keep the sensors in place- he looked like a mummy.  He cried through a lot of it.  And then the sensors were attached to wires- totally uncomfortable for anyone to sleep.  I was supposed to sleep in the bed on the other side of the room and not mess with him once.  My husband wasn't allowed to come- just one adult.  So we settled in for the night, but I didn't sleep much at all.  He did his typical waking up, and I tried to leave him alone, but his wailing made me pick him up several times.  It was fascinating at the same time because they monitored his breathing, heart rate, movement, brain function/sleep stages, noises, everything all night long.  And when it was morning, we had to remove the sensors- twice as bad as getting them on- and give him a bath to get all the rest of the cement off.  I describe all of this hear because I want you to know what a sleep study is like in case you ever have one.  It was not fun.

The nurse who'd been with us all night said she couldn't give me any real diagnosis, but she was shocked how many limb movements he had during his "sleep" phase.  She couldn't remember having one quite as bad.

So we drove home and waited.  It took about 2 weeks for results.  And when they called, they had a diagnosis: Periodic Limb Movement Disorder.  PLMD.   You can read more about PLMD here.   Basically it is the name for what I described- uncontrolled limb movements happening during sleep that may or may not wake someone up, but do result in fragmented sleep and other problems.

The cause is not known, but the treatment was easy: iron supplements.  Apparently there is a correlation between low ferritin (long term iron storage) in the brain and PLMD.  Something about Boo's little tummy did not properly absorb iron.  Stay with me...this is going somewhere....
Boo around the time of his PLMD diagnosis

We call the day we got this news "Diagnosis Day." And we still celebrate.  I was so happy that someone found a reason for what we were going through.

We started him on iron supplements, and were told it would probably take months for the iron to ramp up.  Maybe 6 months.  It ended up taking longer, but he did improve little by little.

At some point in this craziness, we switched GI doctors.  His 2nd GI specialist was a young mom, much like me, and she changed his medication right away.  She asked me to trust her.  I did. And she was right.  Even though he'd been happy on Nexium, switching back to Prilosec made him even happier and more comfortable.  It was all about the right dose at the right time of day.

One thing our new GI doc said really hit me.  We had to give his iron supplement at a time that was not near his Prilosec dose.  Iron needs an acidic environment to absorb.  When you use reflux meds, especially the class that Nexium and Prilosec are, the stomach becomes very basic- the opposite of acidic.  That's the job of those medicines.  But no acid, no iron absorption.

I am not a doctor. I have never done a research study.

But it clicked for me:  Boo had a messed up stomach, we gave him meds to shut off the acid, iron could not absorb.  Babies have iron stored for about 6 months after birth- after that they are still usually fine to get it from breastmilk, rice cereal, etc.  But if your stomach has an environment that has no acid, (we always gave his meds before eating, of course) absorbing and storing that iron is more difficult.

It totally seems like giving Boo reflux meds affected his ability to absorb iron.  Which led to him completely depleting his ferritin storage, which led to PLMD.

I wish someone would do a study on this.  I wish I could sit down with a doctor who cared about connecting dots like this.  If you know someone like that, please let me know.  I would've given him iron all along had I known.

I'll finish up the PLMD part of this and tell you that we eventually had to switch from the typical iron supplement (liquid ferrous sulfate) to something called Carbonal Iron.  This iron is carbon-based, making absorption even easier.  The bad news was it took till he was 2 1/2 to "cure" this.  The first night he slept all night was Memorial Day at my in-laws house.  I thought it was a fluke. But he did it then and he's kept doing it ever since.  (Other than waking up to puke sometimes, but that's another story...).  He still takes the Carbonal Iron.  He's still on Prilosec, so we figure it's a good idea.  And he has blood tests frequently to check his levels.
My shopping  buddy.  

*********BEFORE YOU RUN OFF AND GIVE YOUR BABY IRON SUPPLEMENTS******** Do not do this without talking to your doctor.  Iron is one of the most common poisoners of children- and it's the leading cause of poisoning deaths in children under 5. We keep ours in a child-proof box at the top of a kitchen cabinet.  I am very serious. Talk to a doctor and only give the recommended dose- never more.

I think I said this would be a two-part story, but I still haven't wrapped it up.  Hang in there for one more chapter.
My two adorable boys- ring bearer's for their aunt's wedding.  Be still my heart. 

Tuesday, June 25, 2013

Baby #2- My "Extraordinary" Child

Oh sweet baby boy.  Please tell mama what's wrong, and I will fix it.  I will do anything.  I just want you to get better.

This post will be mostly facts- listing out what happened when.  It's a lot. I still think it's sorta crazy.  

Baby Boy 2 came home from the hospital on December 23.  We started calling him Boo right away, so I'll use that name for him here.  I had a great delivery and was happy to no longer be pregnant.  He seemed like a normal newborn to me- but I had no real point of reference as far as taking care of a newborn 24/7.

We had a home nurse visit on December 24.  Boo had lost a lot of weight from the hospital- he was down to a tiny 5 lbs, 13 oz.  We had to start trying to supplement with formula, even though he was nursing around the clock.

I remember on New Year's Eve, we started calling Boo a "griper".  When I laid him down on his back, he'd squirm and fuss and even sort of crunch his abs up and whine.  We'd tell him to "stop griping." We sorta laughed about it, but apparently that's not normal for a 10 day old baby.  On day 11, our day started at 6 AM, and he griped all day, fussed, cried, screamed, and by the time I called the nurse line at midnight, he had slept a total of 15 minutes THE WHOLE DAY- no matter if I held him or put him down or walked him around or rocked him.  Not normal for a newborn.  The nurse said she had no listed protocol for a baby who didn't sleep at all- only for babies who slept too much.  I called our pediatrician the next morning and she saw us fast.  When I laid him on the table and he did the griping, she was alarmed.  She sent him for blood work.  We waited all day, and they called- results normal.

Trying to sleep- starting to "gripe" 

The next week was exactly the same.  No sleeping, all griping, crying, fussing. He'd arch his back and be really stiff when you tried to bend him in the middle.  We could hardly get him in a car seat. Nursing was terrible- he'd latch on and then pull off immediately and cry.  Feedings took hours, and he still wasn't really gaining weight. I called the dr again and she said it was time to do more tests. At 6 weeks, he was diagnosed with reflux.  He was started on Zantac.  I remember her telling me "most babies" would get over reflux by 4-6 months old, some would go on for a year.  I can't take a year of this, I thought.  She also said some kids don't respond to Zantac and he might need something stronger.

I think the Zantac helped for a few days.  Then it stopped.  They upped the dose.  A few more nice days, then back.  He was switched to Prilosec.  Again, maybe a week of relief.  We held him non-stop.  My husband had gone back to work, and I was left alone with a 3 year-old and a fussy, demanding, round-the-clock needy baby.  I saw friends with babies who'd sleep through church in their carriers.  Or hear all about babies his age who were "so hard to wake up" to nurse.  He never slept- I didn't have a problem "waking him up."  We couldn't even take him to church.  He was way to fussy to leave with anyone and I couldn't keep him with me in the service because he was so loud.

And when I say he never slept, let me be clear: this was not a behavioral thing.  He wanted to sleep- he was exhausted.  He'd pass out in my arms and wake up minutes later, crying from being in pain.  Laying him down just made him feel worse. There was no "sleep training" to be done. He was so uncomfortable, awake or asleep, it didn't matter.  He'd sleep a little in my sling- that was a good position for him, but just for like 20 minutes.

SIDE NOTE: At 6 weeks old, Boo got RSV.  He was very very sick.  He ended up being admitted to the hospital for 6 days.  I was a wreck.  Exhausted, worried, scared.  Parents of babies- take the RSV threat seriously, please.  He obviously survived.  But it was not a fun ordeal.  Hospital stay #1 for him. 

He had started arching his back so severely to get away from the pain that he couldn't even lay flat.  His muscles were developing incorrectly.  Our pediatrician recommended a specialist, and also said if he didn't get help soon, he'd need physical therapy for his arching.

At 11 weeks, we were sent to a GI specialist.  (I want to throw it in there that the day before his appt, my little sister was holding him at our parents' house.  She took him in the other room to rock him.  I found her in the nursery crying.  She looked up at me and said, "What's WRONG with him?" She had never been around such an uncomfortable baby, who squirmed and arched and fussed.  She thought there was something else neurological or something wrong.  That is how sad it was).  So we went to the GI doctor in KC. Ok, we went to his FIRST GI specialist.  This guy listened  to all the diet changes I'd made in my diet to help him, and all his symptoms.  He was nice, but he basically just prescribed Nexium for him and left.

So at 11 weeks old, we started giving him Nexium- we'd open capsules, measure 1/3 a capsule into a spoonful of applesauce, and try to feed that to a tiny little 3 month-old baby.  It was crazy. But he took it like a champ.

And about a week into it, he smiled.  Really smiled.  He sat on the couch, propped up with pillows, and giggled at his brother. I think he started napping for about 45 minutes at a time, which was like a dream to me.  We still had days when I had to walk him around all day in my sling to keep him from crying.  But overall, there was improvement.
Happy Nexium Baby

Around 5 months, he started sleeping from about 10PM to 2AM.  This was awesome.  He had also become a chunky monkey.  He got the hang of nursing.  It was going much better- still nothing like I saw my friends' babies.  But better.

Let me stop and say something here.  When people say their babies have "reflux", it can mean a lot of things.  We learned later that "acid reflux" and "gastroesophogial reflux disease, or GERD", were two different things.  Babies who spit up, or have a little pain, have reflux.  Kids who go on past 6 months and aren't fully helped with things like Zantac probably have GERD.  This is something that really needs a lot of management and is very stressful on a family. I remember sitting at a play group, which I tried to do for my 3 year-old, holding my griping, fussy baby, while this other mom's baby slept in the playpen for the whole 2 hours we were there.  When I explained that Boo had reflux, she said, "Oh  yah, my son has that too."  Uh, no he doesn't, I thought.  He might've had reflux, but he didn't have GERD.  
His Nana holding him, wrapped in his swaddler, trying to  comfort him.

At some point, Boo started having diapers full of mucous.  Our specialist decided he also had MSPI, which is Milk/Soy Protein Intolerance.  I eliminated all dairy and soy from my diet (plus threw away tons of frozen milk I had stored) and started over.  I will say this did help him.  I hated it,  but it did help.

Things were not easy, but we did start to feel slightly normal from months 6-10.  He wasn't a good sleeper, but I slept when I could.  I'd maybe get 4-6 hours of sleep in a night, broken up in chunks.  We took turns rocking him and we even had a routine where my husband would get up at 5 and rock him till 6:30 so I could sleep that "long" chunk before it was time to start our day.  We survived.

I read and researched and tried everything suggested to help GERD.  I always had a sneaking feeling that there was something else wrong, but I was trying hard to not be a hysterical mommy.

But while I was trying to not to be hysterical, I was exhausted, lonely, frustrated, worried, upset, and felt nothing like myself.  I went to work for a few hours a week, leaving him only with trusted friends who I knew would love him despite his fussy/no sleep personality. Other than that, my social life was nothing, my time with my husband was very limited, and I felt like Son #1 barely recognized me.  But I loved my little Boo, and was determined to help him.  For now, that meant holding him, nursing him, giving almost every ounce of energy I could to him, and fighting for more answers.

I titled this post, "My Extraordinary Child."  That's because at every turn, we were quoted statistics. Things like, "only 5% of kids don't grow out of reflux by 6 months."  Or "only 3% of kids are hospitalized for RSV."  No matter what the statistics were, he always fell on the "exception" side.  So we called him our exceptional child.  He likes to be different.  He is good at that for sure!

And this post, while factual, is painful for me to write.  Mainly because I can barely barely barely remember my cute, sweet, lovey boy at this age.  I was too tired. I was too worried. I was too desperate to find answers.  I won't say I didn't treasure it- some days went on for years, it seemed, and I tried to soak up the time when he needed me so badly.  But it wasn't enjoyable or fun or peaceful.  I am sitting here today, pregnant with twins.  And since the second the pregnancy test showed two lines, my prayer has been that we won't be on that road again.  It's genetic. And I haven't even told you the whole story.

But no matter what, this time around, at least I know a little more what I'm doing. And we survived it once. We can survive, and even thrive through it, again if we have to.

So we're here at 10 months.  I'll tell you the rest in the next post.

Thursday, May 9, 2013

Our History: Part 3

This post is long, and mainly about pregnancy-  my pregnancy with Son #2.  And it’s about expectations and judgments and grace.

So I was mostly home with Son #1 each day, and he was about 2 years old.  As I talked about in my previous post, he would’ve been labeled an “easy” baby.  As he was getting older, I was enjoying him more and more. I worked very part-time (about 10 hours a week), and when I was gone, one of my sisters watched him for almost no pay at our home.  Life was good.  We were very involved with our church, friends, and family.  We were back to almost feeling like we did “pre-baby.”

Then I got pregnant.

I got pregnant fast- we only tried for about 3 months. That blessing wasn't lost on me. And we were so happy to see the two lines appear on the test early one morning in April.  We planned a fun way to tell our families, and launched into plans for maternity clothes, a new nursery, and dreams of this baby.

Then a few weeks later, the morning sickness came.  The tiredness hit me like a truck.  The emotional out-of-whackness invaded my body.  No one told me about this part.

I had really only ever known one woman who had been sick during pregnancy.  All my other friends made it look so easy. Very little throwing up, if any, and they maintained their usual busy social lives, not to mention their cute pregnant bodies.  This was what I expected for myself.

I vomited so much and so violently every day that I broke blood vessels in my face, and my throat was raw.  I could hardly put food in my mouth without gagging.  I could hardly keep my eyes open from morning till afternoon naptime.

I felt nothing like my normal self. I felt alone. I felt physically beat up. Maybe this wouldn’t have been such shock if anyone else had told me this happened to them. But no one did, and I felt plunged into some sort of darkness.

In addition to the physical symptoms I was feeling came the beginnings of feelings of failure.  I couldn’t “perform” in my usual capacity.  I could barely get out of bed, let alone make dinner from scratch, design fun activities for Son1 , and be the best friend/wife/sister/daughter/employee/church-volunteer I could be.  And I beat myself up daily for it.  Sometimes hourly. Why could other women do it, but not me?

The choruses of “just hang in there until first trimester is over” and “it will all be worth it” started ringing out from everyone I knew.  I believed them.  But it didn’t make it easier when I had to pull over and barf on the side of the road. Let me also say, the “It could be worse” line also didn’t help.
This picture cracks me up because I thought I was smiling so big.   You can almost see in my eyes how terrible I feel.

I had a scare around week 11- and thought I was losing the baby.  It turned out to be ok, thankfully.  You’d think this would’ve been enough to get me into a better mindset. But I, in my selfishness, only said on the way to the hospital, “God, you  better work this out, because there is no way I’m doing this again.  If I lose this baby, we will not have any biological children.”  This was a dumb thing to say.  Ridiculous.  Thank goodness He has mercy on me in my stupidity.

So I waited and waited for it to get better.  Week 12…week 13….week 16….week 20. It only got worse.  And worse.  Even with medication, I threw up every day.  And I felt just awful.  Terrible.  I am not exaggerating.  I complained too much- this is true.  But I truly felt that bad all.the.time.  EVERY DAY.  And I felt like I was just a failure at life in general. I think the word I’d use for my emotional state would be “defeated.”

I had other small complications. I was put on a heart monitor mid-summer- I had to wear it day and night.  My heart had palpitations and raced constantly.  This just added insult to injury.  It was uncomfortable and annoying.  And all they found in the end was that I had “pregnancy-induced persistent tachychardia.” So that meant that, once again, my body wasn’t happy about being pregnant and was going to remind me in lots of ways- including by depriving me of sleep by the constant pounding in my head from my heart working so hard.
Me with two excited Aunts-To-Be, 26 weeks.

I wish someone would’ve told me I was doing a great job, and that growing my baby was the most important thing I could do.  This is not the message our American culture puts out.  Our culture says, “Keep going with your life as if it’s not changing at all. Work up until the moment your water breaks and do it with a smile. If you can’t, you’re a wuss or just not focusing on the positive. Also, look cute while doing it.”

We found out the baby was another boy.  I was happy about that. I was glad Son1 would have a brother. 
30 weeks

Finally- FINALLY- around week 30, I was diagnosed with gestational diabetes.  At first, I cried about this.  I thought it was another curse put on me to deal with.  But less than a week after I started on the diabetic diet, I stopped puking every day.  I had some energy.  I could hang out with friends. I could stay awake long enough to talk to my husband at night.  I could make dinner.  As I was getting larger, people would say, “Oh, I bet you just feel terrible.” And I would say, “Nope! I feel great!!!” I started doing ZUMBA classes around 30 weeks.  I went to an out-of-town concert at 37 weeks.  It was like a miracle. 

I felt magically cured.  This was probably my issue the whole time- or at least why 2nd trimester held no relief for me like it does for most women.  I finally had a reason why I had felt so awful compared to others I knew.  I had validation that something wasn’t right.  I wasn’t crazy or just weak.  This helped me a lot. 

And at 39 weeks, my water broke in the morning, we zipped off to the hospital, and 8 hours (plus one epidural) later, I had my sweet baby boy in my arms.  People do not believe me, but for me, labor and delivery was the easiest thing about being pregnant. 
In labor, post-epidural.  Happy.

So here are my points:

1     1.  Just like with children all being different, women all deal with pregnancy differently.  I read recently that the medical/scientific community had done this ground-breaking study that said people experience pain differently.  It somehow proved that if I break my arm, my actual feelings of pain and suffering are different than if you break your arm.  No duh.  But it’s taken this long for even the doctors to say “pain is relative to each person and our bodies all react differently.” It isn’t just a state of mind. My body did NOT like being pregnant, and it revolted against this intruder into its system.  So just because that lady down the street was mowing her lawn, doing aerobics, and heading up the neighborhood bake sale when she was pregnant doesn’t mean you’ll feel like doing that. And also- if you do have problems during pregnancy, please share them. I am not asking everyone to focus on the negative or complain- just be honest, so that women like me aren’t shocked when it isn’t all glowing and blissful joy all 9 months.
38 weeks- notice how I am almost the same size I was at 26 weeks.  The diabetes had caused me to puff up and gain lots of weight in my body. Through the diet, my own body slimmed down while the baby grew. 

      2. GIVE SOME GRACE.  Everyone has pregnancy issues- small or large- but if a friend tells you they feel awful, BELIEVE THEM.  Believe they aren’t being hysterical or over dramatic, and don’t think that they just aren’t as tough as you.  Just because you handled it a certain way doesn’t mean the other pregnant woman is dealing with exactly what you had.  It’s all different.  I was not only experiencing “normal” uncomfortable pregnancy symptoms, I had undiagnosed diabetes. I didn’t know this- I just knew I felt awful.  No one else knew either- and man, did I feel judged by people for being so sick and miserable.  I needed someone to encourage me, not chastise me for not being positive enough. Give pregnant friends some grace and mercy and encouragement.  And I don’t mean saying, “It will get better at such-and-such time”, because you don’t know that.  I mean tell her, “You are doing something so important and amazing for your family, and you just growing a person is a miracle.  Way to go.” Ask her, “What can I do to help?” Even just listening helps.

      3.  Let your pregnant-self off the hook somewhat.  It was my husband who finally said, “If I come home from work, and you, Son1 and the baby are alive, that’s ALL I expect of you.”  He didn’t care that we had to eat out more than usual, or that the house was slowly becoming a pit.  He didn’t care that Son1 watched more than his allotted ½ hour of TV that day.  He got it.  And you know what? Those days when all I could fix was a peanut butter sandwich and Son1 got to eat it while watching TV- from his perspective- best days of his life!!! So let it go.  You’ll get back to organic, fresh-baked wholesome foods and arts/crafts time soon enough.

      4. Get your heart right.  My heart was so messed up in this time, mainly from me putting my worth in what I could “produce” for my family and friends, and constantly falling short.  And honestly, from not having people in my life validate how hard it was.  All I got were shallow pep talks. This made me not a nice person to be around.  I did complain too much, and I did fail at times to recognize the miracle and amazing gift of Son2 growing inside me.  I can’t say I could’ve done anything differently- except this part.  I can’t say I could’ve “bucked up” or “put on a happy face” or “focused on the positive.”  But I could’ve gone to God and said, “Lord, I feel miserable. Please help me to see my life and my role the way you do, and to appreciate and treasure what you want me to.”  Instead of doing this, I felt like I was letting God down, along with everyone else in my life.  I am now confident He did not feel this way about me.
First meeting. Man, I love this kid. 

These things have taken me years- YEARS- to process and realize.  And while I wish the next chapter of our story went differently, I can tell you that’s not what happened.  Some of these themes continued.  I did have an amazingly cute baby to snuggle.  But this part of our story was far from over.  Stay tuned.