My Phone

A couple weeks ago, my phone fell into the pool.  Well, it was sort of catapulted into the pool, accidentally.  When it still wasn't showing any signs of life a week after its accident, I declared it dead.

I loved my phone.  I probably bordered on making an idol of my phone (which seems sort of obvious, since I'm dedicating an entire post to a phone).  It's been my lifeline to the world for over a year.  I rarely talk on the phone - too much risk of a child crying in the background.  So I stayed connected to the world by texting and checking in on facebook to see what the rest of the world was doing.  It made me feel like I was still a part of everyone's lives... in a very virtual sort of way.

A sweet friend let me borrow her old phone while I waited to see if my Droid would survive, and the one I borrowed was similar to mine.  It did just about everything mine did, but it was different.  I'll confess - I cried - more than once - over not having my phone.  I felt absoluely ridiculous.  IT'S JUST A PHONE, for pete's sake.

A sweet, sweet someone, who must have understood my grief over the phone better than I did at the time, replaced it for me.  This dear someone found a pre-owned Droid X on ebay and had it shipped to me.  Yes, I cried.  I think this person has no idea HOW MUCH that gift means to me.

And now that I have the electronic love of my life back in my hands, I know why its 'death' was so difficult for me.  Since July 3, my world just feels like it's been completely turned upside down.  Nothing is the same.  Waking up is different.  Interacting with my children is different.  Feeling Elliana kick is different.  Being with and talking to people is different.  Even watching tv is different - I can no longer watch any kind of drama - I cry too easily (insert roll of the eyes here).  Eating, sleeping, sometimes even breathing - it's all different now.  My phone, though, is familiar.  It's the same.  It does what I tell it to do, what I need it to do.  I know where to find things on it.  It's a piece of plastic (or metal? or both? who cares.) that feels familiar in my hand.  And at this particular time, when everything else in life feels so different and upside down, I needed something that was familiar.  Old.  From before July 3.

I feel like I sound completely ridiculous.  I probably think way too much.  :-)

The New Normal

I think today was just about as close to normal as I'm going to get.  At least for the next several months.  I had things to do, places to be - and I did them.  Ran a couple errands, participated in a meeting (without crying), and even answered a stranger's question about when my baby is due (also without crying). 

I proved to myself today that I can go through the motions of life.  I won't be completely useless.  I can take care of my family.  I may not do a great job of it - in fact, I might do a pretty lousy job of it.  But the kids will be fed, and they'll (probably) have clean clothes to wear.

But - I think I've written this before - this feels like such a lonely place.  What goes on in my heart and thoughts throughout the day feels so disconnected from what my hands are doing and my mouth is saying.  The lady asked me when my baby is due, and my mouth said, 'The end of November.'  A small smile on my face.  My heart, though, just felt like it was breaking all over again, thinking about what the due date means.  At the meeting I attended, someone made a comment about a funeral dirge.  And my thoughts went straight to the (possible) funeral in my future.  My heart is so shaken with the dismal future of my unborn daughter.  She is always on my mind, even if it's not evident to anyone else.

As heavy as this is most of the time, I'm trying to enjoy her.  Paying close attention to her kicks and punches.  Being conscious of (but trying not to obsessively worry about) what I eat and trying to make sure I eat enough.  Talking about her with the kids.  Pausing to look at the sweet little shoes a friend got for her. 

Jason just brought home some chocolate iced glazed Krispy Kreme donuts.  I think Elliana and I have to have one.  Chocolate's in her blood - she IS an Odell girl.  :-)

A Summary of the Last Three Weeks

Jason and I both think that we're ready for people to know about what's been going on with us.  This post is a brief explanation of what's happened over the last several weeks.

Three weeks ago, Jason and I went to our 18-week ultrasound and found out that we'd be welcoming a little Lindegren girl into the world in a few months.  I was THRILLED, and Jason was fretting over becoming a sucker to *another* girl.   :-)

Our excitement turned into fear once the doctor came in and told us that she had some concerns about our baby girl.  We went straight over to the hospital for a second ultrasound with a specialist, who confirmed our doctor's concerns. 

That day, July 3, our world was turned upside down.

Since then, we've had several more appointments and tests.  Our daughter has been diagnosed with a form of Trisomy 9, a very rare chromosomal disorder.  The prognosis is not good.  The doctors believe that our baby will not live very long after she's born. 

The next four months, which should be full of anticipation and excitement and preparation for a new baby in the house, feel like they will stretch out for an eternity.  Only because we have no idea what this is going to look like.  I guess we're trying to prepare for what the doctors have told us, but how in the world do you prepare to say goodbye to a daughter you've never met? 

I think we both have a small shred of hope - that maybe it won't be as bad as they say it'll be.  Maybe she'll live, and maybe she'll just have some special needs.  We just have no idea.  All we know is this:  the doctors have told us that this is bad, but God doesn't have to submit to what the doctors say.

We love our baby girl, and we'll care for her as long as she's on this earth, even if it's only for these few months in the womb.

More details are in previous posts.

The Days That Changed Me

I think there are days in a mom's life that just change you forever.  Not necessarily the day itself that has much affect, but the event or events of the day.  Some days are extraordinary, celebratory days.  Some are days full of pain and heartache.  I, like many moms, have had both.  It seems like the painful days outnumber the celebratory days, probably just because I approach life from a fairly pessimistic point of view.

The days on my heart's calendar...


*January 4, 2002 - the day we found out there was a mother looking for an adoptive family for her unborn son (Elijah).

*April 4, 2002 - the day Elijah was born.

*April 11, 2002 - the day we first held Elijah.  I became a mommy.

April 17, 2002 - the day we had to give Elijah back to his birth mother.  The first time my 'mommy heart' broke.

*April 18, 2002 - the day we got Elijah BACK. 

*May 3, 2002 - the day Elijah was 'ours'.  We'd never have to fear giving him back to anybody.

*April 6, 2006 - my first (shocking) positive pregnancy test.

April 24, 2006 - the day we lost our first biological child, Zachary.

October 23, 2006 - the day we lost our second biological child, Hannah.

December 10, 2006 - Zachary's due date.

*May 11, 2007 - the day I found out I was pregnant with Levi.

June 15, 2007 - Hannah's due date.

*August 2, 2007 - the day we picked up our first foster son, Matthew, from the hospital.

*January 11, 2008 - the day Levi was born.

February 12, 2008 - the day we had to say goodbye to Matthew.

*May 2, 2008 - the day we met our foster (and later, adopted) daughter, Melissa.

*July 25, 2009 - the day I found out I was pregnant; didn't know until later we were expecting twins.

September 17, 2009 - the day we lost our twins, Samuel and Sarah.

*December 3, 2009 - the day I found out I was pregnant with Seth.

March 15, 2010 - the twins' due date.

*August 17, 2010 - the day Seth was born.

*March 26, 2012 - the day I found out I was pregnant with Elliana.

July 3, 2012 - the day we heard that Elliana would probably not live.

That's a long list.  My apologies to anybody who's reading.  :-)

Looks like the happy life-changing days (the ones with a *) outnumber the sad life-changing days.  I think it was good for me to list those days and count them.  I have a lot to be thankful for.  Ten blessings.

But (reverting back to the pessimist in me), we've had 6 goodbye's.  SIX.  Our first goodbye (Elijah) was redeemed; we got him back.  Matthew, who I "mommy'ed" for 6 months, lives in another county an hour-and-a-half away with people who are strangers to us; we will probably never see him again.  And four of the six, we were never able to hold.  That's a lot of heartache.  Thinking about a 7th goodbye is just about more than I can bear.

There's a part of me (well, maybe more than just a part) that thinks 'Why in the world is God asking us to go through this?  Haven't we been through enough already?  Haven't we had our share of heartache?  WHAT are we doing wrong?  Is this punishment?'

I know the answers to some of those questions.  And the answers would probably help me, if I could 'ponder' them for a while.  The Gospel would help me.  But the noise of what we're facing just drowns everything else out.  I can't hear the Gospel.  I can't seem to remember it right now.

Margaritas, Please - Mi Casa Style

More appointments, more hours at the doctors office, and more pictures of our precious girl.  But not a whole lot more helpful knowledge than we had yesterday.  So how come I feel like I'm on information overload?

We had another ultrasound this morning, followed by an appointment with a different perinatologist (same kind of doctor as Dr. Nitsche, just a different doctor in the same practice), followed by an appointment with the genetic counselor.  It took 3 hours. 

I won't give ALL the details of those 3 hours - this post would be really long if I did.

Before all of the medical info, I do need to say... we enjoyed watching Elliana during the ultrasound today.  Watching her move and kick is amazing, given the circumstances.  Seeing her suck her thumb made everything feel so normal.  I can't wait to hold her.  :-)

As of today...

*We did get a little encouraging news about Elliana's brain, but the doctor also noticed something 'new' in her brain today.  We're afraid to put any confidence into the encouraging news.  This doctor was a little 'passive'.  She didn't really answer a whole lot of our questions.  She seemed to think the genetic counselor would be able to give us all the answers we were looking for.  The genetic counselor couldn't answer all of our questions, by the way.  I wish we'd been able to see Dr. Nitsche.

*The biggest concerns are still her brain and heart.  There are three other concerns, one of which was new to us today.

*Jason and I both have completely normal chromosomes, which is good.  But that also means that our bloodwork was not helpful in helping the doctors make an exact diagnosis.

*Elliana has an extra piece of chromosome 9.  There is also a smaller piece of a different chromosome attached to the extra #9.  They're unable to determine what that smaller piece is. 

*There are no other reported cases like Elliana's.  The closest we can get to knowing what to expect is somewhere in between two other diagnoses:  partial trisomy 9 and complete trisomy 9.  There are several living children who have been diagnosed with partial trisomy 9.  They have delays and differences, but they are living.  There are no known living children with complete trisomy 9.  In all of the reported cases, either the mothers terminated the pregnancy or the baby died before birth.  Elliana falls somewhere in the middle of those two, sort of.  But the extra piece of unknown chromosome makes things much more complicated.

*The prognosis:  we have no idea.  Because of the combination of things 'wrong' with Elliana, she may die before she's born.  Or she may die shortly after birth.  OR, she may live a few months, or even years.  We have no idea.  I don't think we'll know until it happens.  IF it happens.  We don't know which scenario to prepare for. 

So... pray for us.  We need to talk with our children about this, but we don't really know what to tell them.  We need to make a birth plan with several different scenarios in mind.  Talking about these things feels really heavy.  And draining.  I'm pretty sure a margarita would make that conversation a little easier.  I guess Jason will just get my portion.  ;-)

Piano, the Language of My Soul

I have been playing the piano since I was like, 8 or 9.  I was a weird student.  My mom rarely or never had to remind me to practice.  I enjoyed practicing.  I wasn't athletic, didn't dance or do gymnastics.  Piano was 'me'.  It was my thing.  My talent. 

As I got older, it became a passion.  I didn't even realize it was becoming a passion.  A few years ago, my mom told me that when I was in high school, she could always tell when something was bothering me because I would spend more time behind the piano.  I didn't even realize back then that I did that.  It is still true of me to this day - playing the piano is what I long to do when something is really bothering me. 

There have been a few times in life over the past few years that I've gone a month or two without playing the piano at all.  I think it's typically been right after the birth of a baby or the loss of a baby.  The birth of a baby made it physically difficult to be behind the keys on a Sunday morning at church, only because the new baby demanded my attention.  The loss of a baby made it emotionally difficult to sit at the piano bench, because I was afraid of the emotion that might spill out for all to see while I played. 

I think I've realized something over the past several years: playing the piano is a means for my soul to speak.  I'm not great with words, I'm not an eloquent speaker.  It's difficult for me to communicate with words what's going on in my heart, mind, and soul.  But music can do that for me.  My soul can 'speak' when I make music with my fingers.

I'm afraid to use that language right now.  I have a piano at home, but it's a bit of a challenge to find time to play it without 40 other fingers competing with mine.  The place that is easiest for me to play is at church.  Jason is sweet - he keeps an eye on the kids during band practice on Sunday mornings, so I have very few interruptions from those 40 fingers I compete with at home.  And then I get to play during the service.  But playing on a Sunday morning with other musicians, and playing in front of other people feels too vulnerable right now.  Like people will be able to see inside my heart and know how much hurt is there.  And I don't want to expose that to everyone.

Oh, but I want Elliana to hear me play.  It might still be a little early for her to be able to hear sounds outside the womb, but that time is coming soon.  I want her to hear Beethoven and Chopin.  I want her to hear her mama play passionately.  I want music to be pleasing and enjoyable to her ear because she's heard it all of her life. 

I've read that she can hear my voice now, and I want her to hear me sing.  Something other than 'Lulu'.  I want her to hear me sing about her heavenly Father, the One who formed her, the One who loves her, the One who will heal her body and make her whole one day. 

But it's so difficult to play right now.  I think it's just because I fear feeling like my heart is naked and exposed.  And maybe I fear that whatever my soul is communicating isn't beautiful??  It doesn't seem like it will lead others to worship - which is the goal on a Sunday morning.  I'm afraid I'll just cry.  And it's difficult to sing, to speak the truths in those songs of worship... because I'm struggling with many of those truths.  I don't know how to sing about the heavenly Father I want Elliana to know... because I just don't understand Him right now.  It feels like He's done something cruel, and I don't know how I can sing all of those songs about how good He is.

I want Elliana to know and love music, the language of her mother's soul, so I will play.  As often as I can.  And I will do my best to sing.  Even though my heart is torn, I know that God is good.  Even though I just want to scream, 'WHY?!?', I know that this is His plan.  And even though I'd so much rather hold a perfect, healthy Elliana in my arms for a long, long time, I know that He created her exactly the way He wants her; He hasn't made any mistakes in forming her tiny little body.  Maybe playing and singing doesn't have to look like 'worship' right now, not the way worship looked for me a few weeks or months ago.  Maybe it just looks like being thankful for her.  Maybe playing and singing can just be one of the ways that I love her right now.  Really believing those truths about my Father, and really worshiping - I think that will come.  Eventually. 

When Normal isn't Normal Anymore

A couple of weeks ago, normal everyday activites and decisions were just... normal.  Our biggest stresses were - well, I can't even remember.  Life before the news seems like a different life.  Now, everything takes so much energy. 

Friday was my first day at home alone with all 4 kids since July 3.  Levi spilled what seemed like a gallon of chocolate milk all over the floor.  Seth emptied my purse and found most of a bag of Skittles, which also ended up all over the floor.  I let him eat them all.  Off the floor.  (Hmm... chocolate milk and Skittles.  All before 9am.  Oh, well.)  I piled all the kids in the car to go pay off a bill at a doctor's office that I will never return to again.  We went to the bread store where the nice ladies (who probably recognize me now after years of regular visits to get cheap bread) don't have a clue how my heart feels like it's being ripped in half.  My phone fell into the pool.  It is now sitting in a bag of rice.  Activites typical of a normal day.  But all of it just took So. Much. Energy.

Yesterday, Seth jumped into the pool, and his head hit my lip.  It wasn't by any means an awful injury.  But it stung.  My lip swelled just a little.  And I cried.  I don't remember the last time I cried over an injury, and this wasn't even a real injury.  It's something I would have called a 'boo-boo' on one of the kids.  But I cried.  If I'd been alone, I would have sat down and sobbed.  I cry over anything.  My sweet friend got me some ice, and I'm sure the lifeguards, if they caught a glimpse of the tears on my face, thought I was a baby. 

Then we received a check in the mail - reimbursement from Melissa's adoption assistance fund.  Some of the reimbursement was unexpected, so now we need to decide what to do with it.  There are so many things we could use it for.  The van needs a new tire, and the alignment needs to be fixed.  Elijah and Missy need school clothes.  The bushes in our backyard that line the street desperately need to be trimmed back by a professional.  But then I think... screw it all.  Forget what the doctors have said, and go buy crib bedding for Elliana.  Go and find her a homecoming outfit.  Start redecorating Missy's bedroom and make space for her new sister. 

And then, 'reality' comes back.  Maybe we should save that money.  We may need it for a funeral.  We may need to pick out a coffin. 

I can't believe I'm even writing these things.

I may need to find a dress for her to be buried in.  Do people have funerals for babies who die before they're 'full-term'?  What if she's stillborn?  And if you don't have a funeral, what do you do?  'The world' doesn't seem to value life until after a baby is born.  But I've heard her heart beating.  Many times now.  I've seen her squirming.  I've felt her kicking.  I know she's very much alive.

Tuesday, another big ultrasound day, is less than 48 hours away.  The closer we get to it, the more hope I feel.  Elliana is such an active baby.  I don't remember feeling Levi or Seth nearly this much at just 20 weeks.  (Or maybe I just have a horrible memory, and Levi and Seth were this active.)  But I can't help but think that the doctors have to be wrong.  Maybe it's the irrational mother in me that thinks, 'She's strong.  She's a fighter.  She's kicking me and squirming on top of my bladder and swimming away from the ultrasound tech to let me know that those doctors can't tell her when she's gonna die.' 

I suspect that if we get to enjoy Elliana's life outside of the womb, we're going to have a strong-willed little girl on our hands.  That's ok.  She'll fit right in at our house.

UGH.  (I'm going to drive myself nuts.)  I bounce between hope and fear in just SECONDS. 

Now I'm back to fear.  Fear that allowing myself to hope is just a set-up for Tuesday to be another awful, awful day.

And then there's the occasional comment from Levi that catches me off guard and makes me laugh.  Like just now, 'Mom, you stink a little bit.  But not much.  Hey, I thought you were gonna get me some juice?'  A little bit of normal.

The Echocardiogram

There are a couple of things I need to write about - just so I can stop thinking about them.  It helps to organize my thoughts, write, and then even read what I wrote over and over again.  My brain feels like it's constantly working.  Putting my thoughts in order and then reading over them helps my brain slow down. 

On Monday, we went to Baptist hospital to have a fetal echocardiogram.  I've spent a lot of time at Baptist, particularly the children's hospital.

When Elijah was a toddler, he went through a little bit of testing for cystic fibrosis. It was so long ago, I don't even remember what doctor we saw or what test(s) he had.

Levi has been a surgical patient at Baptist for a hernia repair.

Most of Melissa's specialists are at Baptist.  Her geneticist, endocrinologist, and ENT are at the children's hospital.  She's had multiple swallow studies, a few xrays, several hearing tests and one speech test.  She's seen a general surgeon, a plastic surgeon, and she's had 3 (maybe 4?) surgeries there.  Many hours at Baptist. 

Seth is currently a patient of the same surgeon who's done Levi's and one of Missy's surgeries.  Seth has a hernia (which just blows my mind - what are the odds that TWO of my boys would have inguinal hernias?), and surgery is scheduled for August 10.

So being at Baptist on Monday wasn't a 'new' experience.  But it was so very different.  We checked in on the 7th floor, Peds Specialties, just like I've done many times before.  But we didn't have a child in our arms or walking beside us, like every other parent there.  So we got some looks.  I'm sure people were just wondering what we were doing there without a child.  I was SO nervous.  Nervous enough that I felt sick to my stomach.  We waited in the waiting room for 30 minutes, which felt like f-o-r-e-v-e-r.  I remember hearing the theme song for 'Mickey Mouse Clubhouse' in the background from a tv in the waiting room, and I felt myself relax a little, which is just weird.  But I think I know why that song helped me - it was familiar.  It put me back in my living room, on any typical weekday morning, knowing one or two of the kids were watching Mickey Mouse while I ate my breakfast.  It was familiar.  Routine.  Ordinary.  I needed that.

Once we were finally called back, the ultrasound tech greeted us way too happily.  She asked 'How ya'll doin' this mornin'?' in a perky southern drawl, and I wanted to reply really sarcastically.  I didn't.  I was polite.  Quiet, but polite.  Once we were in the ultrasound room, her tone changed.  She softened, reassured me, told us everything she was going to be doing, and told me to do my best to relax.  Yeah, right.

She started getting things set up.  At one point, she needed to go get some paperwork, and Jason asked her where the restroom was.  And they both left the room.  It feels ridiculous, but... I panicked.  I was laying on that reclining chair, my tummy covered with a towel, and I was alone.  I couldn't breathe.  Tears just rolled down my cheeks.  I tried to tell myself that it was ok, that they'd be back in a minute - I even tried to pray.  I needed Jason to come back.  I have needed him with me more than ever over the last 10 days.  Eventually, the tech came back, and I don't think she could tell how upset I'd been.  I was thankful for that.  I was afraid that if she'd asked, I would have fallen apart all over again. 

The ultrasound was fairly uneventful.  I couldn't see the screen very well, so I could really only stare at the wall.  I tried not to look at the tech's face too much - I've learned that ultrasound tech's have great poker faces.  But they also make some pretty funny faces when they're concentrating on the screen.

The pediatric cardiologist wanted to speak with us about the results of the echo.  We were taken to an 'office' for this conversation, and that completely freaked me out.  I guess I always picture the office conversations being reserved for the really awful news.  But it turned out to be not-so-terrible news.  The doctor even asked us if we had a name picked out for the baby before he told us the results.  That tiny gesture right there skyrocketed my respect for him.

We left Baptist 3 hours after we had arrived.  Jason and I went to eat a little lunch, wishing it could be a celebratory lunch.  Even though we'd heard what we felt like was good news from the cardiologist, we both felt a heaviness, knowing that this news about Elliana's heart probably hadn't changed her overall prognosis. 

I'm not sure how to end this post.  This must be the most depressing blog ever.  I feel like I should try to close on a happy note.  But I've never been a 'look for the silver lining' kind of girl. 

Test Results and Decisions

Yesterday was an exhausting day.  Check-up for me & Elliana, pre-surgical appointment for Seth (hernia repair), and then a phone call from the doctor. 

The doctor, Dr. Nitsche, had the results of the amnio.  He said that there appeared to be an extra piece of a chromosome.  They couldn't tell what the extra piece was, so they had Jason and me come in for some bloodwork.  Dr. Nitsche is hoping that they'll be able to use our blood to determine what the extra piece is. 

I guess we have the beginnings of a diagosis.  We know there is a chromosomal disorder, but we don't know exactly what it is yet.  Whatever it is, it's rare.  It may be unique to our girl.  The prognosis doesn't sound any better than it did a week ago. 

Jason and I are still struggling with how to manage these next several months of pregnancy.  My OB, Dr. Dillard, briefly talked to me about what would be coming in the next several weeks - some difficult decisions: 

Do we want the doctors to follow Elliana more closely through the remainder of my pregnancy than they would a 'healthy' baby?  If they start to see her showing signs of distress, do we want them to deliver her early and do what they can to help her?  Or do we want to allow 'nature' to takes its course?  If she's delivered full-term, what kind of measures do we want them to take?  Life-saving surgeries?  Or do we want them to just let us be with her for whatever time she has alive? 

I never thought I'd have to make decisions like this.  Whether to do everything we can to help our little girl live, or let her go to be with Jesus.  We know that, ultimately, whether she lives or dies is not our choice.  But we do have to tell our doctors something.  I think we're both hoping that clarity will come with more information about Elliana's condition.  But even once we know and have made decisions, I think I'll STILL struggle.  I can see myself believing wholeheartedly that we should fight for her and do everything we can to save her, but then the next day, believing wholeheartedly that she would be in too much pain, that I'd rather spend her hours or days of life holding her close, and then letting her go.

Sometimes - most of the time - this feels like too much.  It's too difficult.  It hurts too much.  I just can't do this.  And then sometimes, I feel small shreds of hope.  Sometimes, hope looks like Elliana beating the odds and thriving.  Or the ultrasound and the diagnosis being wrong.  Sometimes, hope looks like spending the remainder of this pregnancy with her purposefully, as if it's all I have with her.  Talking to her, singing to her, shopping with her, as weird as that may sound. 

You know - who cares if it sounds weird?  I'm past weird.  Carrying a baby with a 30% (or less) chance of survival to term is insane.  Lovingly insane.

The Short Version

Basically, here's what we know at this moment...

Last Tuesday, my doctor had 4 major concerns about Elliana.  One was very serious, life-threateningly serious - her brain.  One was somewhat serious, but surgically 'fixable' - her heart.  And two were somewhat minor. 

Today, although we did not get a confirmed diagnosis, we did get some answers about Elliana's heart.  And it wasn't terrible news.  It wasn't great, but it wasn't awful.  The pediatric cardiologist said from what he was able to see, he believes that Elliana falls into the 'mild to moderate heart disease' category.  He thinks she either has Pulmonary Stenosis or Tetrology of Fallot.  Both conditions can be treated, and neither has to be treated immediately after she's born.  That was 'good' news.  After what we heard last week, either of these diagnoses feels like a breeze.  This doctor wants to continue to watch Elliana as she grows over the next 4 months to try to confirm the diagnosis.  So I get to watch her do her little riverdance every 4-6 weeks with the cardiologist.  Little Elliana is certainly getting lots of screen time. :-)

Jason and I both feel a degree of relief, but there is still so much uncertainty about Elliana's brain.  Both doctors we saw last week, my OB and the maternal-fetal specialist, felt that what they saw in her brain was most concerning.  Of more concern than her heart.  The flaws in her brain could be what takes her little life. 

So, we were relieved to not hear more awful news.  But I think neither of us feels any more hope than we did yesterday.  So we wait.  Next Tuesday, the maternal-fetal specialist will take a closer look at Elliana's tiny, growing body, and maybe he'll have more answers for us.

I know Who formed her body.  I know Who holds her future.  He answered me again today:  the flaws in her heart were not nearly as awful as I feared.

4:59am

It's 4:59am.  I can't sleep.  I wish I could.  Sleep is a relief from all of this. 

Sleep is a relief for my mind.  When I sleep, I can finally stop thinking. 

And it's a relief for my heart.  When I sleep, it doesn't hurt.  And I don't cry over the littlest things.

Yesterday afternoon, Jason and I were trying to make a plan for the evening.  We'd been inside all day, and the kids were starting to go stir-crazy.  It was simple conversation.  Almost normal.  And then I received a text from my mom, telling me that she'd be here at our house around 8:30, and that my dad was coming, too.  And the tears came. 

Oh, for Pete's sake, when will this STOP?  I just want to be able to turn them off for a while.

It's like a light switch.  Tears just come over anything.  Poor Jason - one minute we're having a somewhat normal conversation, and the next, I'm boo-hooing AGAIN.  He's got to be tired of it.  I'm tired of it. 

Sleep is such a relief.  Maybe I can doze off for 45 minutes before we have to get up and get ready for Elliana's echo. 

What If's...

It's been 5 days since Jason and I were told that our daughter probably would not survive long after her birth.  And I still can't believe it's happening.

But maybe they're wrong.  An 18-week ultrasound can't be that accurate, can it?  And I heard the sonographer - both of them, actually - say that Elliana wasn't positioned ideally for them to get clear pictures of everything they needed.  On Tuesday, it sounded almost certain that she would not make it.  Since then, I've talked to the doctor over the phone a couple of times.  Now he's talking about gathering more information.  Doing a couple more tests to get a more accurate picture of the things that concerned him the other day.  He's talking about surgeries she might need immediately after she's born.  He sounds... hopeful?  That might be too strong a word.

But maybe, just maybe, we'll find out that Elliana is doing a whole lot better than we think she is? 

I've had some abdominal aches and pains today.  A week ago, I probably wouldn't have given them much thought.  But since I'm still in the window of risk associated with an amioncentesis (Yes, I had an amnio.  Never, EVER thought I would.  Ever.  I hated every minute of it.), I started worrying that perhaps I was feeling the beginnings of some kind of side effect.  So I called the on-call number for my regular OB.  I didn't go into the whole story with the kind woman (a midwife, I think) who spoke with me.  I didn't tell her what we were told about Elliana.  But I did tell her I had an amnio and what I was feeling, and then she asked me lots of questions.  She very pleasantly reassured me that the baby had probably gone through a growth spurt and my body was just adjusting to the added weight.  Probably no reason for concern. 

Two voices compete in my head. 

One says to me, 'A growth spurt??  She doesn't know what they told you the other day.  They told you she's measuring small.  Weeks smaller than she should be.  A growth spurt isn't likely.' 

The other says, 'What if she has grown?  What if she's been miraculously healed?  Maybe my Elliana is going to be ok?  Please, Lord, let it be so!'

Please...

Tomorrow morning, we'll see (and hear, I hope) Elliana's heart during a fetal echocardiogram.  I think I'm daring to hope that maybe it won't be quite as bad as it appeared 5 days ago.

My God Answered Me

I'm panicking a little bit.  I haven't felt Elliana move since this morning.  And I know I'm probably being irrational - it's been hours.  Not days. 

Earlier this week, the doctor talked to us about our 'options'.  And there were really only two.  Carrying Elliana for as long as possible, or terminating the pregnancy.  I don't think I ever actually 'considered' termination.  I never contemplated going through with an abortion.  But I'm ashamed to admit that at that moment, it wasn't because I valued Elliana's life.  It was because I couldn't bear the thought of taking her life.  How can a mother think things like, 'I don't think I can do this.  I can't carry this baby knowing I will have to bury her almost as soon as I deliver her.  Maybe it would be easier if she went to be with Jesus sooner rather than later.' 

But now, 4 days later, I'm begging God for more time with her.  I'm pleading with Him to let me feel her and enjoy her life as long as possible.  For the next 20 weeks, as tortuous as it might be. 

It's taken me about 20 minutes to write this.  And just a few moments ago, my God answered me.  I felt her.  :-)

Her Name

Over the past couple of days, I've had a really difficult time connecting the baby I'm carrying with the baby we heard about on Tuesday.  I have cried many tears over that little girl - the one I saw on the ultrasound screen the other day.  But I can not connect that baby with the one I feel moving and kicking every day.  And I feel incredibly guilty about that.  I love the little girl I can feel.  She's mine.  Forever.  But the baby girl whose little body is broken doesn't feel like mine.  It's like they're two different babies. 

I think I need to start calling her by her name.  Maybe it'll help me start connecting the 'two' babies, if that makes any sense at all.  I've had a name picked for a little girl for about 6 years.  When I was 2 months pregnant with our first baby, I was looking through a baby name book and found a particular name for a little girl - its meaning was perfect.  I had longed to carry a child ever since I was old enough to understand that I could do that.  :-)  And this name means 'my God has answered me'.  It was perfect for my first biological daughter.  My prayers to conceive had been answered, so this name fit, if it was a girl.  My God had answered me - with a big YES.  I thought.  But we lost that baby just 2 days later.  So I tucked away the name for the baby girl I hoped to have one day. 

Six years and five pregnancies later, and I am finally carrying a baby girl.  And since the day those 2 pink lines appeared on the pregnancy test, I knew that, should this baby be a girl, her name had been picked.  But I pictured a perfect healthy baby girl with this name.  I'd bring my perfect newborn home and get lost in the sweetness of newborn love.  On Tuesday, those dreams came to an abrupt halt.  I'm about to be brutally honest here - how, oh how, I can call this little girl 'my God has answered me'?  How can this be His answer?  How can I reconcile that His answer to my prayers for a baby girl is this: a sweet girl with such a broken little body and so little hope for survival?  I must confess:  I don't want this to be His answer.  I don't want this nightmare.  I would change it all in a heartbeat.

No matter how little I like this, this is God's answer.  He has given me a little Lindegren girl.  Somehow, though I will probably never know or understand how, this is part of His perfect plan for my life and hers.  And no matter how much is 'wrong' with her, He knit her together in my womb.  She is fearfully and wonderfully made.  She has been created in His image.  She is even more precious to Him than she is to me.  And she is very precious to me.  I love her dearly and am growing fiercely protective of her.  She is a gift, for as long as I have her.  Even if I only get to enjoy her in the form of her sweet little kicks.

So I will call her by her name, 'my God has answered me'.  My precious Elliana. 


*We live here in the south where everybody pronounces everything differently. So this is how we'll pronounce her name:  eh-lee-AH-nah.

Putting my thoughts on paper

The last time I posted something on this blog was a little over 3 years ago.  Obviously, I'm not a great blogger. 

I've decided to try it again, mostly as a place for me to think out loud.  My mind is so jumbled with thoughts that I can't concentrate on anything else.  Or sleep.  I'm hoping that after I put my thoughts 'down on paper', my brain won't feel quite so jumbled and cluttered.

I don't really have the energy to start from the beginning right now.  I'll have to do that another time.  The following is a letter I sent out to family and several friends last night:

Dear Friends,

It's been a long day. One of the longest I've had.

We had our ultrasound this morning, and for 30 blissful minutes, we were able to enjoy watching our baby girl kick and squirm. She's a fiesty little thing - stubborn, too. Our sonographer had to do a good bit of chasing and poking to get her to cooperate. :-)

For a short time, she was perfect. I pictured her a few years from now with long blond hair and big blue eyes, dancing with her daddy in our living room.

But then our doctor came in to discuss the findings of the ultrasound. She was concerned about several things - the way our little girl has formed so far. Her concerns were serious enough that she sent us almost immediately to the maternal-fetal specialist at the women's hospital. At least we didn't have to wait days or weeks to see the specialist. I was already in tears by the time we left - and I guess it's never a good sign when the nurse gives you an entire BOX of kleenex when you leave the office.

Another ultrasound was performed at the hospital. The specialist came in and explained all of his findings - it's all sort of a jumbled mess in my head. But it comes down to this - little Lindegren girl most likely has Trisomy 13 or Trisomy 18, both chromosomal disorders. Similar to Downs, but more serious. From what I've read, 50% of babies born with either of these don't survive longer than a few days after birth, if they make it that far. And 90% don't survive past their first birthday. Some live a few years, but with significant medical problems.

I don't even know what to tell you about how Jason and I are doing. We haven't told the kids yet, we don't really want to make this 'public' knowledge yet, but we know we can't avoid that forever. We don't really know how to go through the next 4-5 months of pregnancy. We walked out of the specialist's office today and I saw a great big bunch of pink balloons at the end of the hall, probably in celebration of a mom and baby girl who were about to head home. I burst into tears at the sight of it. This is going to be really, really hard.

I guess I should ask you to pray, but it feels weird to do that, since He and I aren't really on speaking terms right now. So if you feel led to pray, go right ahead. You can do it on my behalf. Because right now, I just can't.

Thanks for your love, support, and friendship. If you have any questions, you can feel free to ask. Not sure I'll be able to answer, but I'll try.

Shannon

Today, I just have these thoughts that I don't know what to do with.  They're random.  No order to them.
 

I open Missy's closet door and see her dresses hanging up. I start crying when I realize that our unborn baby girl will probably never wear them.

I wonder what the first moments after she's born will be like. Will she go straight to the NICU? Will she be breathing? Will I get to hold her?

I look at Seth's perfect little face and wonder what my little girl will look like. Seth asks to be carried or in my lap a lot, and I have indulged him every single time today, wondering if he'll be my last baby to hold.

I don't know what to prepare for. Most moms buy clothes for their unborn babies. They gather blankets and diapers and burp cloths. I long to go shopping for beautiful girlie dresses and hairbows. Do I go to the hospital with nothing for her, anticipating that I will return home without a baby? Or do I take a stocked diaper bag and take the risk that I'm going to have to empty it out and give it all away because my daughter is gone?

I have no appetite. But I eat. Mostly because I know how absolutely physically awful I will feel if I don't. I eat because little girl Lindegren is still growing. She needs the calories. Even though they will do nothing to save her.

I sing Seth's favorite song, 'Lulu', to him and choke up because I wonder if I'll ever be able to hold this unborn baby and sing it to her. And if she'll ever make her own sweet attempts to sing it with me.

I look at Levi's big blue eyes and wonder if hers will be the same beautiful ice blue. And if I'll ever be able to see them.

She got the hiccups today. I felt them - those rhythmic little pops. She's practicing swallowing. I've felt her move several times today. Maybe expressing her objection to all those things the doctor said about her yesterday. And how he kept calling her 'it'.

It hurts to think about her name. The name we've had picked for several weeks now. It took us months to settle on our other childrens' names. But I've had this one in mind for years. It holds a great deal of significance, and I'm having a hard time with that significance, now that the circumstances are so unimaginably awful.

Maybe this was all just a bad dream. Maybe I'll wake up tomorrow and she'll be perfect. Maybe they were looking at someone else's baby on the ultrasound screen yesterday.