Sunday, July 15, 2012

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.

Thursday, July 12, 2012

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.

Monday, July 9, 2012

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. 

Sunday, July 8, 2012

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.

Saturday, July 7, 2012

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.  :-)