26 weeks, 5 days

Fear, sorrow, tears - and today, anger.

Our family has been dealing with a nasty virus for the past 2 weeks.  I can't decide for sure if what I was sick with last week is the same thing that my littlest boys and Jason have been fighting, but for now, I'll assume that it was.  It has knocked 4 of us out for several days.

I was sort of angry that I got sick.  I think I said before that it feels like being that ill was just 'adding insult to injury'.  But Jason getting sick has really made me angry.  It's interesting how I haven't felt much anger towards God over Elliana - confusion, sadness, not understand AT ALL - but not really anger. 

I'm angry this morning.

Jason has been home the past 2 days - sick in bed.  And he really should have stayed home today.  He feels awful.  He accrues vacation hours (no sick time) throughout the year, and as of today, he has none left.  We may actually be 4 hours in the hole. 

The written word can not come close to expressing the degree of anger and sadness I'm feeling right now.  Why did God let him get sick?  In the middle of the week?  Why couldn't it have been during this 3-day weekend coming up?   God knows what we're going to face at the end of November.  I needed the 'security' that a stockpile of vacation hours gave me.  It feels like that rug of security has just been snatched from under my feet.  Is this some attempt on God's part to get my attention? 

I just can't even go there this morning.  Too angry and upset.

Yesterday, I met with the lady from Kids Path.  I cried through most of it - started as soon as I pulled into a parking space.  She was kind and understanding, but it's so difficult to talk about Elliana's birth day.  To think about what that day will be like, what her first cry will sound like, what her face will look like.

I told Jason last night that each appointment, each step we take, makes it feel more real.  This is actually going to happen.  In about 12 weeks.  And it's coming too fast.

I'd really like to insert a very ugly word right here.  Because I do not want to acknowledge the other side to something I wrote a few paragraphs ago. 

God knows.

Makes me so angry.  But I know - somewhere in the roots of everything I know to be true about God - if I'd let it, that statement, 'God knows', would comfort me, too.

26 weeks, 2 days

I had an appointment this morning - check-up and glucose tolerance test. 

Appointment days are (predictably now) much more difficult than other days.  There are so many normal things about check-ups that are so not normal anymore. 

Sitting in a waiting room with other pregnant women who are excited about being there.

Trying to keep my composure with the nurses who are oblivious to our circumstances, who ask the normal OB visit questions like, 'You feel the baby moving ok?'

Drinking that stupid glucose drink, half wondering 'what's the point?'  That drink gave me heartburn.

Sitting in *another* waiting room - the same one Jason and I sat in the day of our first ultrasound, so excited about the news that we were having a girl, completely unaware of what we were about to be told.

Listening to her heart beating with the doppler.  It's such a beautiful sound.  But it just makes me cry.

Watching the stupid tv screen in the exam room - information about 3D/4D ultrasounds, pictures of perfectly healthy babies and happy pregnant mommies.  Sometimes I just turn the tv off.

And then talking with the doctor.  Today, the primary topic of conversation was setting a date for a c-section.  Thinking about that day - ughhh - I just want to throw up.

It feels complicated.  My due date is Sunday, December 2.  Here are all the things that make it complicated, although I'm probably making it more complicated...

Scheduled c-sections are usually at 39 weeks, which would be Sunday, November 25.  So, medically, the best date would be Monday, November 26.

I really want to make the most of the time Jason has to take off.  It would be ideal to schedule a c-section on a Friday, probably the Friday after Thanksgiving - he's already off that day, he'd have the weekend, he could take the following week off, and then he'd have another weekend with me.  He'd have a total of 10 days off, including delivery day - and only 5 of those would be considered 'vacation' days from work.

And 10 days would be really... good?  That feels like the wrong word.  Because none of this is 'good'.  From my point of view, anyway.  10 days.  If we have to bury our baby girl, we need time.  Time to cry and grieve, time to process (I hate that word), time to be together.  10 days would be 'good'.

But that Friday is still technically a holiday.  Doctors don't typically schedule c-sections that day.  Although, I was told today that they would accomodate whatever we ask.  I'm growing to hate that.  I don't want to be in a situation where anybody will do anything they can to accomodate us.  I'd rather be normal - where our lives have to revolve around the doctors and hospital regulations.

And that Friday is Black Friday.  (I know - this is sorta silly.  But it's not.)  It has become an Odell girl (my sisters and I) tradition to shop on Black Friday.  I sorta feel like I'll ruin Black Friday forever if I schedule a c-section that day.  And there's a tiny, irrational part of me that wants screw the rules of pregnancy travel, go to my parents' house for Thanksgiving, and DO the Black Friday shopping.  A last kind of 'normal' thing - keep the routine and tradition - before a new kind of hell begins.

And if I did schedule a c-section for Black Friday, I wouldn't quite be 39 weeks.  If... if... IF my little girl has any chance at survival, I don't want to add any risk by having her delivered too early.  Before her lungs are really ready for breathing. 

All the complicatedness of scheduling Elliana's delivery is nothing compared to the emotion that wells up inside me just thinking about that day.  I feel like I'm scheduling the day of her death.  Like I'm putting on my calendar the day we meet... and say goodbye.  I really don't think I can do this.

That nagging voice of hope won't go away.  Today, I just want it to be silent.

26 weeks, 1 day

26 weeks

The Belly

My self-portrait.  Levi wanted to get in on this one and make faces at Elliana.

The Crappiest Pregnant MomentS
Heartburn.  Terrible, awful, makes-eating-a-miserable-experience heartburn.

The Happiest Pregnant Moment
Elliana got to 'meet' Grammy this weekend.  AND - she got to chat with her Mimi and Granddaddy.  Or, Mimi & Granddaddy went all crazy-grandparent on her and talked to my belly.  BEST kind of crazy.  :-)

The Cravings
Several days last week, all I wanted was a milkshake - because it soothed the heartburn.  On Saturday, it was a bread bowl with chicken noodle soup.  Yesterday, it was cheddar cheese.  Today, Ghiradelli brownies.  And I'll bet you anything that none of those things will sound good tomorrow. 

The Big Sibs
One day last week, Missy and I were in her eye doctor's office.  She saw a baby in one of the exam rooms.  'Mommy, baby!  You have baby?'  'Yes - in my tummy.  Right here.'  'I see her?'  'We can't see her yet, but I hope you get to see her soon.'  'That MY sister.'  And the tears came.  *sigh*

Lbs:  pre-preggo weight +2

This Week
Check-up and glucose tolerance test tomorrow morning with my regular OB.  First meeting with Kate (Kids Path) Thursday afternoon.  Absolutely dreading that one.
 

25 weeks, 4 days - Monday's Echocardiogram

Elliana had her second echocardiogram on Monday morning.  We saw the same doctor (the only one who has asked her name) but in a different location.  We didn't have to go back to the great big ped's office at Baptist.  This was a much smaller office and significantly less scary.

Dr. and Ultrasound Tech spent about 45 minutes looking at various angles of Elliana's heart.  I tell you what - this girl is busy.  Most of that time was spent chasing her around the screen, asking her to hold still just for a second.  And no, I hadn't had any caffeine that morning.  :-)

The doctors conclusions were slightly different this time.  At our last appointment with him, he believed that she had pulmonary stenosis - a condition where the entrance to the pulmonary valve is too narrow.  But after this ultrasound, and after 6 weeks of heart growth, he believes this valve is fine - no reason for concern there. 

I started to cry after he told us this.  Tears of relief/joy/but-still-so-sad.  It was the first actual good news we've heard about our daughter since this nightmare began to unfold.

But then there was some 'bad' news, although in the grand scheme of things, it really doesn't feel that bad.  The doctor did find an opening between two ventricles in her heart.  A 'moderate' sized opening.  This is actually a fairly common heart condition - among children who have heart conditions. 

The prognosis for her heart is good.  Most babies do well in the newborn period and even into early infancy.  Open heart surgery would be necessary between 4-6 months of age to repair the opening.  The doctor sounded very positive.

????????????????????????????????????????????????????????????????

We don't understand how this information fits into the rest of Elliana's prognosis.  We've been told, more than once, that she'll live a few hours, maybe a few days.  But we SO DESPERATELY want to hope that maybe they're wrong. 

Maybe if her heart really isn't in terrible shape (and it isn't in terribe shape - it's working beautifully!), she'll pull through and be the fiesty little fighter that I think she is.

'25 weeks', a couple days late

I'm taking a break from the depressing reality of my thoughts and emotions, and I'm going to attempt something more... fun?  I have a friend who posts weekly about her pregnancy.  She includes a profile picture and details about her cravings, highs, lows, weight gain (yes, really), and how the siblings are doing with all the anticipation of a new baby. 

Although it feels very different for us, I like the idea, and I think I'd like to use it.  I'm going to try adding this to my blog.  Partly because I'm sick of posting/journalling all of this depressing stuff.  My blog just makes me cry.  (I think that can be a good thing, by the way.  Crying isn't wrong, especially in this circumstance.)  And also because - if Elliana's life isn't longer than a few hours or days, then these moments, her days in the womb, are the only time we have to make memories of her.  To make memories with her.  So I want to do that - with as much happiness as I can muster.

Elliana likes this idea.  She just woke up and kicked my belly button.  :-)

I may also change the name of the blog.  It's currently titled 'The Lindegren Family'.  But it's not really about the family.  This is my journal.  It's about my journey to meet my daughter.  Anyway...

25 weeks

The Belly...

(OMGoodness, I can't believe I'm doing this.  I hate having my picture taken.)
(The pictures tell the story - it was quite an ordeal getting a decent picture.)

Obviously, we won't be trying to get all the kids in each week's picture.  I'd wind up in tears and I'd have puffy, red eyes in all the pictures.

The Crappiest Pregnant Moment
Going to the Lazy 5 Ranch and sitting through that hour-long wagon ride.  The very long, bumpy, smelly, joint-wrenching wagon ride.  My hips and lower back paid for that all day.

The Happiest Pregnant Moment
Well, it was sort of bittersweet, but it made us smile, even laugh a little.  I guess a lot of our 'happiest moments' will be bittersweet.  After our appointment last week, Jason and I were talking a little bit about what it would look like to bring her home.  Most of that conversation was really difficult, but then I said, 'If we get to bring her home, that girl will never be put down.  Not for a single second.'  That thought - the thought of just holding her, without fear of spoiling her, but just loving her and being close to her - that made us both happy.

The Cravings
Can't really call them cravings, but at least they sounded good - Hershey's chocolate cream pie and Jason's fried egg sandwiches.

The Big Sibs
Levi felt Elliana kick for the first time!  Elijah acts all tough about it and says, 'What's the big deal?'  But then he'll catch me off guard, give me two hugs, and tell me that one was for Elliana.  Seth and Missy - well, they're not very curious about her yet.  Hoping to remedy that.

Lbs:  pre-preggo weight +1 (Yeah - that's not a typo.  But not surprising, given how emotional this has been, right?)

Big Events/Appointments Coming Up This Week:
Elliana's second echocardiogram is Monday morning, August 20.  (Since I'm posting this late, we've already had the echo.  Will post details about that in the next day or 2.) 

25 weeks,2 days

I'm having one of my hard mornings.  I feel awful, and tears are just coming way too easily.

Warning: full-fledged pity party ahead.

I've been sick for 3 days now.  The only time I get sick (like, feel-so-bad-you-can't-function sick) is when I'm pregnant.  Which, at this point, just feels like God is adding insult to injury.  Fever, cough, and now (as a result of the AWFUL cough) sore throat, sore chest/tummy/and even back muscles, and not very much voice (which means I can't raise my voice at the kids).   Jason HAD to go back to work today.  He took off last Thursday and yesterday, both days to take care of me (and the kids).  But we'll need vacation hours later in the year, when Elliana is born.  So... he had to go back to work today.  I was hoping that once I got up and moving I'd feel better.  Not the case.

Antibiotic, please start working soon.  Like, now.

And the tears.  Elliana is always on my mind.  Watching her on the ultrasound screen yesterday (echocardiogram was yesterday, more about that later) was so bittersweet.  At one point, the ultrasound tech and doctor were trying to look at a specific part of her heart - they were looking at her heart from the back of her.  The angle enabled me to see her right shoulder, and the right sides of her neck and head.  I could tell when she was moving her arm because of the way her shoulder moved, and I could watch her head bobble around a little bit.  It was so sweet.  So normal. 

She moves.  She sucks her thumb.  She kicks.  She responds to me (or a somewhat aggressive ultrasound tech) pushing on my tummy.  It's purposeful.

This is one of those mornings that I feel like this can't really be happening, and God is just out to make my life miserable.

Today is Seth's second birthday.  It's a bittersweet day.  I'm so thankful for him - so thankful for each of my children.  Their births and lives are all the more miraculous, with the perspective Elliana's life has given us. 

My heart SO wants to hope that we get to celebrate Elliana's second birthday.

But for today, I will try to be thankful for Seth's sweet smile, his charming blue eyes, his precious little voice, and his perfectly healthy little body.  I love him dearly - he seems to know when I need his hugs, and he makes me laugh.  So for today, I will try not grieve his growing up too fast or his little sister's uncertain future.

24 weeks, 4 days

I'm struggling with 2 very conflicting perspectives.  Well, I'm struggling with a lot today - it's like I've had the nightmare all over again, and I've woken up again to find that it's really happening.  It's been a really hard day.  Not as hard as it could have been - Jason stayed home with me.  Having him with me helps.  A lot.

The 2 perspectives I've been struggling with have to do with the way I view this pregnancy.

Perspective #1:

I've been thinking a lot about the crappiness of pregnancy.  Pregnancy is really hard.  I've tried (and probably not succeeded) to keep my pregnancy complaints to a minimum through past pregnancies - because I remember when I would have given anything to be pregnant.  I remember the longing, and I remember how hurtful and insensitive it felt when others complained about pregnancy.  I thought they should be grateful for the ability to carry a baby and remember that there are so many who have never been able to conceive and would take the crappiness of pregnancy over infertility any day.

But in all honesty, pregnancy is really hard.  Back aches, trouble sleeping, having to run to the bathroom all the time, heartburn (oh, the heartburn), back aches, nauseau, foot aches, leg cramps, the general feeling that someone else has taken over your body, more back aches, the possibility of having a meltdown and crying and any given moment, and several other things I won't share because it's just TMI.  It sucks.  But the great thing about pregnancy is that all of the crappiness is worth it. When I was pregnanct with Levi and my ankles were swollen to the size of small balloons, I could say it as worth it - because in the end, I'd have a baby in my arms.  When I was 9 months pregnant with Seth in the middle of the hottest August EVER, I could say it was worth it - because in the end, I'd have a baby.

What do I say this time?

There is an immeasurable amount of guilt in what I'm about to write.  How can I say 'it's worth it' this time?  How can I say that the really, truly difficult parts of pregnancy are 'worth it'?  Yes, I will have a baby to hold at the end of all of this.  But my baby isn't going to live.  I think it hit Jason pretty hard yesterday - his words made reality sink in even more - 'I'm going to have to watch her die.' 

This feels cruel.  And enduring the rest of the crappy (I'd really like to use a much stronger word there, by the way) parts of pregnancy feels even more cruel right now.

Perspective #2:

I've also been thinking about the 'joys' of pregnancy.  Pregnancy is like a giant excuse to get just about anything you want.  Or get out of just about anything.  Extra foot rubs for my aching feet.  A free pass to eat whatever sounds good.  New clothes to make your baby belly look cute.  Limited housework because vacuuming and mopping make your back hurt.  You can even let your tongue fly and have a hormonal excuse for that.  And if you have a dad like mine, he'll prepare, or go to the store and get, whatever your taste buds desire.  At any given moment.

I think what I'm struggling with is feeling like (and afraid other people sort of subconsciously think that) I'm not actually pregnant since I'm carrying a dying baby.  I feel like I don't deserve to indulge my appetite.  Or get a free pass from housecleaning.  Or ask Jason to rub my feet.  Rather than carrying and delivering a baby, our baby, who will bring us much joy and laughter, I'm carrying and delivering a baby who, unless a miracle happens, will die.  And whose death will bring tears and sorrow.  How can I ask my husband, the father of this child, to rub my aching-because-of-pregnancy feet?  He does rub my feet.  My husband has done nothing but love me well through this.

One of my brothers-in-law was the first person to treat me like a normal pregnant lady since we found out about Elliana's condition.  He arrived at the beach house during the Odell family vacation, came over to me and said, 'OK, Shannon.  We've got to talk about this weight you keep putting on.'  It made me feel normal.  It made me laugh.  And then it made me cry (rolling my eyes, crying AGAIN).  He made several comments like that.  Thanks, Joel.  :-)

I think I knew that our choice to continue this pregnancy meant sacrifice.  But I think I'm so overwhelmed by all of the actual sacrificing (or maybe it's just grief and self-pity?) that I can't see where this sacrifice is leading.  If sacrificing meant life for Elliana, it would be easier, I think.  Maybe I'm afraid that everything I'm enduring is in vain.  I know it's not.  I just can't see how it's not.

24 weeks, 3 days - Ultrasound #4

We were hoping for a better prognosis today.  That didn't happen.  Hopes crushed.

If I were a 'look for the silver lining' kind of girl, this would be the silver lining - we had a different ultrsound tech today.  She didn't treat my tummy like dough to be kneaded.  She was much easier on me and Elliana.

One of the things I had hoped for was decreased fluid around Elliana's brain.  I've learned over the past couple ultrasounds what fluid-filled spaces look like in the brain - they are dark, black spaces.  So when the ultrasound tech started taking measurements of her head, I searched the screen for those dark places around her brain.  I was hoping to see small dark spaces.  Of course, I couldn't really tell if they were smaller or larger, but the tech told us the measurement of fluid behind her cerebellum was 13 (it should be under 10), and the measurement of the ventricle they're concerned about was 16 (it, also, should be under 10).  So... as soon as we heard those numbers, we knew things were no better.  The '16' is actually a little worse than 4 weeks ago.

During the ultrasound, one of the genetic counselors came in to give us some printed information about Tetrasomy 9p, and she tried to explain what Elliana's 9th chromosomes look like.  I didn't understand it correctly before. 

This is a normal 9th chromosome:  pppppppppppp--qqqqqqqqqqqqqqqqqqqqqqqq

Most people have two of those. 

But Elliana has 4 complete copies of this portion of the chromosome:
pppppppppppp--qqqq.

Those copies are attached to each other in pairs, mirrored like this:
pppppppppppp--qqqq/qqqq--pppppppppppp

So, she actually has no complete copies of the 9th chromosome.  They're partial copies, attached together. 

This happens randomly.  Most parents of children with Tetrasomy 9p have normal chromosomes.  It's like this happens as a random stroke of bad luck.  Sometimes I think this would be so much easier to swallow if I believed in bad luck.  Because I don't know how to comprehend that God would ordain this.

Back to the appointment...

I think even after the ultrasound, both Jason and I still had a little hope.  Maybe things aren't as bad as we heard last time.  Maybe the doctor will come in and tell us that they really don't know what to expect when Elliana is born.  Maybe we still have reason to hope.

All of the hope behind those "maybe's" died pretty quickly when the doctor came in.  She sat down beside me and said (very kindly and compassionately), 'I guess I don't need to ask how you're doing.'  That statement alone just about sent me over the edge.

Up until today, I haven't really understood why the prognosis has been so poor.  Elliana's heart condition isn't that bad.  Her brain has been the biggest concern, but the degree of concern has been pretty vague.  But this doctor explained it.  Now I get it.  The number of extra copies of genetic material determines the prognosis.  Elliana has 2 extra 'p' (plus a little more) arms of a chromosome.  That means there's more genetic information for the body to process.   All of the cells in her body have too much information to process, and that is what leads them to believe that she won't be able to survive. 

The doctor compared it to another very serious genetic disorder, sickle cell anemia.  All it takes is a very tiny variation in one gene to cause sickle cell anemia.  Elliana has several affected genes, entire pieces of chromosomes missing, and extra copies of some genes.  It's too much for her body to process.

I'll summarize the rest of our conversation with the doctor because it's just so depressing and difficult to talk about, at least for tonight.  The doctor believes that Elliana will probably be a full-term baby.  There's no reason to believe that she'll be born prematurely.  After she's born, she may live for a few hours or a few days.  We may even be able to bring her home.  They'll make whatever accomodations we request. 

A genetic counselor has suggested more than once that I contact Kids Path, an organization that helps children and families who are facing a poor prognosis.  They also help couples like us who are anticipating the birth and death of a baby.  I've been putting off making this phone call for weeks.  It's just been too difficult to think about.  But I called yesterday.  One of the things they do is help parents put together a detailed birth plan.  Jason and I have talked about what Elliana's birth might be like, but it's so difficult to talk about, and there are so many things we don't know.  As awful and horrible as it will be, I will be meeting with this kind lady, Kate, from Kids Path who will help us think through a birth plan.  She will also be our advocate at the hospital, making sure that all staff who are involved with Elliana's delivery are aware of our wishes.  If it's possible to feel anything 'positive' about any of this, I feel a degree of relief, knowing that there will be somebody speaking for our family.  Someone who can be my voice when I'm in the middle of the worst day(s) of my life. 

And then there's this quiet nagging voice in my head that says, 'God is bigger than this.  He knows how many extra chromosomes she has.  He created her.  He makes no mistakes.  He could have a much bigger plan for her than we can see right now.' 

After today, with hopes crushed again, I really wish that voice would go away.  It's too hard to get my hopes up and then be devastated at these appointments.  And I don't think I can be hopeful and realistic all at the same time.  My heart doesn't know how to do that. 

 

24 weeks, 3 days

Jason and I have a doctor's appointment this afternoon with the maternal-fetal specialist.  Days like today are so difficult - I've gotten my hopes up that maybe things will look better, but I'm fearful that things are just as bad as they were 4 weeks ago, and all of the conflicting emotion makes me feel nauseated.  It's going to be a long day.

BUT - we get to see our little girl wiggle and squirm today.  Of course, most of her squirming is probably a desperate attempt to get away from that really aggressive ulrasound tech.  That woman doesn't show any mercy.  She uses that wand on my tummy like she's kneading dough.  Poor Elliana - might have to reward her after the appointment. :-)  Might take me all day to figure out what sounds good (this pregnancy has been the WORST for finding things that sound good to eat), but surely something in Greensboro will sound good by the time we leave the appointment.  

Here's hoping for a better prognosis today.

23 weeks, 6 days - New Diagnosis

I've discovered that I really don't like coming up with titles for blog posts.  I'm not that creative and thinking of titles takes too much creative energy for me.  I think I'm just going to use my 'pregnant age' as a title, and if I can think of a brief description of what the post is about, I'll add that.

**Completely different subject - Seth's surgery went fine yesterday.  It was a difficult day, but it's over.  The hernia has been repaired and my baby is home safe and sound.

Late yesterday afternoon, I got a phone call from our genetic counselor.  She said that the lab had done some more testing and that they were able to identify the entire extra chromosome.  This really surprised me - I was under the impression that they didn't think they'd be able to figure it out.  I sort of wonder if some lab technician was a little obsessed about figuring out Elliana's mysterious extra chromosome.  :-)  He or she is probably top dog in the lab now, the envy of all his/her coworkers, having identified this extremely rare disorder. 

Anyway, the mysterious extra chromosome is actually 2 extra parts of chromosome 9 attached to each other.  This stuff is sort of interesting to me (and my mom likes pictures), so I've tried to think of a way to 'picture' it. 

Any normal chromosome looks like this:

pppppp--qqqqqqqqqqqqqqqqqqqqqqqq.

Each chromosome has a bunch of black lines going across them, sort of like a bar code.  This is how the lab can identify each chromosome.

If I understand this correctly (and I may not), Elliana has two copies of chromosome 9 like she's supposed to, but she also has 2 extra copies of the 'p' arm, plus part of the 'q' arm, and all of those pieces are attached to each other in a mirrored image.  So her extra one looks sort of like this:

pppppp--qqqqqqqqqqqq-/-qqqqqqqqqqqqq--pppppp.

Elliana's diagnosis is Complete Tetrasomy 9p. 

There are only about 50 reported cases (that the genetic counselor could find) of Testrasomy 9p, and many of those are a different form, called Mosaic Tetrasomy 9p.  The difference between the two is that Complete T9p affects all cells of the body while Mosaic T9p only affects some cells of the body.

The rest of the information I have about this disorder sounds similar to what we've already heard.  The prognosis is still poor.  The prognosis is poorer for babies with Complete T9p versus Mosaic.  If they make it to birth, 2/3 of infants pass away within the first 2 months.  The other 1/3 have moderate to severe medical issues and delays. 

I'm looking at all of this information, thinking through the circumstances, and processing this new information - and trying to see the meaning of her name in all of it.  And I just can't see it right now.  I know it's there.  I know my Father answers prayer.  I think I just don't like the answer.

Tomorrow, my littlest boy (Seth, not quite 2) has to have surgery.  It's minor - a hernia repair.  But it's surgery, and it scares me to death.

I shouldn't be as scared as I am.  Missy's had several surgeries, and Levi's had the exact same surgery Seth is having tomorrow.  We've been through this before, and everything has been fine. 

But I'm terrified.  Thinking about how something might go wrong.  I know things go wrong very rarely, but I also know:  very rare things do happen.  We know this first-hand. 

Please - please, Father - keep my baby boy safe tomorrow.

Our Choice

The day we found out our daughter was not likely to live long after her birth, we heard several phrases we had never dreamed we'd hear.  After my first ultrasound that day, the doctor came into the exam room, introduced herself, and said to me, 'Let me just examine you real quick.'  Jason asked if everything was ok with the baby. Her response - (pause) 'I'll get to that in a minute.'  Then she said things like 'I saw several things that concern me', 'malformations', and 'We can talk about your options.'

Options.

We heard that word twice that day.  The maternal-fetal specialist also told us that we could discuss our options.

I'm not sure why, but I asked both doctors what our options were.  I knew that they were talking about either continuing the pregnancy or terminating it.  But I think I was also desperate for a third option.  As ridiculous as that sounds.  I have no idea what I thought that third option might have been.  There had to be another option - because I couldn't bear the thought of carrying this dying baby for another 22 weeks. Neither could I bear the thought of taking her life.

There was no third option. 

Our choices were:  continue carrying her or have an abortion.

Jason and I are pro-life.  But this is not a post trying to convince anybody that we're doing the right thing.  And I'm not writing to defend the pro-life movement.  Neither am I writing to slam or condemn those who are pro-choice.  I'm writing because, after hearing our daughter's prognosis, some have judged us, and some have commended us.  And while we are hurt by judgment from others, we are also extremely uncomfortable with a commendation. 

Jason and I aren't idiots.  We know that we have friends, maybe family, and coworkers (Jason's) who believe differently from us.  In NC, it's legal to have an abortion before 20 weeks.  And apparently, it can still be done up to 22 weeks if you go to a particular place in NC (the doctor told me where, but I have no clue what he said).  With such a poor prognosis for Elliana at 18 weeks, we still had plenty of time to have an abortion.  And after hearing about what's going on with us, the looks on some peoples' faces have said, 'Are you insane?  She's going to die anyway.'  Those looks hurt.  We know this is insane.  We know she's probably going to die.  Yet, if you believe in the freedom of choice, please (politely) respect the choice we've made.  (And please 'hear' me say that with the kindest tone - there's no anger in that statement.)

On the flip side, this is why I'm so uncomfortable with being 'commended'.  Our choice to continue carrying Elliana was not easy.  We both knew we couldn't terminate the pregnancy.  We couldn't have taken her life.  Too traumatic.  Too much guilt.  Too much judgment.  We couldn't have done it.  But I am so ashamed to admit that at that moment, when we had to make a choice, I didn't 'choose life' out of love for Elliana or conviction of my beliefs.  I chose by default.  The choices were 'A' or 'B'.  There was no way I could have chosen 'B'.  So... 'A' was all that was left.  And even then, I still looked for a way out.  I hoped beyond hope that there was an option 'C' that maybe I didn't know about - because the thought of carrying a baby with a death sentence to term was (and still is) gut-wrenching.

All of that said, I do not regret our choice.  I think I'm even thankful that there wasn't a third option, and that there was no choice but to continue carrying her.  I love my sweet girl.  The more she grows, the more I hope.  Her kicks help me to remember that the doctors can't tell her what the prognosis is.  I do have hope - but I can't say that I'm full of faith.  Hardly.  Most of my days are spent avoiding people and hiding in my house with the curtains and blinds closed, as if I can shut out the world.  Many of Elliana's kicks bring me to tears because I know what the doctors say.  And most of my thoughts surrounding her birth are different versions of the worst-case scenario.

So... please don't 'commend' me for the choice to carry her.  It wasn't brave.  I was very weak in that moment of choice.  The agony I've just described of  'making this decision' proves me anything but brave. 

So when you think of us, whether you 'approve' of our choice or 'disapprove', please just pray for us.  Pray for our strong, kicking little girl.  Pray for the doctors who will examine her upon her birth and make recommendations about whether to fight for her or let her go peacefully.  Pray for our other 4 children and their relationship with their sister.  Pray for our marriage.  Pray for faith for us.

Reckless Love

When Elijah was a newborn, his birthmother had about a month to change her mind.  I so vividly remember holding him and being fearful of getting too attached to him - because I knew there was a very real possibility that I might have to hand him back over to her.  I remember struggling so much for those few weeks, wanting to love him wholeheartedly, to love him with all that I had, and to think of him as 'mine'.  That day did come - May 3, 2002 - when he was officially 'ours'.

When our first foster baby was placed in our care, I remember struggling in a similar way.  I wanted to give him my heart - and I did - but I was so fearful the entire 6 months he was with us that I'd have to say goodbye to him.  I think part of me wanted to put some distance between him and me, to protect my heart from getting hurt.  And my heart did break the day he left us.

There's no hesitation this time.  Elliana has my heart. 

This song came on the radio the morning I was on my way to that ultrasound on July 3.  The entire song speaks my heart, but the most meaningful lyrics are these:  So let me recklessly love you, even if I bleed, You're worth all of me, You're worth all of me.

All Of MeAfraid to love
Something that could break
Could I move on
If you were torn away?
And I'm so close to what I can't control
I can't give you half my heart
And pray He makes you whole

You're gonna have all of me
You're gonna have all of me
'Cause you're worth every fallen tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
Giving you all of me is where I'll start

I won't let sadness steal you from my arms
I won't let pain keep you from my heart
I'll trade the fear of all that I could lose
For every moment I share with you

Heaven brought you to this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me