Monday, December 29, 2014

Well, I made it through Christmas

Christmas Eve was three months since Psalm was born and died.  I hadn't reckoned to mark it, but I did.  I shared a couple of pictures on Facebook.  This was one of them:

She was so, so tiny.  I will never get over that.  I think I said here before I think that about half of her was just not there and that's part of it, but of course she was a near-term preemie as well.  And I remember the feel of her little head in my hand, of her sweet, soft skin, of her silky hair.

Christmas Day was not easy.  The older girls' father actually bothered taking them for his half of vacation this year for the first time ever, so I was missing them and then missing my girl too.  Three months old on her first Christmas would have been awesome!  At that age they're pushing up and looking around at everything.  I've never had that at Christmas before, always either a pretty old baby or else a little lump of cuteness that doesn't really do anything.

Such a large part of this grief is realizing what you don't have...

I decided to take my usual group photo of the kids the next day when they were all home.  I'd read an article on including a deceased child in some way in future family portraits and decided to do something of the sort.  I put our little pink tree in the gift unwrapping chair along with her heartbeat bear, and added the portrait of her we had on the table at her memorial service, then had the kids stand around that.  Turned out pretty nice:


Of course, that smiling blonde girl there is the same as this girl here:


So you can imagine that the execution didn't come off so well.  I got four pictures taken before Ro burst into tears and I spent the next hour or so trying to calm her down.  She was doing that ugly crying like an animal in pain.  To say she is my sensitive one is an understatement.  I know the feeling, of course.  The difference is she hasn't had the expectation of keeping things in control beaten into her yet, and I really hope she never does.

This is another of those entries without any real point, by the way...

Tuesday, December 16, 2014

Getting through


You do whatever you can to get through the holidays.

For whatever reason, not being able to buy Psalm gifts was bothering me.  It occurred to me, though, that I could actually buy them, I just couldn't give them to her.  I'm donating other things in her name, after all, so why not this too?

Initially I was going to donate to either Toys for Tots or Elf Louise.  This thing at Walmart, though, turned out to be easier.

Like I said in my previous post, Psalm would be three months old Christmas Eve.  So we went to the baby toys to find something for her.  The older girls weren't that into it, but the youngest three kids were, especially Esther.

It didn't occur to me until just now that the two things we donated were emblematic of her two youngest siblings.


This is what Marie picked out, with my help.  (I offered her two choices, and this was the one she took.)  Owls first started being a big thing when I was pregnant with her, so she's got quite a few owl toys.  The odd thing is, I usually don't go for pink stuff, given I've got five girls, but this just got me.  I'm sure I would have actually bought it for her had she lived.


Doug picked this out.  He loves balls.  Ball was, in fact, his first word.  This is a little plastic ball with a smaller ball in it that I think has a bell inside. 


Naturally--and I should have expected this--though Doug was perfectly happy to toss the ball in the donation bin, he was not as happy when he realized he couldn't take it back out.  But he got over it quickly.


Esther and Marie.  I forgot that Esther had wanted to be the one to toss this toy in and told Marie she could, so they had to do it together.

The whole thing was rather more emotional than I expected.  Why don't I expect these emotions?  I'm not too good at this feelings stuff, it seems.  I wanted so very bad to have a baby girl to give that owl to.  And I don't.

Friday, December 5, 2014


Advent

Advent is a season of hope, of anticipation.  The new Church year has begun and we await the birth of our Savior.

This is a shitty season to have just lost a baby.


In some alternate world, this is the first handprint of many that will be made by my sweet Psalm as she grows.  I would have spent the last ten weeks rubbing my thumb across the lines in her palm and kissing her fingers one by one.

On 24th December, Psalm would have been 13 weeks old.  Three months.  Three month olds can do a lot.  They can hold their head up.  They can track you when you are walking by them.  They can roll around, though probably not roll over.  They're starting to nom on everything.

I bought little diapers when I was pregnant.  Fitted diapers.  Tiny little things, that in the end were too big for her and wouldn't have worked anyway because she only had one leg.  I think oh, she would have been a big baby when she was born.  I think.  She was 4lbs 6oz.  They say they grow half a pound a week, which would have put her at only 6lbs 6oz at term four weeks later, but if she had been healthy she would have weighed more because she wouldn't have been missing a leg and her chest would have been bigger and honestly I have no fucking idea why I am typing this.  It's just word vomit at this point.

We went to church Sunday for the first time since Psalm's memorial service.  Well, my mother and the kids and I did.  Erik had a headache and stayed home.  We went to Resurrection, which is closer to us than St. Mark's.  They had a guest priest, because theirs in in Europe.  Her sermon used pregnancy as a metaphor for Advent, briefly.  How you wait for this child and then she comes and you are then presented with all the potential this child has, you get to think of everything she could become.

And Psalm, she couldn't become anything.  She is written on my heart forever, but she will never grow up, never have dreams, never....never...never...

Also, this song tears me up every damn time I hear it, because Psalm was supposed to be born in late October in San Antonio:

Thursday, October 30, 2014

Everyday

A while back, one of my Facebook friends said, on a status about having to call the insurance company to tell them Psalm had died, that it's the everyday things that get you the most.  He was right, of course, in more than just dealing with the insurance company.

I didn't commemorate a week of her death, or a month.  Her due date was commemorated with her memorial service.  I don't foresee myself especially marking three months, or six, but perhaps I will.  Right now, grief is at the same high level every day, and there's no reason for me to stop and say "Oh, it's been this long", because it all feels like one long day.

Still, it's the everyday things that get you.  The van is parked, broken down, and to go anywhere we walk half a mile to the bus stop and as we go I feel Psalm's lack; she should be tied to my chest in the mei tai, carried along up next to my heart.

Halloween is a favorite holiday of ours (as so many other people), and when I first found out I was due in late October I started thinking of a teeny tiny Halloween costume and it fucking sucks to be walking through Wal-Mart and see all the tiny little Halloween-themed onesies and pajamas and have no baby to buy them for.

And there are babies everywhere; October is high time for them because January is so cold.  Some time ago, at Wal-Mart to buy some things we needed, I saw a tiny little brown-haired baby girl who couldn't have been more than a week or two old, as Psalm would have been, and I had to go outside and cry where her parents couldn't see me.  San Antonio is a bad town to have brown-haired baby girls make you cry, but I have since discovered that seeing any newborn hurts like hell.  Clearly, I should just stop going out, but of course that is not practical.

I can feel her with me.  Not a ghost, unless ghosts are a manifestation of the survivors' sadness, but she was my sixth child and after five children you know how a baby feels in your arms.  And my arms are empty, but I can feel where she should be; I can feel her small weight as though she were there, and perfect.  I think often of how much she looked like her daddy, and how dark and wavy her hair was and how like Marie she would be.  Strong, stubborn little girl.

Grief is a strange thing.


Thursday, October 23, 2014

So many things...

It occurs to me that I haven't posted very many photos of Psalm here, so I am to rectify that today...


I would take your pain away and hurt for you if I could, but I fear that doing so would mean taking away some of the love you feel as well, because those are the two sides of the same coin.  Still, I hate like hell that there is anyone else out there who knows exactly how I feel.

There's been another baby born to the support group, a wee tiny boy who lived a quarter of an hour.  And oh, my God, the pain.  The remembered pain.  I ache for his mother because now the pain isn't an abstract thing, it's an exact thing.  I know how it feels to wake up with empty arms and empty womb and oh, my friends, I cannot explain it to you and I hope like hell all you can do is imagine it yourselves.


God's cruelty is refining. (Stephen King, Desperation)

There are dark thoughts that will not leave my mind.  No thoughts of harm or wishing I wasn't here.  Nothing that serious.  Worries about my girl.  When she opened her mouth at me and grimaced at first I thought she was in pain, but I rationalized it as her trying to cry.  But what if I'm wrong?  What if those were frantic gasps for breath, with underdeveloped lungs too small to pull in air?

Just the same, she opened her eyes and looked at me and I saw there the wise look that all newborns have.  But someone else interpreted her look as fright.  What if she was right?  What if Psalm was frightened by the lights, by the noise, by her own failing body?

How much of what we tell ourselves about death is true, and how much of it is lies to make ourselves feel better?  We presume there is little to no pain, that it is somehow a serene slipping away, but there's no way to know that's true.  And that troubles me, because I made the best decision I could for her but there's always the chance that my choices were the wrong ones.


We mamas of lost babies have been called strong.  After a while, this becomes a burden.  We're not strong.  We're just doing what we have to, just putting one foot in front of the other and moving forward because while your heart is beating and you are breathing, there is no other choice.

I have no strength left in me.  None.  I have given all I have to other people, and I swear to God if I hear one more line about men being stoic and holding up things for their families I am going to scream.

We had Psalm's memorial service this past Tuesday, on my due date.  Dry-eyed, I arranged to have a photo blown up to display at the service, and I packed her green blanket and the little baby book from Sufficient Grace ministries to act as a guest book and I took them and I laid them out on the table.  I thought the service would be the time to cry; I told the girls this was the time we are given to be sad.  But I'm the one who had to stand up and be strong for those who were crying.  I'm the one who has shed her tears hiding in the bathroom more often than not so I don't bring others down.  I'm the one who went outside after seeing her death certificate and her ashes so I would bother no one with my grief.  I'm the one who kept quiet about how fucking much it hurt to have a friend's child born on my due date because I didn't want to upset my husband with the knowledge it was happening or the friend with the knowledge of how painful it was.  I hurt physically and emotionally and I am sucking up both sources of pain because that's just what the fuck I do.


Just fucking once, I wish someone would speak of my daughter as though she was a normal baby.  As though her presence was the presence of a real person, not the embodiment of...something.

I posted to Facebook the video the midwife gave us of her moving around and making faces and kicking me in the face.  When it happened, it was a happy moment because here I am cut open on a table and my newborn is kicking me in the face.  Yep, she's my kid for sure.  Grouchy as fuck and kicking.  There was nothing beautiful or precious or anything about that.  It was the closest thing to a moment of normalcy we got that day.  But I guess it's not realistic to ask other people to look past the circumstances and see the moment for the moment.  I realize Psalm isn't really real to most people, and that most folks have a problem with seeing any newborn as a 100% human human, but I just want some tiny little slice of normal to cling to because otherwise this is just an ongoing nightmare.


Wednesday, October 8, 2014

All that girl wants to be is loved....


What we have done is not because of being strong.

It is not because of pro-life beliefs.

It is not because of faith.

All of those things are there, perhaps.  But the reason we continued this pregnancy without a second thought, even though we knew the heartbreak that awaited us at the end of the road, is simple:

Love.

That is the reason.  I loved this child from the moment I suspected I was carrying her.  I will love her until the day I die, and (God willing) in the life beyond this one.

This has long been my favorite Bible verse, 1 Corinthians 13:1:

If I speak with the tongues of men or of angels, but have not love, I am but a resounding gong or a clanging cymbal.

The ending verse of the chapter (the one that contains the "Love is patient, love is kind..." bit that is read at so many weddings) is more famous, and equally applicable here:

Three things remain: faith, hope, and love.  And the greatest of these is love.

It is all about love.  Jesus said "This is my commandment.  Love one another as I have loved you."  (John 15:12, remarkably nearly the same in every translation.)  I'm nowhere near Jesus levels of love, but I love as much as I can.

My uncle, who was like a father to me, was Wiccan; they believe in a Spiral of Rebirth, rather similar to the Hindu belief in reincarnation, where you are reborn as many times as you need to learn the lessons you need.  And I was thinking about this, and the question arose "What could a person need to learn that a 90-minute life is long enough?"  And the answer is obvious.  She needed to be loved.  And so she was.

Monday, October 6, 2014

Sometimes it comes out of nowhere

I was listening to Pandora last night.  Otis Redding radio.  Motown, in other words.

A song came on.  "Little Bitty Pretty One."  And suddenly I was almost in tears.

I sang that song to all my kids but one.  I didn't sing it to Psalm.  There was too much else going on for me to think of singing to her at all, to be honest.  Singing to my babies is an intimate thing.  I've always sung their first song to them when it was just the two of us.  And it was never just the two of us.

But I did play her her song, "She Will Be Free".  So there's that, at least.

Not that it's enough.

Wednesday, October 1, 2014

She will be free...

I'm always about a week behind in updating things, and this is no different.

Woke up early last Wednesday.  We'd made the decision to go ahead and schedule a c-section, being that it would give us the best chance of meeting our baby girl alive.  This was on Monday.  We wanted to schedule things when everyone could be there--Erik's mom, our priest, the photographer from Now I Lay Me Down to Sleep.

Around 8 o'clock, about 20 minutes after I got up, I felt the first mild contraction.  We decided to take the girls to McDonald's for breakfast and see what happened.  Got in touch with my mother and all went to eat.  By the time the phone calls were made--and along with them, the tentative decision to schedule surgery for the coming Monday--the contractions were coming every three to five minutes.  I'd told Erik about them but no one else.  As we were getting ready to make an HEB run, my mother said she'd stay behind and I frantically mouthed to her that I was having contractions.  We still didn't want to tell the girls anything.

So we made a quick stop at HEB.  Contractions kept coming.  Noticeable but not painful.  We went home and I took a shower and had Erik call in and they said to go ahead and come in.  So we made sure we had everything--prayer shawl, clothes for her, camera (I'd had Erik buy a 4-pack of batteries while we were at HEB, so we had brand new ones), things for the kids to keep themselves occupied.  Erik called his mom and she started in this direction, and called everyone else to let them know we were headed to the hospital to see what was going on.  I called my best friend, Mark, and he said he'd find a way to the hospital.  I made a Facebook post.

We got to the hospital, got parked, went in (with a stop at the restroom for one last belly picture), and went in to Labor & Delivery.  I managed to make it through checking in and registering OK, but in the bathroom where you change--the same one where I'd changed while in labor with Doug--with some other baby's healthy heartbeat filling the air, I broke down for the first time.  And then I got myself together just in time to have to explain to the triage nurse that she might not be able to find a heartbeat, because the baby had a fatal diagnosis and I hadn't felt her move the night before.

And of course, she couldn't.

But then the midwife came in, with the sono machine, and they found her and her little beating heart back on the left side of my body where she'd spent most of her time rather than the right side where she'd been on Monday.

They'd called Erik back at some point, and he was there for the discussion with Katie, the midwife I'd only seen once during my pregnancy, about having a c-section.  She said she'd scrub in and act as nurse and the nurse in L&D triage, Heather, would scrub in as well and stick with us and help out however she could.  A third woman, whose name I don't recall, offered to take our camera and take pictures.

There was one more c-section ahead of me, then they'd get us back there.  Katie went to talk with Dr. Beceiro, one of the OBs in the practice the midwives are attached to, and in the meantime my husband was brought OR clothes and got to watch as I was shaved and otherwise prepped.  This whole time, I'm having regular, acutely painful, contractions, but the monitor was on Psalm-Angel's heartbeat and it was fast and regular and the most beautiful sound I had ever heard.

After a while, Dr. Beceiro came in.  There was a snag in the plan.  Because of the short cord and the baby's organs being fused to the placenta, she was afraid she would have to do a c-section with a classical incision.  This drastically increased my risk of uterine rupture in future pregnancies and meant deliveries would  have to be made between 35 and 37 weeks to avoid any problems.  I knew she wasn't exaggerating--two of the women in the support group on Facebook had had classical incision c-sections and subsequent uterine ruptures.  I could be one more and done, but the risk would still be there.

So we changed plans again.  I'd labor a while longer and we'd see if a vaginal birth was possible.  I'd been checked by Katie and determined to be 1cm dilated.  We'd let things go another few hours, and check again to see if there was any progress.  If not, we'd move ahead with the c-section plan.

After an indeterminate waiting period, we got back to a labor and delivery room.  There was a big couch, and a chair, and the usual warmer setup.  It was incredibly similar to what I'd seen with Doug.  I went to the restroom and then toted my IV pole--I was on fluids to ensure I stayed hydrated enough there'd be no problems with anesthesia--to the bed and climbed in, lying on my left side. My glasses were put on the bedside table.  I cuddled Erik close and tried my damnedest to relax during contractions.

At one point, the on-duty chaplain came in.  Wonder of wonders, she was Episcopalian.  She anointed me and prayed with us.  Psalm-Angel could not, she said, be baptized once she passed, but she could be blessed.  She brought the kids in a few at a time for hugs and kisses and promised to return in a couple of hours with a book and some literature.

Heather, who'd come over from L&D, came back and hooked me up to the heartbeat monitor again.  Psalm-Angel's little heartbeat filled the air.  Katie came in and checked me--still 1cm.  No change.  By then I'd been in labor 8 hours, so it was fairly obvious nothing would change.  I had tried, but a c-section it would be. I was terrified of the specter of a classical incision and the decision of how many children to have being taken away from us.

Things moved fairly quickly after that.  The priest stopped by one more time and gave us the promised books and pamphlets, commiserated with us about the surgery, and said another prayer for all of us, including something in there about guidance for the surgeons.  By 5:32 I was in the OR facing my other big fear--anesthesia.  I'd last had a c-section ten years earlier, and placing the spinal had taken longer than the surgery.  As I told everyone involved, I'd quit counting after the fifth attempt to stick me.

The anesthesiologist this time was much better.  It only took two very quick pokes and he had the epidural placed.  I was unsure about this rather than a spinal, as I'd been bullied into an epidural with Marie that hadn't given me much relief at all.  But this time it took quickly and well, and I was numb in almost no time at all.  Erik was brought in from his nervous hallway wait, the room filled with personnel, and things got started.

The thing with epidurals is that they can evidently have a "window" where the anesthesia suddenly works poorly or not at all, and I was lucky enough to develop one of those toward the left side.  The pain was abrupt and unexpected, but honestly no worse than natural childbirth.  I told the anesthesiologist right away that it had started to hurt like hell, and he sent more medicine down as the doctor was, it felt like, trying to yank my innards out forcibly.  It was explained to me that this was them breaking up scar tissue--they hadn't gotten to the baby yet.  I closed my eyes, gripped Erik's hand tightly, and tried to breathe through the pain.

Suddenly, there was a commotion, something was said to me, and a baby was laid on my bare chest.  She was wrapped in a couple of blue-and-green OR blankets or something similar, her arms and head free.  She opened her little mouth in what first looked like a grimace of pain but I realized was an attempt to cry.  I wrapped an arm around her and kissed her wet little head and when she opened her eyes and gave me that wise newborn look, I lost my composure yet again and started to cry.  I kissed her over and over and told her how much I loved her and how glad I was to meet her and how sorry I was to not be able to fix her.  She opened her eyes a second time to see her daddy, tried again to cry, and kicked me in the face with the little foot that had been up by her face for however long.  She closed her eyes and I thought she had died, but the midwife came and checked and said she was still alive.  Erik held her.  Many pictures were taken.

They took her off to the warmer and I think Erik went with them and they got her detached from the placenta and wrapped in the more familiar white with pink and blue stripes hospital blankets, and the little pink and blue cap covering a huge amount of hair.  They discovered she was improbably hanging on and brought her back to my chest.  I was told I could take the other arm too and hold her, so I wrapped both arms around her and went back to crying and kissing her.  I told her she could go home whenever she needed to, but I was sure glad to have her.

Then, good news.  Because of the time I'd spent laboring--time I'd felt wasted because of the outcome--it turned out the doctor was able to do a c-section with just the low transverse incision.  No classical.  No on-purpose preterm babies.

We were moved back to a recovery room.  I had her in my arms the whole time.  The kids and  my mother and Erik's mother and Mark all came back to see her.  She had her eyes closed, lying on my chest.  Everyone saw her and fussed over her and kissed her.  I held her.  I saw her lips were turning dark.  At some point I felt her fly away.  I don't know how I knew she was gone, but I did.  Family out, Mark still there, the midwife checked her again and said she had no heartbeat.  A neonatologist was called in to pronounce her dead.  Mark was there.  Ashley, the older of Erik's two sisters, came back at one point with her daughter Hadley, and stayed momentarily.  Then they both left.

Still, we stayed.  My daughter, now lifeless, lay on my chest.  I stroked her dark hair and her smooth cheeks, tried not to notice how little of her there was.  I'd declined the chance to see her unwrapped as Erik had.  Going into it, I had thought I would want to see everything, but at the time I just could not.

Psalm-Angel Guadalupe was born 24th September 2014, at 6:10PM.  She was pronounced dead at 7:48PM, a technical lifetime of an hour and thirty-eight minutes, though as I said I know she passed before that.  As far as babies with LBWC go, it was a long life.  I've been told of one baby who lived two hours, but most lived for much, much shorter times.  As I said some time ago, the miracle I prayed for was to have her born alive, and that is the miracle I was given.  Ask, and it shall be given unto you.

There are other things to talk about.  Her bath.  How lovely she looked in her dress and blanket.  Her Baptism by the on-call chaplain, a Baptist minister who arrived shortly after she was pronounced.  Her professional photographs.  But these things run together in my mind.

What stands out is this.  She was born.  She looked at me with the same utter love that my other newborns have.  She spent very nearly all her life in my arms or her father's.  She knew nothing, nothing but love her whole life.

I woke up in the hospital the next morning, in pain from the surgery, aching to hold my daughter, and this song was in my head...not the one I expected, but a good one, and fitting

She will be free
like the leaves floating in the wind and the stream.
She will not be bound
by anything that tries to drag her down.
All that girl wants to be is loved.
Her heart is a river in my blood.


Tuesday, September 16, 2014

35 weeks

These are my tickers:



These are just guesses, really.  I probably don't have thirty-five days left.  But I'm already past what I thought I'd get, so I'm out of making guesses.

Time to revisit the births since I have some new info thanks to the support group.  I finally found not one but two people who delivered at 37 weeks! So, current info:

  • 27 weeks: 1 birth
  • 28 & 29 weeks: 1 birth
  • 30,  31,  35, 37 & 38 weeks: 2 births
  • 32 weeks: 5 births
  • 33 weeks: 4 births
  • 34 weeks: 7 births
  • 36 weeks: 3 births
Thirty-four weeks is still the most common, but I'm already past that.  Average length if my math is correct is 33.25 weeks.  I'm already past that.

Here's what it looks like from here on out:
  • 35 weeks:  2 births
  • 36 weeks: 3 births
  • 37 weeks: 2 births
  • 38 weeks: 2 births
So, from here on out 36 weeks is the most common time, but there's barely any difference.

I'm already thinking I've won the lottery insofar as this condition goes.  I mean, not that there's a happy ending, but this pregnancy has lasted longer than I expected.  Out of 32 total births that I have the info for, only 9 have lasted at least 35 weeks.  Tiny sample size, to be sure, but to me it's still significant.

Baby Girl seems to be doing pretty well in there.  I mentioned to the midwife at last week's appointment that she was moving a lot more than I expected her to.  She had somehow managed to move a little bit past midline on my stomach; Lauren found her heartbeat on the right side instead of the left.  I am pretty sure she's moved back to the left, but I still feel her reaching over to the right a little bit.  It's pretty cool.

I'm still not in a good place emotionally, but I'm trying hard to appreciate what I do have.

Tuesday, September 9, 2014

Fleeting

Lately this has all seemed incredibly unreal.

Today I have made it to thirty-four weeks.  I've had a few Braxton-Hicks contractions, but that's it.  The baby is moving quite a bit, I felt her just as I wrote the previous sentence.  I've felt kicks or something at the top of my stomach; I feel a huge amount of movement down at the bottom, little hands tapping, little head butting.  Midwife appointments have been mostly routine--I've gained a pound here and there, excellent blood pressure, baby's heart rate is good, uterus is growing as per usual.

Everything is normal.  Except, you know, for what isn't.

I'm a smart gal.  Intellectually, I got this back in May.  That bubble above baby girl's abdomen--where all her organs should be--was so very obvious on the ultrasound I saw it and noted it long before I knew what it was.  There's no question here, no equivocation.

But lately I've been having a hard time with it.  Harder than in the recent past, even.  We had boy and girl names both picked out before we went to the ultrasound.  I'm happy with the name she will have, and I've no interest in changing my mind, but in the back of my brain I keep wanting to call her by her other name, because goddamn it this is all so normal.  I can't be waiting to kiss Psalm goodbye; I must be waiting to bring Susan home.  Intellectually I know what will happen, but my lizard brain won't believe me because I know how pregnancy goes and this is a normal pregnancy and that means things must be fine.  (I suspect this is how one keeps from becoming a gibbering fool, by the way.)

The childbirth dreams have come back, with an unearthly tinge of nightmare to them.  I've awoken in the middle of the night and been shocked that my amniotic sac is intact and the contractions were ephemeral.  I dread childbirth every single time, of course, because it hurts like fuck even with the good drugs, but this time it's ten times worse.  I am terrified.  Scared the baby will come on a weekend when the older girls are with their father.  Scared I somehow won't have time to get to the hospital.  Scared there will be hemorrhaging.  Scared I'll wind up in surgery.

And...I just want to be past this.  I want to be done with it.  I want to at least know whether I have two days or two weeks or another month or something altogether different.  I want to be able to wrap my daughter in my arms and bring her home with me and have her take her rightful place as the much-prayed-for fifth girl.  But at the same time I can't bring her home, I know that, and I don't want her to go anywhere.  I want to keep on feeling her little hands every morning and afternoon when she taps me to say Hi, Mom.  I want them to have been wrong but I know they weren't and it's just fucking overwhelming.

Sunday, August 31, 2014

One more day

Really, 12 more hours.  And then I will be out of August.  Baby girl is doing good at the moment, I've had two periods of easy-to-feel movement today.  So it looks as though I won't have to worry about an August baby after all.

Little victories.

Friday, August 29, 2014

Strong girl.

Thirty-two weeks and some change today.  I made a ticker, just so I can check it here:


baby development

Baby girl is wiggling more than I thought possible.  Her heart rate is still strong, in the 150s again this morning.

Midwife at last week's appointment said Psalm-Angel is tough.  I've said I'm not strong, but she sure is.  And she's my kid, too, so she's stubborn as hell.

I know it won't matter in the end, but for now I will enjoy it as long as I can.

I am at that horrible point where I am simultaneously wanting things over with because they are so damned stressful and terror that they will end soon.  I mean, I don't actually want this pregnancy to be over with, because it means my daughter's life will be, but there is an absolute heaviness to the waiting and the not knowing.

And suddenly, there is nothing more for me to say today.


Sunday, August 17, 2014

The hardest part, for me...

…is not the knowing what, but the not knowing when.

We know what's going to happen, and we get ever so closer to it with every tick of the clock. And Every day I wake up wondering, will this be the day? And it's so damn hard.

I still don't know what I'm going to do. This is all entirely new to me...

Her little face


Somehow, knowing that Psalm-Angel is a girl has me feeling more connected to her.  It wasn't a piece of information that meant a huge amount to me...until I had it.

Thursday's appointment involved an ultrasound to make sure she's in a position where she can be delivered vaginally.  Though I was told the tech would be the same one who performed my anatomy ultrasound, it was someone different.  This woman was much nicer and gave us three 3D pictures of Psalm-Angel's little face.  She managed to get better photos than the woman at BabyVision, even (though I still think what we got there was amazing).  She seemed surprised by how vigorous the baby is and how much she was moving around.  As always, baby girl is doing just fine as long as she's inside me.

I went into the appointment scared, because I barely felt any movement at all for three days leading up to it.  The morning of, while waiting for Erik to come out of Valero with drinks, I listened to this song on YouTube on his phone, and she gave me a good strong kick, and I nearly cried:




And now, we are back in waiting mode.  The end of the journey is that much closer (and the gestational age on that picture is nearly two weeks off!), and it's going to hurt like fuck, but I'm starting to understand how much this time benefits me.  There is so much I would have missed out on had I gone the usual route.

In other news, one more baby from the support group has been born into God's arms.  No blog to link to this time.  Another girl.

Tuesday is my birthday.  It'll suck; my birthday almost always does.  As long as I don't go into labor on/have the baby on it, though, I'll consider things a success.

Friday, August 8, 2014

I must admit

I am jealous.

Jealous of ultrasound pictures of babies with smooth, perfect bellies.

Jealous of newborn photos with smiling parents and happiness and all the hope for the future that is the norm.

Jealous of belly pictures and professional maternity pictures and people buying baby gear for their healthy baby.

Jealous, even, of positive pregnancy tests, because I know the odds are overwhelmingly in favor of a healthy, normal pregnancy.

I mean, I'm happy these women are having normal pregnancies.  I wouldn't wish this on anyone.

But I want what they have, and it's not a usual feeling for me.

Wednesday, July 30, 2014

Yesterday was a good day.



Yesterday morning, we had our 3D ultrasound at BabyVision Ultrasound.

Right ear.  Baby looks so much like Doug here.
 I hadn't intended at first to get a 3D ultrasound, though we'd floated the idea.  It just didn't seem right to see the baby ahead of that first meeting.  But given the very real possibility of a stillbirth, the idea of seeing the baby alive obviously took on greater significance.



Now, we went into this intending to pay for it.  We don't make a habit of asking for things for free.  But when Erik explained the situation, they offered to do it gratis.  Given that, I expected a fairly cursory scan and a few pictures.  What we were actually given, though, was a 15-minute scan, seven printed pictures, a CD with 31 photos, and a DVD of the whole scan.  This doesn't neatly fit into any of their packages, but the closest one is $200.  We also wanted to buy a Heartbeat Bear, which is a teddy bear that has a recording of the baby's heartbeat inside, but they gave that to us without charge as well.
This is the heartbeat bear.

So there was that aspect of it; it was amazingly generous.  But the more important aspect of it is one that I can't quantify.  The woman who did our ultrasound was incredibly friendly, and enthusiastic about Psalm-Angel.  She treated the ultrasound like a normal ultrasound and Psalm-Angel like a normal baby.  She showed us his/her ear and arm and leg.  We saw the heartbeat up on the screen.  It was all really amazing.


You can see the baby's heart pretty clearly here.

We had another midwife appointment that afternoon.  It was pretty run-of-the-mill except for needing to take my glucose tolerance test; this required drinking what I called the Devil's Kool-Aid.  I didn't have any trouble with it last pregnancy, but I barely got it down this time around, and got pretty woozy after my blood draw.



That draw also included three vials for the MaterniT21 test.  This is generally used to check for chromosomal defects, but in my case it is more to determine the baby's sex, since there's no other way to do it.  So we'll eventually be doing a reveal for that, which isn't something I ever expected to find myself doing.  It's OK though.



When I was there, I asked Kim whether we could get a printout strip of the baby's heartbeat.  She was willing, and had one of the nurses walk me down to the NST room--the same one where I had my non-stress test for Doug--and I was hooked up for about half an hour and got a nice long strip.  It was good to see, and amusing to hear the baby smacking against the heartrate monitor.

Printout of the baby's heart rate, from the office.

With all this, I very nearly feel a sense of closure.  Of readiness.  I told the baby yesterday, Just a few more days until your sisters get home.  Give me one more week and then you can go home whenever you need to.

Obviously, I don't want it to end this soon.  But I am feeling more ready to face it.

You can see the omphalocele clearly in this picture.

Today I am feeling a bit fragile.  I think this is my new normal for now.  The baby's positioning has me worried.  S/he seems to have an arm up above his/her head and a leg up in front of his/her face.  I am not sure what that means for a vaginal delivery.  I'm going to the midwives weekly from now on, and plan to take a print-out to discuss it next week.

If you look just above the baby's head, you can see both the arm and the leg going up.

The other thing that has me a bit worried is the baby's heart rate.  Until yesterday, it was holding steadily in the 140s, as all my babies' have.  Yesterday it was 123 or so at the ultrasound, 130-something in-office, and varied from the 120s to the 140s most of the time I was hooked up to the monitor, with a couple of worrisome drops into the 90s.  Anywhere from 120 to 160 is normal.  A change from mid-range to the low end makes me nervous, though.  In researching the normal range yesterday evening, I ran across a couple of mentions of the heart rate slowing down closer to birth, but even that said the norm was in the 130s.

This is the heart rate displayed on screen. Very neat.

So I think we may be nearing the end, and even though I am as ready as I'll ever be, I'll never really be ready.

Saturday, July 26, 2014

I said in an earlier post I thought there was only one other woman in the support group I belong to who was also pregnant.  I was wrong.  There are a handful or more.  I'm not sure how many entirely.

I started to write a post yesterday, and didn't, and it turned out to be a good decision as these things go, because things have changed.

The thing about a diagnosis like LBWC is this.  You know the outcome.  You just don't know when the outcome will happen.

This week, two women in the group have birthed and lost their babies.  One, on Wednesday, who was in the same week of pregnancy I am in.  I read her announcement as I was feeling Psalm-Angel move around inside me.  The other was just today; she was further along.  But the outcome was still the same.

***

On a different note, I want to update my earlier research into how long these pregnancies last with info from the support group (I've done my best to ensure I didn't repeat anyone whose story I have from elsewhere, but it is a possibility).

Previous info looked like this:

  • 28, 29, 30, 35,  36, & 38 weeks each had 1 birth.
  • 31 weeks had two births
  • 34 weeks had 3 births
  • 32 weeks had 4 births.
 This is the new info:

  • 27 weeks: 1 birth
  • 28 & 29 weeks: 1 birth
  • 30,  31,  35 & 38 weeks: 2 births
  • 32 weeks: 5 births
  • 33 weeks: 4 births
  • 34 weeks: 6 births
  • 36 weeks: 3 births
So, that's actually a pretty big difference.  Twenty-nine births total.  New average is 32.9 weeks, so almost 33 weeks, but 34 weeks has the highest number total.  Still, only two people have made it to term.  (Term being 37+ weeks, and what an odd thing it is that no one has given birth in week 37.)

Not sure how much meaning any of it has, but somehow math is comforting

Friday, July 18, 2014

Sigh.

Overheard at work today...

"How's the baby? It's getting close, yeah? October?"

Sigh. "Yeah." It's getting close, all right...

I'm still here. Still not curled up in the fetal position at the prospect of losing our son/daughter, but that sure as hell isn't to say that I don't want to be, or that I'm not having a hard time with this. I'm going along as best I can, but there are still some days.

Like I said elsewhere before, though, sometimes I don't cry. Sometimes my anguish just channels itself into my hands shaking...

Tuesday, July 15, 2014


Finished the baby's blanket, gown, and cap.

The blanket is soft cotton yarn Erik picked out.  The cap and gown are very, very soft alpaca yarn I picked out.

This project was very difficult for me.  There was much starting and stopping because of how much it hurt to make the only things my dear one will wear in this world.

At the same time, though, it was a healing process.  I have spoken before about having to set aside all the projects I had been working on for the baby, and how much it hurt.  Making things I know Psalm-Angel will be able to wear was wonderful.  I've made things for all the rest of my children; this ties this baby in to them.  In to my family.  It's lovely, in the end.



Friday, July 11, 2014

It's not the same

One of the support groups I participate in has the mantra that all loss is the same, be it a miscarriage or a stillbirth.

I disagree with this.

I've had a miscarriage, and I'm now going through a pregnancy with a fatal diagnosis, and the pain is different.

This is not to belittle miscarriage.  It hurts and there is a definite grieving process and in many ways it is very very similar to stillbirth/neonatal loss.  But it is not the same.

Even early miscarriage isn't the same as late miscarriage.  Losing a baby at 8 weeks when you've only just begun to get used to the idea of pregnancy and a baby is different from losing a baby at 18 or 19 or 20 weeks, when you've already started debating names and maybe have even felt the baby move.  And those are both different from going through a pregnancy knowing the outcome will be horrible.

I've been told "I had a miscarriage, I know what you're going through."  No, no you don't.  You can probably guess what I'm going through and how I feel, and you may well even get pretty close, but you don't know.  I didn't know.  I knew what it was like to have a miscarriage, to have a surgical procedure done to relieve the physical pain and realize afterward that nothing's going to help the emotional pain but time and lots of it.

But I did not experience anticipatory grief.  I had not felt my baby move in me, had not treasured hiccups and then cried because once birth arrived, my baby would leave.

Even now, I realize I only know what I know.

I do not, for instance, know what it is like to have a stillbirth when you were expecting a healthy baby.  And honestly, I think that's got to be worse than what I'm dealing with.  I know.  I can prepare.  I had only bought and made a few things; I won't have a houseful of baby stuff to go home from.  I think I get off pretty light in comparison.  (But I don't know.  Maybe there's someone who went through that and thinks it would have been much worse to go through a pregnancy knowing the outcome would be horrible.)

I look at people I know who have lost children...the mom from my due date club whose son was born the same day as mine and who died when the boys were 10 months old, my brother whose 2-year-old died of cancer, my online friend whose 16-year-old died from complications of EB, and I realize that soon I will join them in that club of parents who have lost a child.  But it's a loose club.  Our experiences, while roughly similar, are not the same.  Not even close.

I hope it doesn't sound like I'm keeping score.  I'm not; I'm not trying to set up some sort of loss hierarchy.  Whatever loss a person has suffered is still loss, is still horrible.

But it's not all the same.

Tuesday, July 8, 2014

milestone

Last week I hit 24 weeks.

Usually, this is a happy time for me, as for any pregnant woman.  Twenty-four weeks is viability, meaning that the baby has a greater than 50% chance of living should it be born.

Yeah...

I noticed it.  I always notice it.  It is usually accompanied by a feeling of relief. 

Not this time.  Just more sadness.

The good news is, at my midwife appointment I told Lauren about the ultrasound technician calling someone else in and the two of them loudly discussing what was wrong in front of me, and she was appropriately horrified.  I don't want to get anyone in trouble, but I do want them to know it was insensitive as fuck.  Hopefully they can look in my chart and find out who did the u/s and tell her not to do that again.

Sunday, June 29, 2014

Dreams, and other things.

Pregnancy dreams are a thing.

For me, they are almost always nightmares.  Someone's trying to kill me and the kids.  Bad things happen to one of the little ones.  Zombies.  Lots of zombies.  The occasional evil vampire.  That sort of thing.

I thought I had escaped that this pregnancy.  I have not; it's just come on later than I expected.

I used to have dreams about birth too.  Nearly every time I've been pregnant, I had a dream--usually more than one--where I had the baby and she turned into a kitten.  Doug is the only one where I didn't have those dreams, but I still dreamed about having him.

This time...this time the two types of dreams are intertwined.  It doesn't take Freud to interpret these dreams, you know?  (I've always thought fantastical interpretations of dreams were ridiculous anyway.)  I always act out, in dreams, my fears of what's coming up.

Last night I had a dream I was at home, asleep, and was awoken by blood and water and birth.  And some how in this dream the baby had both legs, and a head of hair, and was a beautiful little baby girl.  And I said "Oh, she's got both legs! Maybe the doctor was wrong, maybe this is just an omphalocele that can be repaired!" and I started working on getting us to the hospital.  There was this weird period of calm where I guess we decided to dress the baby and hold her and she got hungry so I fed her and then at some point her omphalocele fell off and I called for an ambulance and yelled at them to get her, to take her and give her some oxygen because I understood she was dying but we needed to get her to the hospital because her dad wasn't at home and we needed to keep her alive long enough for him to see her.

It was an odd dream, and upsetting.  And not the first one I've had.  I had another dream a few weeks ago where the baby was born far too early and we expected her to be stillborn and yet she was just kind of hanging around, omphalocele and one leg and all, because she just didn't realize she was supposed to be dead.

I mean, that much is accurate.  Most of these babies are miscarriages.  The ones who live on, who get anywhere near birth, are the ones who just don't realize they're supposed to be dead.

I know my brain is trying to work itself around this, to reconcile what I know will happen with what seems like it should happen, still, in spite of everything.  I have been feeling very raw and very sad today, back to the crying and telling the baby I'm sorry my love just isn't enough to save him/her; I really do love the baby as much as I can, as much as I have all my other children.  This baby isn't wanted any less, isn't welcomed any less, isn't loved any less.  I understand, cognitively, that these things happen, but inside, my soul and my heart are confused and upset, because shouldn't love be enough?  I mean, I know it's not, but it should be.


***

I posted as a status, a short while back, a very brief version of my last post.  That I realize people pray for miracles out of compassion, but I'm glad I don't have the sort of friends who do that, because the only miracle possible at this point is Erik and I get to tell Psalm-Angel we love him/her.

And someone said something about how miracles can happen; she knows it because her son was a miracle.  He was supposed to die, but didn't.  And I said nothing to that, because there is really nothing productive to say that would not risk being hurtful.

But really, y'all, there is a difference between a severely ill child, between a baby born very prematurely, between a baby with heart problems but otherwise whole and a baby who is missing a leg, and a pelvis, and a diaphragm, and has all of his/her internal organs on the outside of his/her body, that has a spine bent at a 90˚ angle.  God's not going to make another leg, or straighten out the baby's spine, not going to replace all these missing things.  Or even do a fraction of that.  There's nothing to be done here.  Things are made as they are, and God doesn't go back and say "Oops, forgot a few things" and then make them survivable.  Yes, Jesus brought Lazarus back from the dead, but Lazarus was all there to begin with.  Yes, God gave Sarah Isaac, but Sarah had all her parts that were able to make Isaac.  Jesus performed miracle after miracle after miracle, but that was a couple of thousand years ago, and still there is nothing in the Bible about sprouting limbs and straightening spines.

And if the baby could live with all of these problems, would that really be fair to him/her?  I mean, a missing leg is nothing.  Prostheses totally exist.  Omphaloceles can sometimes be repaired.  But the rest of it?  It's not just that one leg is gone, it's that the other leg is severely displaced because of the scoliosis.  Without a pelvis, I don't think a prosthesis would be even possible.  With a fucking L in his/her spine, I doubt a wheelchair would be reasonable.  With a diaphragm either gone or so small or so out of place it couldn't be found on the ultrasound, with a severely underdeveloped chest because of the ompahlocele, how could the baby even breathe?  At best it would be necessary to inflict surgery after surgery on this child, pain and pain and pain...and for what?  For some unknown outcome?  I'm not an ableist; I don't believe that without everything, nothing is worth having, but at the same time I'm not willing to make my child into a medical experiment just so I can say I never lost a baby.  I've got to love...and then I've got to prove that love by letting go.

Friday, June 20, 2014

Miracles

I have seen the word miracle thrown around a lot in regards to these babies.

Some women pray for a miracle their entire pregnancies, pray that God will somehow make their baby whole. 

We've been told since the beginning by well-meaning people that ultrasounds don't know everything, that perhaps we'll find out it was wrong.  (They just happened to not see a leg or an umbilical cord, somehow, in spite of these things routinely being sighted via u/s.)  I suppose that would count as a miracle on its own.

I've seen Psalm 139:13 quoted quite a bit: For you created my inmost being;
 you knit me together in my mother’s womb.
I keep thinking "Hey, God, you dropped a few stitches."

I don't do well with predestination.  I'm very much a God is hands-off sort of person, almost Deist in my belief that He set things in motion and then took a step back.  

So I don't pray for the miracle of a whole child.  Not that I resent or look down upon those who do.

I still pray for a miracle, though.  I pray for the miracle of some time with my baby.  Just a few minutes, God.  Just enough time to tell Psalm-Angel I love him/her.  Please.




Today's mental soundtrack:

Thursday, June 19, 2014

I don't even have a title for this one...

A couple of weeks ago, I requested a perinatal hospice kit from Sufficient Grace Ministries, and asked to be a part of their Facebook support group.  From the infant death group I was referred to a carrying to term group, and it was there, after I introduced myself, that one of the admin from a group dedicated specifically to continuing pregnancies with LBWC contacted me and invited me to join her group.  (The admin is Sarah Marie, of She Brings Joy and also the informational page LimbBodyWallComplex.net; both of which I have linked here.)

It's a small group, but still larger than I expected.  I suppose it makes sense, though.  If there were 3,952,937 births in 2012, then there were perhaps 282 - 395 babies born with LBWC that year (though it's a rough estimate, since I don't know how stillbirths are worked into the birth rate, or whether they are at all).

The good news, of course, is that I have found a community of people who know exactly what I am going through.  Every one of us is dealing or has dealt with the exact same thing.  I can ask them the questions I couldn't ask anywhere else, and know they will have a good answer.  I was able to read back through old posts and get a better idea of how long people carry (one carried to 36 weeks and another to 38, though earlier births by far are still the norm).  I was able, through photos and replies, to know I can make the baby something to wear; his/her omphalocele shouldn't prevent clothing.

The bad news isn't really bad news.  It just is.  Sharing the journey means sharing the entire journey, and there is simply no happy ending to be had.

This was brought home again yesterday, when one of the members (who seemed to be the only one other than me still pregnant) posted pictures of her little angel.

I actually added her blog just a few days ago.  She has posted about her tiny one here, photos and all.  I am heart-broken for her.  The baby is beautiful, and tiny, and in another world she would be taking him/her home, but not this one.

She knows how I will feel; I will know how she feels.  It's a broken sisterhood, but I am thankful for it all the same.

Monday, June 16, 2014

A few things

I've been going through the Book of Common Prayer supplements and have found a few things that are comforting...





I want these worked into Psalm-Angel's service somehow.  Perhaps there will not be room for the Litany of Complaint, but I love that it is there anyway.

And in reading I found that one of my favorite hymns, though not in the 1982 Hymnal, is nevertheless acceptable for the service.

So this can be sung:


not that

I can respond positively to news of others' pregnancies...

I can smile at ultrasound images...

I can congratulate people on their healthy births...

I can even look at newborn pictures all day long without wanting to cry too much...

But I cannot read birth stories.  Nope.  Tried.  Got through about four paragraphs, then had to stop.  I can take pregnancies that will probably be happy and baby pictures that definitely are happy, but I cannot take birth stories.  Labor has always been a painful, scary thing for me even when I go in with the expectation of a happy outcome.  With the knowledge that only heartbreak awaits...No.  I can't look at it too closely.  I just can't.

Thursday, June 12, 2014

Remember

I'm going to use this post as a reminder to myself of the things I want to do to memorialize Psalm-Angel.  I'll update it when I have something to add.

I'm making/will make
  • crocheted blanket
  • crocheted hat
  • crocheted gown 
  • scrapbook
I don't know if we'll be able to use the gown, but I want to have it anyway.

I want to take these things with me to the hospital:
  • ink pads for hand and maybe foot prints
  • camera and extra batteries
  • scissors to take a lock of hair/baggie to put it in
I want to remember to cut a lock of baby's hair.

Maybe we'll make a shadow box...

Then suddenly...

Hiccups?

Can you even have hiccups, child?  We were told you don't have a diaphragm, and I thought you needed one of those for hiccups.

Ah well, I will enjoy it.

***

Movement isn't something I expect much of this pregnancy.  Between Psalm-Angel being adhered to the placenta and only having one leg, I doubt that much movement is possible.  But I remember the first in-office ultrasound, where s/he had their little hand up by their face and waved and maybe swallowed.  And then s/he slapped at the doppler at the last appointment.  So movement is possible, at least some.

But I wasn't really feeling any.  Until this week.  And suddenly it's a daily thing.  And it's awesome.


Tuesday, June 10, 2014

Planning

We met with the associate rector at church this morning.  Funny thing that; we ran into one of the workers whom I know fairly well, and of course the church secretary is someone I know, and I just kind of ignored why we were there.

Rev. Morehead was wonderfully helpful; she assured me she could come to the church and do a baptism, and also mentioned a naming ceremony.  I have a small copy of the Book of Common Prayer which of course has the funeral liturgy in it and suggested readings to go through.

We've decided, tentatively, to have the service in Bethlehem Chapel rather than the main sanctuary.  It is much smaller, seating about fifty, and the stained glass windows are all devoted to the story of Jesus's birth and childhood, which I find incredibly appropriate.

We still need to contact funeral homes; I have no real idea who to use, or whether it would be simpler to go with a direct cremation.  I suppose making a list and some phone calls is the next step.

But it can wait, for now.

Wednesday, June 4, 2014

How do I say this?

Took the youngest two out to lunch yesterday and today, and the boy napped better than he has for a long time.

Because of the HG, I can't walk much when I'm pregnant.  But I think the outing may be enough to get Doug to nap properly.

So I want to say "I'll start taking them on walks when..."

When what?

First impulse: "Once the baby's here, I'll start taking them on walks daily."  But the baby's not going to be here.

So do I say "Once I'm not pregnant anymore..."?  That just sounds cold.  And wrong, even though it's factual.

In the end, I said nothing at all.

Tuesday, June 3, 2014

Giving the baby as much as we can.

If you knew Sabra or me in real life, you'd know that we love to eat — particularly at certain San Antonio landmark restaurants. Well, we've hit up several of them in the last couple of weeks. What's that got to do with Psalm-Angel Guadalupe?

Well, right after Sabra and I got the news, we got the idea to take him/her to as many of those places as we could before the time came. Why? To give him/her as much of what we do in San Antonio as we could before the time comes. Yeah, there's no Fiesta or Rodeo, but of course there's not a whole lot we can do about that. So far, we've hit up Lulu's (best chicken-friend steak ever, w00t!), Armadillo's, and Broadway 5050. Sabra and the younger two (Marie and Douglas) hit up Bill Miller Bar-B-Q today. And I brought home Whataburger last week. (I should go for honey butter chicken biscuits this weekend…) What next? Most likely Schilo's Delicatessen, this coming Monday.

I can't explain exactly why, but strangely enough, this helps in its own minuscule way.

What the hell am I doing?

In my first pregnancy I was diagnosed with hyperemesis gravidarum (HG); essentially very severe morning sickness.  Unlike some women, I have never needed to be hospitalized for this, but I have become severely dehydrated a few times and had to go in and receive IV fluids.

I've got five kids in spite of this.  I refuse to let my life and reproductive choices be ruined by HG.  I've always taken the viewpoint that it's a tiny bit of my life, and a tinier bit of theirs.

It's worth it, in other words, to get a baby at the end.

The HG is no better this time around.  If anything, it's been worse.  And I'm going through it, and I'm not going to get a baby at the end.

What the hell am I doing this for?

Really, I can understand the women who choose not to continue their pregnancy if there's not going to be a live baby at the end of it.  It's actually a lot of time and effort and pain to put into something futile.

I'm not sure why I'm here, other than it's the right thing to do.

Haunting

(Sorry, that's really the best title I could come up with for this entry.)

Things haunt me. Come back to my brain when I least expect them, namely the memories of the ultrasound. I remember thinking, this can't be happening...

...missing leg...

...heart protruding...

...organs outside of the body...

...no diaphragm...

...rupture...

I remember my brain screaming, NO, NO, NO!

I remember saying, barely out loud to the ultrasound tech, "Rup...ture?"

I remember Sabra saying "Hush" as I said that...

I remember thinking that shit had gone rodeo for sure and certain, when Sabra asked if they could tell if the baby was a boy or a girl. We've always been diehard Team Green fans.

And all of this is going to haunt me until the day I shuffle off this mortal coil.

Friday, May 30, 2014

My thoughts from yesterday.

Like Sabra, I was also quite glad to find that the midwives were going to stay with her. They've always been good to her, and I think it's always good to have as much support as you can, especially in situations like this. I'll be honest. I would have felt that she was being abandoned. (I almost said we, but, well, that would have just sounded weird.) Put it like this: it's like we're heading into this really bad storm in a boat, and there's no way around, and they're along for the ride with us. It would have felt like they were being plucked out and flown to safety. But they'll be there, and that'll be good. I'll be there too, of course, but I am still quite glad they'll be there with Sabra through this.

And no, I didn't cry when we heard Psalm-Angel Guadalupe's heartbeat yesterday, but I came damn close. Other than the damn LBWC, the baby's just fine, heart thumping along like any other baby's. Take that all by itself and you'd never know s/he was going to die. And dear God in heaven I hate to say that, but...ugh. I guess I know the only way to deal with it for me is to face those hard facts head-on.

But I sure as shit don't like it — even though I know there'd be something wrong with me if I did.

Crunching Numbers

I am the sort of person who likes to have info.  (INTJ.  For reals.)  I don't want to have to guess at things, least of all how long this pregnancy is going to last.

So I've done more research and more reading...come across more photos I didn't want to see.  I went through 20+ pages of Google search results looking for both personal stories and case studies of babies born with LBWC.  I eliminated abortions (which were a lot) and inductions to the best of my ability.

I was left with 16 discrete cases.  The babies were all born between 28 and 38 weeks.

Distribution as follows:

  • 28, 29, 30, 35,  36, & 38 weeks each had 1 birth.
  • 31 weeks had two births
  • 34 weeks had 3 births
  • 32 weeks had 4 births.
There were no births at 37 weeks.

The average gestational age for these babies to be born, then, is 32.5 weeks.  The median and mode are both 32.

So, while there is of course no way to be certain, it seems likely that birth will be around 32 weeks--8 weeks early.  I'll be 40 weeks on the 21st of October, so 32 weeks on the 26th of August.

This is otherwise known as a week after my birthday.

Of course, I don't know the baby will be born then, but I was kind of figuring August anyway, for perfectly superstitious reasons: my uncle and niece died within two days of each other in mid-August, ten years ago.  My niece died the day before my birthday.  I can see this happening.

I've wanted an August baby my whole adulthood.

But not like this.



Brightness

Yesterday I had my first appointment with the midwives since the diagnosis.

I love these midwives, I really do.  The care is so very different from what I've received in the past.  They are woman-centered, very positive thinking.

I was so scared I would be sent away.  Risked out.  They are all nurse midwives, and work in concert with an OB practice, and so have to bow to the doctors on some things.

But I wasn't.  The midwife asked whether the specialist had explained my options.  I told her he had, and that I was not going to terminate, but to carry this as far forward as I can.  She warned me that it will increase my risks of c-section, as there are few options for inducing  VBAC patients. 

I knew that, of course, but it's a constant of my life that I may wind up having another c-section and nothing but c-sections from then on.  I'm OK with that, in other words.

(And for the record, it did not come across at all as though she was pressuring me to terminate.  This is the midwife who delivered my son and, when I said he wasn't the last, assumed I was having as many as God would give me.)

That settled, I was given the good news: they are indeed treating this as a normal pregnancy in every respect, even with the known outcome.  I am grateful.  I go back in a month, have my GD test at 28 weeks, etc.

We got to hear Psalm-Angel's heartbeat.  In the 150s again.  S/he slapped at the fetal doppler.  Definitely my child, my easily-annoyed child.  I thought my husband would cry when we heard it, but no.

I am as happy as it is possible to be, right now.


Wednesday, May 28, 2014

I am not

Strong.

I've been called that a lot lately.  And really, I am not.  Not more so than anyone else.

I cried on the ultrasound table.  I cried in the midwife's office.  I cried in the hospital chapel, on the bus, in my living room, in my husband's arms, again and again. 

And I will keep doing so.

Yes, I am going on.  Doing my best to treat this pregnancy the same as any other.

Really, what other choice is there? 

Lie down on the floor and scream and cry? Please.  I've got kids.  I don't have time for that shit.  I do cry in front of them, so they know they can cry in front of me.  I do hold them when they cry, when they shake.

All moms do this.

I am, in actuality, terrified.  I have always been terrified of death, of touching dead things.  I barely got through the whole dissecting a frog thing in junior high.  I don't go to any more funerals than I have to, and I consider open casket funerals ghoulish.  I don't want to be anywhere near these things.

But now, I know I am going to hold my dead baby.  And the thought is terrifying, one of those things that your mind approaches elliptically and then screams away from in gibbering terror.  I'm not somehow OK with this.  I'm scared.  I'm crushed.  I am weak, human.  Uncomprehending of just what's going to go on from here.  Afraid of what it will do to my family.

Again, though, what other choice is there?  This is here.  It is happening.  It cannot be fixed, cannot be controverted.  There is no waiting miracle, no chance that this child will somehow come out whole. 

So we will deal with it.  Because we have to.

Things I won't get to do.

All of this hit me yesterday...

I won't get to bounce the baby on my knee and make up silly songs. ("The Ballad of Princess Fartybutt" was arguably Daddy's finest moment.)

I wont get to hear the baby copy his/her older brother and ask me for "offee" (coffee) or "oda" (soda) as I am drinking it.

I won't get to feel the baby lay his/her head down on my shoulder, just lying there with me.

And all of this, all of this absolutely destroys me, over and over.

(Yes, I know, the "his/her construction may be a bit cumbersome, but I will be damned to hell if I call our baby an "it.")

Tuesday, May 27, 2014

Well, shit.

Saw a joke about a "free tetanus shot"

Remembered the MFM specialist telling me the current recommendation is for pregnant women to get a TDaP booster with every pregnancy, because it confers some protection on the newborn.

Made a mental note to ask my midwife about it at the next appointment.

Realized it doesn't fucking matter.

Monday, May 26, 2014

Pieces

When I figured I was probably pregnant, I carefully did not tell Erik. I'd never had a chance to do a big reveal with pregnancy before, so I relished the chance to do so now.

It was just before Valentine's Day, so I bought a tin at Dollar Tree and made two pairs of booties. I drew a family tree with one branch for Erik and I, and one for each of the kids. Each tree got a heart with a name on it, and I drew an extra heart under mine. I put all of these things, and a pregnancy test, in the tin and gave it to Erik just before Valentine's Day, because I couldn't wait any longer.

Before putting a pregnancy announcement on Facebook, I made a little black and white baby cap. My announcement was a newborn picture of each baby in a hat, and the new cap, with 'Coming Soon' written on it in place of the name on the other pictures.

I've since made two more pairs of booties, two woolen diaper covers, and started but not finished several projects. There are two sweaters, one knit shirt, one knit pair of pants, one pair of tube socks, two hats...

I bought a few fitted diapers, including newborn sized. I bought several things at Goodwill. I bought probably a dozen skeins of yarn to make more baby things. Erik bought me more yarn for the same reason.

We bought a full-size van, a 12-seater, since all eight of us would not fit in the seven-person Durango.

One one of the trips to Goodwill aimed at finding baby clothes, I found the frame for a toddler bed. We bought this and a mattress and have been working on transitioning Marie from our bed to the toddler bed so that we would have room for the new baby in our own bed.

Suddenly, none of this matters. I cannot bring myself to finish even the February Baby Sweater that was a goal project before I ever got pregnant. The diapers are uselessly small. The van now seems ridiculously large and impractical. There's no real reason to make Marie sleep on her own. All of it, all of it now strikes me as useless. Pointless. Relics of some other time, some other dream.

And that I have to give these things up makes me immeasurably sad.

Sunday, May 25, 2014

Genesis & Why

Genesis

In less than a week, I've gone from wishing October would hurry up and get here to dreading its arrival.  Let me tell you why.

I am chronically lazy about making prenatal appointments.  Being a Navy wife for seven years taught me this--they had no interest in seeing you in the first trimester, as there's little to be done for you then.  So I had my first prenatal appointment for this pregnancy (pregnancy #7, child #6; I had a miscarriage in 2007) at the tail end of April.  I went to the same midwifery practice I had used for my fifth child's pregnancy, and was happy to see Amy, with whom I'd had my very first visit.  She was just as enthusiastic this time as last.  Because my cycles are long and strange, I told her that dating my pregnancy by the last menstrual period, as is standard, wouldn't work, but I had been charting and knew I'd ovulated on day 25 of the cycle I got pregnant.

Before she came into the room, I noticed the little portable ultrasound machine and hoped for a look at the babe.  Score!  Amy took a quick scan and played the heartbeat through the machine.  Baby was lounging there cute as can be, hand up by its head.  It hiccuped as I, Amy, and Linda (my second child, who had accompanied me) watched.  She printed out a couple of kinda blurry photos, as the machine wasn't the best:


On my way out, Amy had me set up my next appointment, which would be for the anatomy scan.  Even though we never find out gender, I was still really looking forward to this.  The practice offers a DVD of the ultrasound for only $5, and I was going to be danged sure to get it this time (I didn't know in advance last time, so I didn't have any money).  Since I'd verified we could take family members, I decided to take the oldest three kids, but a brain fart made me forget Linda would be at the Gifted and Talented program she attends at another school, and as it was the last of the school year she wouldn't miss it.  So it was me, Erik, Bobbie (oldest), and Esther (number three).

We got there early and I did a check-in on Facebook.  I was so, so excited and happy about this.  I've been a bit paranoid in every pregnancy since my miscarriage, and I wasn't feeling much movement and I was barely showing in spite of being just past 18 weeks by the time of this appointment.  But surely everything was fine.  I'd felt some movement, after all, and had heard the heartbeat and was well out of the danger zone for miscarriage.

Instead of the big room I'd had the last time, we went into a smaller one--the same room I'd had the ultrasound part of the non-stress test/biophysical profile with my son when I went overdue.  There were only two seats and a TV-size monitor.  The ultrasound started normally.  The tech got a picture of baby's profile and printed it and then went to check other things.  I  noticed she was pushing hard on my stomach, but thought maybe it was just because I'd gained quite a bit in between pregnancies.  And she quit talking.  And then she excused herself and brought in another tech to repeat the scan.

And then it went to hell.  They started talking about ruptures and the spine missing and there being only one leg.  They weren't talking to me, mind you, just to each other.  It was as though none of us were in the room.  When the other tech finally left, the tech who'd started the scan explained there were "multiple anomalies".  She had not, she said, done the DVD.  And then she asked whether we wanted the one picture she had printed.  I was crying, and said yes, of course.  That's my baby.  That might be the last picture I get of my baby. Of course I want it.



So we went back up to the midwife's office and waited to have the appointment.  I sent the girls out to the waiting room.  When the midwife came in, I saw it was Lauren, the woman who'd delivered my son.  I'd really hoped to see her again under better circumstances.  She outlined the ultrasound's findings: no diaphragm found, apex of the heart protruding from the chest, intestines protruding from the abdomen, no liver or kidneys sighted, one leg missing, no visualized umbilical cord, and an amniotic band "although they didn't say where it was".  Growth was also three weeks behind.

I asked what the best case scenario was, because this didn't sound compatible with life, and Lauren agreed that it wasn't, and at best I was looking at multiple surgeries and a very, very disabled child.  But probably a stillbirth.  They were referring me to a specialist, hopefully no later than the next day, and scheduled an appointment for me there the next week so we could discuss the findings and how to proceed.

We spent the bus trip home comforting the kids and when we were all home I explained everything to my mother, who was there to babysit the youngest two, and to Linda.  By then the specialist's office had called to set up an appointment for me the next day at three.  We'd repeat the ultrasound with a better machine, maybe do an amniocentesis, and hopefully get some answers.

I updated Facebook with the brief into that there had been very bad news at my ultrasound, though I gave no details other than the "incompatible with life" part.  And I spent the rest of the day trying to keep my sanity.

The next day, we went to the office of the maternal-fetal medicine specialist I'd been referred to.  I signed a consent form for an amnio, which would be shredded if the test turned out to be unnecessary, and Erik and I were shown into an exam room a lot more like the one I'd expected the previous afternoon--there was a comfortable armchair for him to sit in, and a big screen on the wall to watch the ultrasound.  A woman came in and explained she would perform an ultrasound and then the doctor would come in and repeat as needed and we'd go from there.  She wouldn't tell me anything, though.  She did, however, do the usual ultrasound talk--this is the head, this is the heart, these are the fore-arms.  As she performed measurements, I kept an eye on the gestational age guesses, and they were mostly right on target, at most a week off.

The doctor came in toward the end and asked medical history questions.  He complimented me on having had three VBA2Cs, since they're so rare.  He took a long look and reiterated pretty much everything I'd been told the day before.  There was what he termed "a severe umbilcocele" (the whole intestines on the outside thing), and though he couldn't tell it looked possible that part of the heart was protruding as well.  The chest was severely underdeveloped.  There was severe scoliosis, what he described as "an almost 90˚ turn" in the spine.  There were multiple amniotic bands present, indicating a rupture between the amnion and chorion, but they weren't attached to anything.  He asked the tech whether she had been able to get the baby to move.  She had not.  He bounced the wand on my stomach, trying to get the baby to move.  No go.

Finally, I was given a diagnosis: limb-body stalk complex (the title of this blog uses the alternate, and apparently more common, term limb-body wall complex).  For some unknown reason, my baby's organs were outside the body and fused directly to the placenta.  There was only a nominal (2cm) umbilical cord.  It was 100% fatal.  The only good news is that the defect is not chromosomal, meaning in future pregnancies I will have the exact same chance--some 0.7 in 10,000--of reliving this nightmare.  He called in the practice's other doctor to confirm, and double-checked that there's no chromosomal aspect.

What next? Nothing.  There is nothing to do.  The doctor was of the opinion that I can have a normal vaginal birth.  Just don't worry about fetal heart rate monitors, because the baby will either be stillborn or die shortly after birth anyway, so no reason to be rushed into an emergency surgery.  It was actually better than I expected--I'd feared I was doomed to a third c-section--so we thanked him and went home, where we explained the diagnosis to the kids and my mom, and I made a more detailed Facebook post.

We are continuing the pregnancy.  There wasn't even a decision to be made.  The baby has a fine heart, and at the first ultrasound it was galloping along at 157BPM.  I am pro-life, not pro-life until things go wrong.  The only life this child will have is while it is inside me, so I will do my level best to honor that as we go along.

Why

So, why this blog?  I've blogged before, but I walked away from it, annoyed and frustrated with politics and nothing ever changing.  I had zero intention of ever blogging again, and yet here I am.

The why is actually very simple.  When I came home and googled "limb body stalk complex", looking for answers, I also found personal stories.  Every one made me cry.  Every one made me feel a little better.  Every one answered questions that all the clinical explanations of LBWC don't.  It is because of blogs and personal stories on other websites (I have linked as many as I could find, by the way) that I know no one seems to carry beyond 34 weeks, that the baby probably won't live more than a few minutes if at all, but maybe we'll be lucky and get an hour or two.  It is because of blogs and personal stories that I know other people have gone through the same thing I'm going through now, and have made the same choice to continue the pregnancy even through profound grief.

I'm adding my story to these stories in hopes that, in the future, some other woman or man will perform the same Google search and find my story, and that it will help them as it helped me.  My husband is co-author of this blog, on top of working on his own blog, because only one story seemed to be written by a father, and his point of view is just as important as mine.  Eventually I hope to gather these blog posts in chronological order and offer them as a (permanently free) e-book, so those going through this can download it and read and see that they're not alone.