Sunday, April 27, 2008

Going Through It, Again

Because April has just been shot to hell already, we thought we might as well have breakfast with FIL/wife and attempt thaw, and call the Children's Doc who now thinks it was infection. Why not! Cram it all in one month and relax in May. Not like any heart-breaking holidays are coming up there! Hmm? What's that you say? Awwwww fuck . .

*****************

Because I now have the foresight of a swami, and I hate to say "I told you so," I'll only gloat mildly that I totally guessed there would be passive aggressive Valentine's presents. (Fist pumping while gyrating and sticking out my tongue. Hey, I'm so rarely right about these things!) I guess to make up for the completely ignored Christmas and the completely ignored one-year anniversary of our daughter's short life, the in-laws sent, um, I totally forget. Something Valentiney for Bella. And being the nice guy that he is, Mr. ABF picked up the phone YET AGAIN and dialed, and lo, someone picked up. He immediately put Bella on the phone (because one passive aggressive measure deserves another), and then spoke with the wife, and then, gasp, even a few bumpy words with his father. There have been a few more rocky phone calls, but the fact that the calls are being made and answered is really breakthrough. And Bella started proclaiming out of the blue that it had been a very long time, "since I was a baby," that we had seen them. And so plans were made to have breakfast with them on Saturday. Our first get-together since November.

It sucked. There was zero mention of why it had been five months since we last spoke, save for the frequent whistled pronouncements of how big Bella was and how she now talks like she's reading a novel. There was this really insulting, condescending and accusatory statement about how the wife "is really afraid of our dog."

(Before we get into the 8x10 color glossies with the circles and arrows, I pause to show alleged dog that strikes terror in the hearts of in-laws:


)

He now claims, in this rather threatening voice like he's about to call a lawyer, that our dog "jumped on her" when they were visiting at Halloween (completely likely; the dogs were going apeshit with the bell ringing every 20 seconds), and "bruised her, and she's really fragile right now" (she's in remission for lung cancer -- I'll return to this in the wrap-up) and "is reaaallllly afraid of him." READ: WE HAVE CREATED A LEGITIMATE EXCUSE NEVER TO VISIT YOU IN YOUR HOME AGAIN. I hate that this was NEVER brought up at the time of the visit (the entire night was so fun! Your neighbors are great! And bruised wife dragged herself, apparently screaming in pain, around the neighborhood for at least an hour with Bella to go trick or treating), and not discussed in some adult fashion ("By the way, your dog is still a bit jumpy -- you think when we come again you can put him away or tie him up until everyone's settled?"). It was delivered like an ace in the hole:

We may have stood you up at your daughter's memorial service, and ignored you and your family for five months -- including Christmas -- but we have our reasons for staying away from the likes of you.

Of course we were so aghast at this whole play (given that we've owned our other dog for 9 years now, and have pictures of him jumping into her lap while she giggles like a school girl) that words failed us entirely and we simply apologized. To be greeted with a grimaced, condescending nod.

But that wasn't the end of the it: last week FIL/wife had to put down their cat of about 20 years. It was sad for them, I understand, believe me. I'm the first to sympathize in these situations. But I swear. to. god. he spent more time lamenting his cat, ruing the final hours, genuflecting to the vet staff than he did his own granddaughter or any of our situation, ever. The real kicker was when he said when they got back from their trip in a few weeks, they'd have to decide whether or not to get another pet. "And I just don't know if we can go through that again."




Awkward!




"Yo, tell me about it," I should have said, but seriously, what gives here? Am I missing something? They're completely treating our grief like it's PMS. They're practically jamming these coded messages down our throats. Now, wife was diagnosed with lung cancer two years ago, and is in remission, but the recurrence rates are fairly grim. And while I understand (totally) shielding yourself, protecting yourself, I don't buy it as an excuse for hostility. Especially against your son and his family who just lost a daughter a year ago. If we're that hard to deal with given our respective situations, I say we each take a powder.

*******************

Segue to never doing THAT again: Doc from Children's, who's a metabolic specialist by the way, now believes the signs point to infection. He believes there was some placental abruption (due to infection) circa 25w that then corrected itself to some extent (back to this rather freaky caveat in a moment) that led to the damage. His evidence (in addition to a pile of metabolic and genetic testing that turned up negative): echogenic bowel around 28-30w. Certain organs/systems and physical features being completely unaffected. The smallest growth recorded (I believe in a gland function) was circa 25w, other growth measured around 34w.

Sounds convincing, but here's where the rarity kicks in: usually when there's placental abruption, you go into labor. I did not. Somehow things kept chugging along keeping her alive (according to his theory), but with some now stunted growth that would become severe. Apparently this never ever happens, ergo there's no evidence medically speaking to compare this to. (Apparently the pathology report even accounts for some "healing" in certain areas -- I forget this totally, and really need to sit down and reread the damn thing when I get a free five seconds.) They've never seen anything like it.

The other questionable aspect of this theory is the glaucoma. Apparently there are diseases that cause glaucoma, but she tested negative for those. Glaucoma usually doesn't arise from the lack of oxygen. And while he can point to some of the metabolic mess and claim that the struggle to correct herself led to some energy problems, he's hard pressed to explain the presence of an odd protein circling around in her system.

And finally, there's no evidence of infection, and usually one is able to track down something. Could be it had cleared out by that point, he says.

This never ever happens.

Oh, and what about my placenta, you ask? They threw it out -- because we all thought she was fine, remember? Yeah. The irony is blinding. Perhaps the big clue here was present and available and thrown in the trash because she looked lovely and her Apgars were decent and she was just taken for observation. When the wheels really started coming off the bus 24-36 hours later, I remember some heated words between the NICU doc and the delivery floor wondering if there was any way in hell they could FIND it.

I understand from a few of you who were given this cause of death that your OB's noted that the placenta "looked off" -- so I'm gathering there's some obvious visible problems evident to the naked eye, and my OB said nothing, recorded nothing.

So. Not sure what to think here. Genetics (with whom Metabolism respectfully disagrees) also makes really valid arguments that include problems like glaucoma and odd proteins, and certain organ systems being blown to hell while others are not, but again, this has never happened. Lots of negative tests. We've never seen anything like this.

I'm not sure whether to hang my hat on placental abruption "which never happens like this" or genetics "which has never happened like this." Either way, lightning struck, I lost, Maddy paid the price. My odds are apparently "not likely to happen again" up to "a 1:4 chance of delivering a terminal baby." Either way, no way of knowing during the process. Aaaauuuuggggh.

I of course went off to check out placental abruption on doctor google, and noted that if I kick my coke habit the next time around my chances for a live baby go up considerably. Good to know. Also good to know that I don't meet any criteria on the risk list save for being over 35. Nothing I can do, no way I can tell.

Don't know if I can do this again.

32 comments:

STE said...

I freaking hate people.

More later, after I read this again.

CLC said...

Your in-laws should be put down. Oops, did I say that out loud? I mean they have some serious issues, however, it's probably too late to teach old dogs new tricks, so I hope you never do the meal thing with them again. I don't know what you do for Bella's sake, but I think my head would explode if I were you and I had to be in the same room as them again.

As for this infection theory, I am at a loss for words. It just sucks that you don't have a clear definitive answer as to why, and they don't seem to giving much comfort on the odds things. I am so sorry. It's so inadequate, but really, I am very sorry you don't have a better answer.

Antigone said...

I'm in similar sorts with my own parents. BTW, your puppy is a cutie.

Trying Again. I f'ing had to, even though we have *no* idea what our odds are since we don't know why my body keeps killing babies at various stages of development.

Busted said...

You are a saint for even dealing with the ILs at all. As someone else in the abruption camp, agreed on the feeling that it seems impossible to be able to do this again.

CDE said...

Oddly, it's harder for me to talk about the death of the cat S had when we met than it is about the death of our sons. I think that thinking about the cat makes me more sad, and thinking about our sons make me more angry. And yeah, it sounds like giving your in-laws a wide, wide berth is a good idea.

Though, to be fair, that dog looks terrifying. I bet he could lick you to death.

Julia said...

I feel like "crap" kinda covers a multitude of sins here. I could, of course, instead rant like I really want to and point out that selfish twits need ass kicking and not apologies, but I am going to say exactly nothing original, so I might as well stick with "crap."
I am sorry.

sweetsalty kate said...

I'm frustrated with the lack of answers for you, but felt some sort of change in the air through your last few paragraphs. It is just me?

That last line - you write that you don't know if you can do it again, but it read to me as though it had an invisible question mark at the end.

Maybe coming to terms with lightning as the only answer you're going to get is some kind of letting go, giving you a chance to consider from a safer distance to conceive or not to conceive.

xo

sweetsalty kate said...

Man: "It is just me?" That typo made me sound like yoda.

Meant to say "Is it..." of course.

Tash said...

Like Yoda, I do.

Newt said...

That dog is terrifying. I may have nightmares.

April has been such a nightmare; I really do hope that May brings some relief from these miserable encounters.

Sorry I am.

Catherine said...

I had an infection with nothing visible in the placenta. Actually, two different infections with nothing visible in the placenta. With the first, we had freakishly large growth by 35w. The infection was diagnosed by the autopsy of the baby. With the second, we had normal growth at 20w, but severe anemia. The infection was diagnosed by blood tests on me several weeks after delivery. Infections do weird things. I personally wouldn't rule it out in any case.

Your in-laws...I wish I could say I was speechless. My MIL didn't come for either memorial service. Actually, she hasn't been here since before our first son was born...he's almost six (and she's only seen him a handful of times in his entire six years of life). People are weird...mean AND weird.

c. said...

Can't say much more about the ILs that hasn't already been said. It's much easier to cut loose a friend who has shit the bed on being supportive. Not so easily done with family...and believe me, there are a few I'd cut loose in a heartbeat.

With respect to Maddy: Fuck, I wish you had an answer, Tash. It sucks ass not knowing how/why she died. Not that knowing would change anything or make things better, but I can't help but feel it might help in moving forward, that having a reason why would help you make a more confident decision re: trying again or not. I'm sorry, Tash. How many times do you have to hear that? (Just wish it was also being said by those self-absorbed relatives with whom you just had dinner.)

luna said...

your ILs sound awful (but not functioning?). though I have to say I understand the sorrow of losing a deeply loved family animal (esp. one that has served as a surrogate for children). no, it's nowhere near the same as losing a real baby (shouldn't even be spoken in the same breath). that they fail to begin to appreciate your grief is just beyond words. and oh my, your pup looks like a darling beast.

and I have no good words for your doctors' findings. I don't know what's worse, knowing it's something that has X chance of happening again, or knowing it's such a freak occurrence and there's no way to know or prevent it from happening again. it all effing sucks. I'm so sorry and wish there were better answers for you. ~luna

k@lakly said...

The IL's, can I write fuckers here and not piss anyone off? Anyone who has a for real heart and a real live functioning brain would know that you CAN NOT compare the loss of a pet with the loss of a child, anyone who does needs a big ole brick dropped on their wee skull, perhaps more than once.
Wish I could offer more guidance or even wisdom but seeing as how we cut the IL's(husbands fam) out of our lives 6 years ago I am probably not the one to go to if reconciliation os your end game. However, I have a brilliant nasty gram, just for asshole FIL if you need it, I wrote it myself:) and am happy to share!

I have always sided with doctor infection when you have written about the competing theories. I know you have a love/hate relationship with my zebra analogy but I really believe the when you hear hoofbeats go with the horses guess before you go lookin for zebras. My little brain just thinks if it were genetics they would have found something in one of you somewhere...but then again I slept through anatomy class so what do I know?
Sorry they couldn't give a for sure about any of it, what a place to be in...sigh

Beruriah said...

Assholes. CLC made me laugh-oops. My sis's inlaws have never seen any of my nieces or nephew; because my nephews being in a wheelchair makes them uncomfortable. They can all go to hell.

I am so sorry the answers just keep getting more confusing. I hate this.

ms. G said...

Oh my. And I have the nerve to sometimes complain about my in-laws. The whole wife having lung cancer thing really confuses me too. So, in the event that it kills her, in FIL going to be okay with you not attending her memorial service or ignoring him afterwards for months? I just don't understand peoples inability to put themselves in our place when they also have something tragic going on in their lives.

I know my situation is different than yours in that I had a stillbirth, but I never found out a reason why M died. Nothing. And it was really, really hard to hear nothing but "theories". I do have some health issues and I was so afraid that they were related to his death. Trying again is such a scary thing, no matter if you know a reason or not.

Amy said...

Sounds to me like the IL's are the vicious ones who might just bruise you. Oh, wait, they already did that! I wish some people had brains!

Your pooch is cute! I'm sure she just rolls over and wants a tummy rub.

As for the testing results...ARRRGH! That's all I've got there...maybe it is lightening, who the hell knows!

G said...

I agree with Kal - My feelings side towards infection with each post you put up. I don't know whether that's wishful (wishful? that word doesn't seem right) thinking or what. Placentas do weird things, infections can trigger odd "never seen before" things.

And your ILs can BMA.

Aunt Becky said...

That dog looks vicious. I'm actually quivering in fear after looking at that picture.

Dude, your in-laws suck ass.

janis said...

Shhesessshhh. I don't even know what to say. But, why let it thaw? Maybe better to keep it frozen. i am sorry you have to deal with this. ((hugs)) And not having answers. Although I think there will never ever be a reason good enough for my baby to die, you know? NO reason is ever good enough. No answer will make it all better.

Carole said...

The in-laws completely suck. Maybe we can pull a Throw Mama From the Train kind of deal...I take care of yours...you take care of mine. ;)

I hate when they can't give you a definitive answer. They were unable to in our case as well...alot of 'we thinks' and 'probablys'...but no guarantees...nothing that showed up on all the tests they ran.

Thinking of you.
~Carole

Waiting Amy said...

As a veterinarian, I can tell you -- if I saw that dog in my waiting room I would immediately label the chart with a CAUTION sticker, insist on a muzzle and use sedation for any type of examination!

Actually, I think the ILs need the CAUTION sticker.

As for the results, I can't help but also side with the infection theory. I am no genetics expert, but it just seems that for things to have gone so terribly wrong, there would have been something more concrete to identify. If it were a multi-gene confluence of recessive traits, I can't think that the odds would really be 1:4. And otherwise I would think it would be a more dominant and hopefully identifiable gene. But again, no expert here. Just my gut talking. Only you and DH can know what you can handle in the future. I just want so badly for you to have another chance.

Melissia said...

I know it is a long shot, but try and contact the l&d nurse who attended your delivery and filled out your paperwork. If she is like me, she will have put hands on your placenta, looked it over for anything unusual and made a small note in the chart. Look in the nurse's notes and on the birth record, where there is usually a space for weight of the placenta, description, etc. It won't tell you much but may lead you in a new direction. She may also remember something that didn't do in the chart, but did strike her as odd in hind site. Good luck.

Anonymous said...

New to your blog here, and have to tell you, I really dig your stories, the way you write. First, I am truly sorry for your loss; I am just so, so sorry that you, anyone, ever has to deal with such a thing. Second, your family - (the extended one) - reminds me so much of my own I can't even stand it. Holy crap, I didn't know other people had the unfortune of experiencing some things so similar to what I have. Different situations, but nonetheless, stinging. Big, super big hugs to you. (Your dog, BTW, rocks). Jo

Aurelia said...

Okay, contrarian here, I think the infection theory is bunk, an excuse because they can't find the placenta.

Odd that since it is illegal to throw out a placenta without pathology taking slides and doing a quick exam in say, all 50 states. Even in healthy babies, it is MANDATORY. So if you ever wanted to sue....

As for the partial abruption and healing, that happened with me during both my late miscarriages and also with Mac. It's because of the gene I carry, with has to do with modeling and remodeling of fibrin which is the type of tissue that placentas are created from.

That placenta formation problem can then cause defects in fetal development due to problems with poor blood flow. So the organ damage to some organs and not others, makes sense.

If you get pregnant again, I'd make a strong case for heparin and baby aspirin just to cover their asses, and maybe progesterone to lower the inflammation levels.

Genetics might be the answer, but with so many new single gene disorders coming to light all the time, no one can be sure of that for now so there's nothing you can do on that front anyway.

And yes, you could've had Bella just fine same as I had my other kids even with a clotting issue.

Which Box said...

Wow. Wow. I mean, I know my in-laws are idiots, but within the range of crazy it's fairly well-defined. A half century of being a self-centered bitch, ok, fine.

your in-laws, on the other hand, seem almost....malevolent? Intentional somehow in their cruelty to you, your husband, and both your daughters. I'm so sorry.

And on the other. What a leap of faith you are considering. Just....stepping off the cliff into either the abyss or not. Maybe. Scary. I am sorry.

niobe said...

Your ILs are, of course, bringing jerkhood to a whole (heh, heh...I said a-hole) new level. Too bad it's not an olympic event. Sadly, though, this kind of hostility towards bereaved parents seems all too common.

I've been thinking about this a lot -- trying to understand why my own mother seems so angry at me since the twins died -- and what I've thought of is this: many parents whose children have died, in addition to being sad, experience an overpowering rage -- at the unfairness of the world, at all the parents who get to have healthy babies, at the doctors, at themselves. Maybe relatives feel something akin to that deep anger and take it out on the parents.

It's still horribly unfair and painful, but maybe there's some kind of psychological reason for it.

Anonymous said...

I also had placental abruption at 29 weeks which resolved itself so you would not be the only freak with a mysterious resolving placenta. Also, docs/nurses are supposed to inspect the placenta before tossing it. . . I guess I am saying I fully agree with Melissa and Aurelia.

Brittany

Mrs. Spit said...

I'm sorry. (But I'm so with CLC about the in-laws) And the dog, looks like a brutal man eating kind of dog.

I'm sorry about the autopsy results. I find it so painful when there aren't any good and clear answers about something like babies dying. I keep thinking there should be better answers than "I think" and "maybe".

Thinking of you.

Searching said...

I agree with CLC about the in-laws. Cute pup, btw.

Sigh, I'm so sorry there were no definitive answers in blank ink for you to read. Really, devastatingly sorry. I, too, would look at the nurses' notes and any other bit of her chart you can get. Just in case there was something there but not labeled in the right section.

Give yourself a nice treat after the crappy weekend.

Lisa b said...

I don't even know where to start here Tash.
Your inlaws defy my launguage skills, doesnt' the hospital have to keep your placenta slides? and I hate it when genetics and metabolics go at it. That never ends well. Particularly for the mothers who have to wonder if they can do it again.
I hope that you can and it all turns out well, which I know is so lame and trite, but it is all I have to offer.

Natalie said...

Not having answers sucks monkey balls. And after reading the comments on how it's manditory for them to inspect and keep slides of the placenta, I'd be furious. I don't know what I'd think about their infection theory. It all sounds rather unlikely... but, as I've found, unlikely doesn't mean much.

And your in-laws... ugh. They sound like lovely people.

(But your dog, he is wicked cute!)