Thursday, July 29, 2010

The language of Baby Loss

Dear Stevie,
Sometimes I feel like I've recently mastered a whole new language. No, not Chinese. No, not Spanish (two years in middle school and four years in high school, and I still can't do more than tell you my name and that "I am wearing a blue shirt"). No. The language I now consider myself fluent in is the language of Baby Loss.

The Secret Land of Baby Loss really is it's own little world. When I first entered this place, it took me awhile to figure out what was going on, what all these "rainbows" and "triggers" and "new normals" were about.

So I figured someone should come up with a little glossary of commonly used terms for this place. A crash-course for new residents and foreigners alike. Rosetta Stone for the language of Baby Loss, if you will.

Here it is.

Rainbow baby: Contrary to what you might assume, a rainbow baby is not a baby whose parents do not care to find out the gender (you know, like they don't care if it's pink or blue...or purple or yellow...). A rainbow baby is not the child of gay or lesbian parents. It's not just a particularily bright and cheery child either. A rainbow baby is a baby born after a loss. A "rainbow" after the horrible storm that is having your child die. A rainbow baby will never "replace" your lost child (a fact that certain friends and family will remind you of on many, many occasions), but it will help patch up the hole in your heart that they left behind.

Noun: "I am really hoping I get my rainbow baby soon!"

Eventually, you're desire for one of these "rainbow babies" will almost certainly turn into an obsession. When (not if) it does, you'll need to become familiar with the following terms:

  • TTC: Trying to conceive. You may think how do you really "try" for a baby? I mean besides the obvious. There are more ways than you could ever imagine. Handstands, butt-propping pillows, lube that comes with plastic "applicators" that can only be described as little plastic turkey basters. While "TTC," you may find yourself eating the cores of pineapples, trading your evening wine for a nice big glass of raspberry leaf tea, and talking about your "cervical mucus" as if it were a normal, everyday topic of conversation.
  • 2ww: The two week wait. The approximately 14-day time period between Oing (ovulating) and getting AF (the evil Ant Flow, your period) or a BFP (big fat positive). It's called the 2ww, but it always ends up being more like an 8-day wait, because you'll no doubt start taking pregnancy tests everyday, using FMU (first morning urine), of course, starting at about 8DPO (days past ovulation).
Triggers. No, this has nothing to do with guns. In the Secret Land of Baby Loss, triggers are the little, everyday moments that "trigger" you to think about your lost baby and get really, really sad. These can be big, obvious things like holding a newborn, or finding yet another Babies R Us coupon in your mailbox, or smaller, less conspicuous things like eating a food you remember eating while pregnant, or hearing someone talk about their child's upcoming first day of kindergarten. Triggers are unavoidable and can (and will) strike at any time. You can do your best to stay clear of places and situations where you know they'll be present (baby showers and first birthday parties are a good place to start), but they will still find you, often when you least expect it.

Noun: "My triggers include little girls with curly hair and babies with blue eyes."

The New Normal. After the initial 4-6 weeks after losing your baby, you'll most likely to go back to some sort of daily routine. You'll greatly resemble a normal human being, but you'll never be the same again. Your life as you know it will be forever changed. In this new life of yours, it will be "normal" to wake up crying most mornings. It will be "normal" to keep your eyes peeled to the ground when you walk through Target so that you don't accidentally catch a glimpse of a pregnant lady. It was be "normal" to feel a slight ache in your heart from the minute you wake up, to the moment you go to sleep at night. All of these things will become "normal," everyday occurrences, nothing more unusual than brushing your teeth or taking the dogs on a walk. Take a shower. Cry yourself to sleep. It's all just a part of your "new normal."

Noun: "Resisting the urge to bring up my dead daughter in every conversation I have is just a part of my new normal."

Angelversary: The day your child went to heaven and "became an angel." Even if you're not into the whole angel thing, calling that day their "Angelversary" sounds much better than calling it what it is: their "death day." The frequency at which you "celebrate" Angelversaries will vary as time goes on. Right after your baby dies, you will probably think of each day as its own Angelversary ("today is my baby's six-day Angelversary.") Eventually, it might change to remembering your baby's weekly Angelversary. Then, maybe monthly. One thing is certain: you will never, ever forget it.

Noun: "I can't believe Stevie's three-month Angelversary is coming up already."

What other terms should be added, dear readers?

Baby girl, I'm missing you bad tonight. Why couldn't I be mastering the language of "mommyhood" right now? I want to be an expert in Breastfeeding and Baby wearing and Elimination Communication. I want you here with me.

I love you.



Franchesca said...

Genuis Kristin. Pure genious. i wish I had come across this post like a year ago. I would have felt more 'normal' and avoided spending so much time trying to figure this new language out. Thanks for putting this out there.

Tiki said...

And I thought learning a new language would be fun. I guess I'll think again.

Danae said...

Some people learn about BBT's (basal body temperature) and how to use FF (Fertility Friend). We become almost crazy about our CD (cycle day), because knowing is important for using the OPK's (ovulation predictor kit), doing the BD (baby dance), or for figuring out the DPOs.

For those who weren't high risk, after a loss, they may become high risk and get to visit a perinatologist. I had no clue what a peri was prior to loss. I had heard the term, but didn't know exactly what it was.

Some of these are common even for those who are not part of the "club", but there are some out there who didn't know it until they joined.

Great topic K!

Julie said...

this should be a primer for anyone new to our awful (and yet wonderful!) sisterhood.

Maggie said...

Here are some terms I never thought I would know the definite definition of... "stillbirth", "IUFD" (I believe it's intrauterine fetal demise...ouch), "FHR"-fetal heart rate (doesn't always apply to babyloss unless "NO" is before it. I also know what autopsy reports look like. Ugh!!! I wish we didn't know these terms. :( (((HUGS)))

Angela said...

Another great post Kristin. I needed this a couple days ago when I could not remember what AF meant. I don't know where the term went, but it disappeared from my brain and I thought I was going to go crazy trying to recall it.

The other day I was talking to my mother-in-law and she said, "I know someone who miscarried at 28 weeks." I instantly responded with, "Actually that is a stillbirth. Up to 20 weeks gestation is a miscarriage, 20-42 weeks is a stillbirth and from birth until 28 days is considered neonatal death." My poor mother-in-law didn't know what to say.

Melissa said...

Things I wish I never knew... hugs, this brought tears to my eyes, it is just so sad.

Tina said...

I had to google many acronyms in the are a couple more:

BFP=Big Fat Positive (referring to a pg test, something most of us can't wait to get)

BFN=Big Fat Negative (referring to that same test and something most of us don't want to see)

Christa said...

A language no one should have to learn.

I must say though that this was helpful, I saw BFP on a forum today and in spite of some creative Googling, could not figure out what that actually meant. :)


Dana said...

This is a great post.

When I first joined the baby loss community it took me a few days to see and figure out what all the new terms were. Words I never wanted to be part of my vocabulary are such a large part of it. Angela mentioned the difference between miscarriage, stillbirth and neonatal death based on when in the pregnancy or after birth the baby died. I have explained this to so many people and sometimes get the look of "why would you even want to know this" kind of thing.

When I was on the October 2010 Birth Club board, I would see in people's signatures that they were expecting their rainbow baby and I never knew what that was. If I had known then, I probably would have read their posts in a whole different way and thought about what they had been through (or not, I never wanted to think about losing a baby, especially when I pregnant...I wanted to stay clear from any mention of that possibility).

By the way - my desire for a rainbow baby is an obsession right now. I was upset this morning because my temperature went from 36.8 yesterday to 36.7 today. It should be going up if I'm pregnant. I know I could still be, but that small little change was pretty upsetting, even I knew it was ridiculous that it bothered me so much.

I hadn't heard 2ww yet, but I like it. That is where I am right now and I am getting very antsy. I'm already eating like I'm pregnant...all the safe foods, just in case.

And those triggers. I hate them.

I love the examples you gave of everything. It is all so true. This is a post I have to keep and re-read and share with others! They'll understand me better, they'll understand all of us better.

Antoinette said...

If you go to Courtney's new blog she has a whole list on the side....but I think you should add Flashbacks. I have found that a "trigger" can also bring on a "flashback" of the day or hospital or even a memory while pregnant and that can make the trigger a lot more intense. I had written a post called "Born Again"....had a lot to do with this, i think you would like it.

Hannah Rose said...

This is great! Wish I had this right after my loss. You should add this to Faces of Loss, Faces of Hope. love you!!

Rhiannon said...

This is a great post! I needed this when we first lost Harper, I spent a lot of time googling. Thank you, this post made me smile...kind of weird, I guess. :)

MamaE said...

It took me awhile to learn the language too. "Baby dust" is kind of an interesting term - sending "baby dust" is like wishing someone luck when they are TTC.

EBB said...

BLM- Baby loss Momma

RPL- repeat(ed) pregnancy Loss

Big Love, Big Acceptance - or so I say said...

In a cynical sort of way - this made me chuckle. Especially the ttc words. I never knew this language existed before. It sucks that any of us know - but thank god there are others out there that speak our language!

Lori said...

This is a hard one--sort of like insult to injury---but IF (infertility) as in, "It's one thing to have felt like you conquered IF and finally got pregnant, but then when your IVF (in vitro fertilization) miracle baby dies and you still suffer IF (or NOW suffer IF), it's rubbing salt in the wound."

Samantha said...

"Incompatible with Life." Worst words ever.

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