Great Expectations

At some point a few weeks ago, Bella sat at the kitchen counter, grabbed a sheet of my grocery list paper, and intently started writing a missive.

Mom, how do you spell 'Christmas'?

When she was done, she read it out loud:

Dear Santa, I want a Poni [sic]. Merry Christmas. I love you. [Bella]

She then announced that she was putting it in the Day 24 slot of her advent calendar so as not to forget, and I reminded her, gently, that Santa does not bring live animals. That animals are a family decision, not a Santa decision, and can you imagine his sled and bag with live puppies and kittens and ponies? The crazy! I also reminded her that she has a pony, for all intents and purposes (it's my aunt's), 45 minutes due west of here that she can ride anytime.

Bella stared at me blankly and went and dutifully (defiantly?) put her note in her calendar.

It's that time of year, where I suppose children and normal people wish and hope and make lists and expect. And as a person with a major holiday party the week before Christmas, preceded by two days of standing on my feet awkwardly hunched over a munchkin table in a Kindergarten class making gingerbread, and still lacking the complete incentive to spread Joy! and Peace!, I remind myself that she won't miss what she doesn't know about. If I don't say anything, and don't make promises, and remind her that Santa uses the list as a guide, not a constitutional legal checklist, she'll be happy with what I can do.

And she was.

And I also reminded myself of the same. I don't make "wish lists" anymore, the whole conceit seems so, well, ripe for disappointment. Not to mention that I can't wish for what I really want. And everything else seems so very trivial in comparison. ("Um, some jelly roll pans would be nice. You know, if you can't raise the dead and perform a miracle of Biblical proportions.") I did what I could, and this year I relinquished a lot of what used to make me happy either to the "Don't Worry About It" pile, or to Bella's To-Do list. And I found that alone made me very happy, very peaceful, very content. Gone were my Martha Stewart pretensions of having perfectly glazed confections, and I scheduled a playdate and had Bella and her companion frost and decorate a full batch of Italian Wedding cookies. They looked wonderful, and lo, still tasted great. Bella did most of the tree decorating, I decided again to forgo sending cards. A wise choice.

:::

We've told Bella about the other pending engagement on the calendar, and in full disclosure told her this was not a promise. We would likely have to wait for the baby to be born in order to know if he was healthy and could be brought home from the hospital. Interestingly, I've found that her conversations have Mid May as a boundary. She's told a few people, but seems to wait for a segue instead of just blurting it out, she likes coming up with names, she talks about the hospital a bit. She has never had a conversation with us about a baby coming home, what will happen, where the baby will go, where it will live, what it will eat, how it will change her life. Lord knows, we certainly haven't either. My internal schedule still only goes two weeks in advance, and the only way I know where I am in this escapade is based on appointments scheduled around significant dates. May is a distant mirage on my horizon, and any discussion of what comes after usually has nothing to do with a baby, but with pool memberships and third floor renovations and if it comes up, the caveat, "If he lives." Or sometimes, "Even if he dies, we'll want to . . . . " And you know, we will.

Bella's baby brother name list is as follows:

EGGPLANT (what I tell her when she asks me what we should name him)
IAN (Olivia the Pig's little brother, and the only reasonable little brother she is familiar with)
BUDDY (Our Dog)
HAREE
LAREE (I believe two names she feels she can spell without help. Don't laugh, "Bob" and "Car Wash" were on my list for my little brother)

There are moments though, where even though I am still as distant from this experience as one can get with an alien life form growing inside them, that Bella does something to show that not all of us are completely tuned out. When we were decorating gingerbread at home, after making sure she had decorated a unicorn, cookies for the dogs, gingerbread people that (theoretically) resembled Mom, Dad, and Bella, she proclaimed, "And this one is Baby Brother."



(There is a clear resemblance to those blurry ultrasound pictures where everything seems blurry and unreadable and the eyes and mouth are a bit spooky. Tell me you can't see the kidneys in this.)

We can try and tamp down those expectations, but we can only do our best. No promises. I will spare you the profane and macabre joking that this pastry elicited from me and Mr. ABF, but I suppose deep down we were a bit touched. I'm glad someone here is looking after him a little, at least as much as frosting will allow.

:::

I had my twenty week scan yesterday, and all looks fine. Which is not remotely a relief as much as it is a lack of surprise. A few weeks ago, I had a "slightly elevated" marker (and by slightly, .1 above what the cut-off is, and only noticeable because it's one of those "soft" things that they jam into an equation wherein x=my age (40) and n (as in 10ⁿ) goes up a factor of a few 100 because of the 40 part, and then odds start to look a bit scarier than it would if I were a respectable 35 or something, but who's paying attention to odds?) so Dr. Hotshit paid extra attention to the spine in addition to all the Maddy pathology goodness and is hereby "not worried." Well that makes one of us. She then scheduled me for a full bank of scans through weeks 20-30 and warned me of the impending weekly fluid checks/NSTs to start around week 30, so I think the "not worried" thing was perhaps a wee bit of an oversell.

Everyone on this side of the ugly warns me that there will come a day when this will become "real" -- like the Velveteen Rabbit, I imagine, perhaps the ultrasound photos become a bit frayed around the edges and lose their luster? -- and will start "being a mindfuck" (tm, Julia), but I'm certainly not there yet, nor do I really foresee being there, frankly. Because my "real" comes a few moments after birth (whenever that may be), there really isn't a milestone along the way where I think "Phew!" or "Viability!" or "Lung maturity up!" or whatever. There is this creature on a screen which is apparently inside my body which may or may not be hosting a time bomb, whose brain though clearly visible may or may not be composed of mush, and then I ask about the next appointment and start worrying about what to have for dinner. Maybe that day will come, who knows. Maybe it will be years from now.

I still run (well, did until we got 16" of snow and entered a deep freeze during which my five-year old is home all. the. time.), still shun maternity clothing (god, I hate that stuff. I hate even typing those words) as much possible, still cover up and try and avoid conversation with people who don't know. All the neighbors know, and those in the know have said . . . . nothing. And you don't know how much I appreciate that. There have been some quiet asides to Mr. ABF about "Let me know if I can do anything, you know, cooking, whatever" and even a nice aside to him (over the keg at the Christmas party) from a newish-neighbor physician-type who works at Children's who apparently "just found out" (and I mean, about everything) to make sure we were comfortable with who we were seeing and that he would do anything he could. Anyone who enters into conversation with me gets met with a gentle yet terse "We're saving congratulations until May," and "We're not talking much about this one." And things get shut down pretty quickly and we start up with how erratic the Steelers are this year.

Perhaps because I expected nothing, I was surprised and giddy with my (stress, MY) Beatles Rockband on Christmas morning, and have been enjoying (probably way more than is healthy) Mario Kart racing. And I didn't say anything at dinner with the relatives, and no one says anything to me, and, well, we wait. I'm not optimistic, but I'm not pessimistic either. I'm just not expecting.

I came home yesterday, showed Bella the pictures ("Is the baby healthy today?" she asked, which I considered remarkably in the moment) and told her that her gingerbread man was a far more accurate anatomical likeness if I thought so myself, and got down the 2010 calendar to enter in my next appointment. She grabbed the calendar and a pen, and before I could catch what she was doing, flipped to "May," plopped her finger down in what to her appeared as the middle square, and without saying a word wrote "BABY." Like I said, at least one of us is thinking a bit in advance.

Tangled Web

I'm not big on pain olympics, really truly I'm not. But I did want to draw attention to one particular element many bring with them, in their overloaded steamer trunks and suitcases, to babyloss: Infertility. All tangled up and intertwined, two sets of grief each deserving of their own place in your mind. Let me know how it impacts you, today over at Glow in the Woods.

Within

It poured here yesterday. Just warm enough that it was rain, not sleet or ice or snow, but a frigid rain. We took a neighbor with us to the movies, and otherwise hunkered down inside.

But when we left the house around 6:15, the rain had stopped, the clouds were breaking, and the temperature had gone up a few degrees. We were all bundled in layers, Bella even sporting her new snow pants, and hoping Children's would set us up outside under the sky. Bella even swore she could see a few stars peaking through the gray cover.

It was not to be. Faced with a day of deluge, I'm sure Children's expected the worst, and prepared to put all of us -- 1,300 there to represent 345 children -- inside. They nicely set up three viewing areas to spread the crowd out, but somehow the evening loses something when you're inside peeling off layers and trying not to spill your hot chocolate on the rug and Bella is helping you with your glowstick. No live candles inside, save for the one the person running the ceremony lit on her dais, and promised to keep lit for at least the full hour.

Grief has nowhere to go inside, but up into the ceiling, where it forms a cloud and simply rains right back down.

I saw a few moms I recognized from my old support group, and watched for their children in the program. As always, there were the children that for some reason dropped on your conscious: for my husband, it was the small child who died on his birthday this past year; for me, it was a boy born mere weeks after Maddy who died this summer. That cleaved me in two for some reason -- made me mutter, Son of a Bitch under my breath. He was a blond boy with wide, deep brown eyes -- the kinda boy that a few years ago would've made my ovaries hurt just to look at. To think he escaped our vortex of death and destruction only to be felled two years later by god knows what. You're on my mind today, sweet Joseph.

Bella watched with rapt interest, and when the screen was blocked from view, she settled down on the floor with the book to follow the names and pictures in there as they were read. I was amazed at her ability to see straight through wires and IV's and bald heads and central lines, and coo, "Oh how cute, look at her Santa hat!" or "Aww, she had a dog, too mom." She took in the surroundings of Children's -- their Holiday decorations, lights of all sorts (mostly not holiday, I'm guessing), and even gamely tried to sound out the names of some of the buildings. This comforted me. I remember driving by Children's in Phoenix growing up and shuddering. I viewed it as a leper colony, a place where monsters lived, and children were sent to die. It was the place of nightmares. I don't want her to view our Children's as that place. I wish I didn't.

I recognized the boy in the program who died a day after Maddy and I believe had the bed right across from hers. I believe I found the baby born right after Holly's Ruby, who died a month or so later. I found a toddler who died the day before Maddy, and her parent's missive in the book began with "Saturday." I knew it was a Saturday. I will always know every numerical day and the day of week it corresponds to in that week for as long as I live.

Walking out I reached in my pocket for my ziplock baggie of names, and . . . it wasn't there. I panicked, thinking someone inside had probably just reached down and found an unusual souvenir on the floor when I checked another pocket and there they were. I had placed them in an interior pocket earlier in the day so I wouldn't forget them, and so they would stay dry. The pocket right next to my heart. They're all home, in a bowl, with a candle. The stack is incredibly big now, and I don't have the heart to count how many names. But they're there, keeping Maddy company. Keeping me company.

I noticed this year that the short entries in the accompanying book came from people three years out. Interesting. They increased in length after that again. I'm wondering why that is. This year we just couldn't seem to come up with anything to say that we hadn't already, that matched what we still felt three ceremonies in. I have a feeling regardless of what happens next year, Maddy's memory will come flooding back to play a central role and we'll have more words to put down on paper by next December.

:::

Maddy,

It's been almost three years now, although often it feels as though you were just here. We think of you daily, we miss you mightily, and we remember you always. You're still the most delicate yet strong human we've ever encountered.

Mom, Dad, and Bella

Names and Light

It's been on the calendar since September; I know, because our photo and written submission were due October 1. And yet, it was just last night when Bella asked what was going on this coming weekend that I realized Sunday night is the annual worldwide candlelight service for children who have died. Per usual, sponsored by Compassionate Friends, and for us, hosted locally at Children's.

For those who haven't been reading since inception (and who can blame you?), the first year we went to this it was . . . rough. It was rough thinking about going, and in the end we were stood up by family members -- the first of many schisms abysses to appear in the relationship we have with extended family.

But. I decided it would make me feel better, and less lonely, and even my load so to speak, if I carried in my coat pocket the names of all the children I know who have died. And you know? It did. And I did it again last year, when Bella and Mr. ABF were kept home with a bilateral ear infection and I went with my Aunt and Uncle. And again, as I absorbed the names and faces of the children in the program in front of me, I silently clutched my stack of names, knowing I wasn't alone in this. None of us are alone in this.

We're planning on going, barring a last-minute massive ear infection for any of us, and again I'd like to carry my names with me. Please note: these names are NOT part of the service, they are not read aloud. I write them down on a piece of paper, and all of the names come with me in my pocket where they keep me company and the palm of hand nicely warm. At our service, they read the names and show the pictures of children who have died at Children's -- some going back before the year I was born, back when fire was invented. Everyone holds candles that look amazing in the frosty winter night, and the grief seems to dissipate skyward into the black. When I return home, the names all go into a bowl next to a candle that is lit nightly until my Christmas decorations overwhelm it all. (Or the cat threatens to dump everything on the floor. Crap happens in this house.)

I love saying the names of your children as I write their names, and put them altogether. There are far too many, and yet it makes me feel so much less alone in my grief and missing.

If you'd like for me to carry your child's name with me this year, please leave a comment with the name. If you'd like me to use a real name and not a blog pseudonym or you'd like to keep this otherwise private, please feel free to email me at tashabf at gmail. As always, I carry the names of children I gathered from my first year doing this, so it's highly likely I already have yours written down, but a reminder and double-check are always welcome.

And please, feel free to light a candle at 7:00 p.m. your time on Sunday, and join in a wave of candlelight remembering Maddy, and those who made impressions despite their short lifespans, earthside or inside.

Lost, and Lost

On Thanksgiving morning, after reading Bella the comics, I picked up the local section to peruse the obits as is my wont. Imagine my surprise when there, staring back at me, was the name and a picture of my RE -- yes, the new local one we only just saw recently. Twelve days after we last saw him and he cheerily dismissed us to the OB, he had a heart attack while on vacation and died at the young age of 60.

I'd like to paint a heart-tugging tale using wide brush strokes and deep shades about how he helped create life before departing this world himself (and I'm sure he probably did), but that wasn't so much my experience with him. Ironically we ended up not needing his help in that critical regard, if you catch my drift. (At least I thought this was so ironic, I was set to mail in my picture to some cheapy dictionary with the subtitle "Irony Exemplified: geriatric fecundity" under it, when the resident biologist informed me that it wasn't remotely ironic at all and in fact made perfect sense. So maybe I'll get to that bit of narration here or later, we'll see how it goes.) Not to mention I spent a fair amount of time grumbling about his super-sized practice and their propensity to lose stuff. There was also his utterly classic deer in the headlights look about three minutes into our initial consultation. Here I've been wondering how to start this story, if at all, and this provided me with an apt segue. So here we go.

:::

The decision to try and have another child began with candlelight, a bottle of wine, Barry White in the background, and numerous phone calls to various medical institutions. First there was Children's, where I told our point person to tell everyone else that we were thinking of doing this (I know, how private and romantic and spontaneous and all! We'll name the baby after our genetic counselor's phone extension, how's that?), and the plan was that if there were still eggs in the basket, we'd try with our own genetic material. He recommended an RE's office, and I called them next and blindly agreed to go with whomever they scheduled me with. The next call was tough, to the old RE in our old state, who was never informed of what had happened. I didn't recognize the receptionist who told me to fax over a release for our records, so I did with a very short explanatory cover letter and no less than 10 minutes later my phone rang and here it was old RE himself on the line and the first grief-stricken words practically shouted into the phone were, "My God, WHAT HAPPENED??" I cried. He expedited my record release.

I strolled into the new RE's office, with the game plan already composed in my head: I'd go through my reproductive history Greatest Hits!, and stress that what I really wanted right now was information. I'm practically moving with a walker after all, so I wanted to know my FSH and whatnot, and I'd make a decision from there about whether to try or not and how, and with whose gametes. It sounded good to me.

I didn't get much beyond the part where I hand him the pathology report "in case you're interested," when I noticed his eyes were as big as dinner plates and he had picked up the phone and was punching numbers. "You need to speak to Dr. [HotShit]." Butbutbutbut, I stammered, we've talked to the greatest minds in the country, we've thought for 2+ years, I'm FUCKING 40! HELLO!?, we really don't want to talk to another doctor! What on earth could Dr. HotShit tell us we didn't already know or have thought about, and who was she anyway?

Too late, he cut right into my protestations, he handed me the phone with Dr. HS's scheduler on the other end. As a bone I suppose, he told me to come in on CD3 for the usual.

I was a wee pissed. I called my Children's guy to see what the deal was with Dr. HS, and firstly, it was noted she was actually mentioned at the end of the pathology report as someone to send it to. I picked it up, and there in fact was her name. Huh. And my Children's guy went on and on about what HS she really was, and this would be a good thing, and ugh. I decided if this is what it took for the RE to move forward with me as a patient, we could at least sit in this person's office for a few minutes.

Dr. HS's waiting room was completely unremarkable, replete with one of those brochure centers with pamphlets titled, "Chromosomes: The ABC's of X's and Y's," and while we waited for her assistant to intake us, I told Mr. ABF if she made us watch a Troy McClure filmstrip on basic genetics and amnio, I was walking. He said he'd hold the door. We went back, assistant nicely took our history, and went to get Dr. HS.

And like so many doctors I've met on this road, she walked in the room, the spotlights went on, the music swelled, and the dry ice rolled. She said all the right things about being sorry and asking how we were doing, and then quickly ran through Maddy's history. She knew it cold. Even the really recent parts. And even though this woman has multiple degrees including one in genetics, she also was of the opinion that it was probably placental abruption and/or infection, and we were totally reasonable in wanting to get pregnant again. Not that it mattered -- she could have told us the opposite and I'm not sure if I would've changed my mind, but nice to know Dr. HS thought I wasn't insane. We then went into what would happen on a subsequent pregnancy, at the end of which I may have slightly, just a tad wee bit begged her not very subtly to be my MFM. I may have been on the floor with my arms around her pants-leg. And she agreed on the spot, and her assistant piped up that all I needed to do was call her and she'd schedule everything.

No going through the front desk, no hand-wringing explaining my past to a new MFM. It was like being handed the golden ticket.

With a small caveat: Dr. HS wanted to run "some tests" before I got pregnant. Sure! Whatever. Run away. We'll just get them coordinated through the RE's office because how hard can that be, right?

So I do have RE to thank for that connection, even though I'm pretty sure he set it up because he thought we were despondent batshit crayzees who didn't know a chromosome from a allele.

My other great memory of RE was him calling me from home on his day off to tell me my CD3 results. "How old did you say you were? Because you have the levels of a 20 year old." I sat with my jaw on the floor. (And it stayed there until a few weeks later when he told me my progesterone results, which were like the levels of a cardboard box. But whatever, let's focus on the positive.) And, it turns out despite still being a good 18 lbs overweight (e.g., over what I was before getting pregnant with Bella), my glucose/insulin levels were fine, totally normal, that is to say, better than they were. To make even more clear: the whole reason for my 2+ years of infertility prior to Bella, and the raison d'etre behind seeking secondary infertility treatments before Maddy had vanished. RE said something about an IUI, but certainly didn't think I'd have a problem getting pregnant, and definitely no need for meds at the moment.

By now the candles are stubs, the wine is long gone -- the bottle kicked under the table, and Barry is hopelessly stuck on the same endless loop of "Can't Get Enough of Your Love," but we look each other in the eye and decide to do this thing. Let's just get this pesky bloodwork out of the way.

It took my nurse what seemed like ages to find all the right codes and stuff for the myriad clotting, circulation, autoimmune, and general antibody screening tests that Dr. HS wanted, and I finally went in to the lab and they took a gallon of blood in small individually marked vials and I went home to wait by the phone and fix the Barry recording.

And I waited. And waited. And I called the nurse for results, and she said they weren't back, call next week. Next week I started the daily stalking routine and she finally called me back (now over three weeks later) and said, "I called the lab. They never received them, they were all lost en route." Well fuck me, there went a cycle not to mention a gallon-sized zip lock of filled vials. That can't be good for anyone. Back I went, drained my arm, and again sat by the phone to wait.

And then August hit.

There was no way we could go in August. I didn't even call to see if the test results made it, and they certainly didn't call me, and I hardly cared. There was no way I could even think about doing anything in August, including, you know, that. At least that much. Poor Barry got put back on the shelf. But hey look, how convenient, the next cycle starts Bella's first week back in school! I'll call then.

And the first day of school rolled around and I packed up a lunch and stereotypically forgot my camera and we headed in for the Kindergarten parents' coffee reception where I guess we're supposed to stand around and cry or something, and on the way in I merrily started doing math in my head so I could call the office when I got home and . . . I was late. Well, I was on cd28 according to my really bad August math, and for someone who never makes it beyond 26, that's . . . suspicious.

Just for good measure, the lab ALSO lost my second beta draw, forcing me to drive in early on a rainy Saturday morning hoping we could all do math and figure out doubling/tripling over three days instead of two. I casually asked if the lab was like this, big and overworked and overused by multiple offices and prone to just chuck things in the trash when they didn't have time to get around to them, and they stared at me and insisted that they'd never heard of anyone losing results ever. That losing two sets of stuff within the space of two months was really unheard of. Must be me, then. How auspicious.

And hahahahahaha and progesterone supplements, here we are.

I felt a bit . . . guilty? Like a liarliarpantsonfire? going back to see RE and I suppose he felt a bit smug seeing as all he did was point me in the direction of Dr. HS but given that the lab had lost a few results and I felt like patients in this practice really needed to be proactive (when I was about as passive as one could imagine), I'm wondering what would've happened had we really needed assistance. Would they have handed us a turkey baster, pointed us to a private room and gently reminded us to shut off the ultrasound machine when we were finished? RE personally did the first ultrasound to make sure the sac wasn't in my ear canal (not entirely a laughing matter when a resident on the second visit found the heartbeat but couldn't locate the yolk sac, which I really didn't think was biologically possible, but I didn't want to mess with the poor kid's head), and then on subsequent visits stood and chatted with us while residents had all the fun practicing "Find the embryo!" Last we saw him, he smiled, shook our hands, wished us luck, and asked to be kept apprised of what happened.

I'm sure in another life, I'd pull out all of the steaming hot omens in this story -- the wreckage left behind with missing test results and a dead RE aren't exactly good signs, are they. But that was the old me, and the new me understands all the pregnancy omens in the world are contained in a small box of ashes in a bowl on a shelf in my family room, and what happened here was just life.


:::

Although not exactly personally responsible for what lies inside, my RE was a remarkable person. According to his obit, the first in vitro baby in Philadelphia was born in 1983, and RE headed up the IVF center -- the only one in the region. He was considered an IVF pioneer by his peers (and I googled his peers and saw their publications, and damn that's one peer group) and led the center until taking over reproductive surgery. He is survived by his wife, two sons, a grandchild, and I imagine countless, thankful parents and their offspring. Including the girl born in 1983 whose embryo RE apparently looked at under a microscope, a girl who is now a woman with a child of her own.

Thank you, RE, for everything.