Dec 062012
 

Despite the fact that I blab about my life here on this blog, I’m not really a “let’s share our feelings” sort of person. So I was just as surprised as you are when, after we lost Sam and Emilie, my greatest source of comfort was our infant loss support group.

We attended regularly for a couple years, and attended a “subsequent pregnancy” group when we were pregnant with Henry and Eleanor. These groups were invaluable to us. It was the one place where people got it, where you could crack a morbid joke or admit your bitterness over others’ pregnancies and people would nod in understanding.

We attend only the rare meeting now, but one we don’t miss is every December, when they hold a candlelight ceremony to remember the children and pregnancies we’ve lost. I look forward to it; it allows us a moment during a busy time of year to reflect on our family and how it came to be. It also gives us a chance to reconnect with others who attended the group the same years we did, the people who knew us as “Sam and Emilie’s parents” when the rest of the world wouldn’t (and still don’t) acknowledge it.

This is the first year that Henry and Eleanor took part in the ceremony, the first year they weren’t too young to understand what was going on. We had explained things as best we could, that they had to stay quiet and be respectful, that they’d see some people (including Mom and Dad) be sad, and that was okay. And they could feel sad or not sad, and that was okay, too. And to my great relief, they did wonderfully.

I was actually a little surprised at how seriously they took the ceremony, and how important it seemed to them. Eleanor was quick to dart up to fetch Kleenexes at the first sight of a tear; I had a fistful by the end. She even teared up a little herself during one or two of the songs, although she’d never admit it (“I’m not crying, Mom, my eyes are just randomly watering.”). Henry looked solemn and listened intently to everyone’s stories. At one point, Eleanor whisper-asked me what day was Sam and Emilie’s birthday and how old they’d be in heaven, then mentioned we should get the candles back out for their birthday next year to celebrate.

When it came time to light the candles, the girls lit one for Emilie and the boys did one for Sam. Eleanor took her job very seriously. She scoped out the candle she wanted, and insisted on saying Emilie’s name as we lit the candle. Henry picked out his candle, too, and both kids held them all the way home, where they insisted on lighting them again. Granted, Henry then wanted to carry his around the house like he was exploring, but overall, I think they understood the specialness of tonight.

I struggle with how much to incorporate Sam and Emilie into our daily lives. I think about them every day, but don’t want Henry and Eleanor to grow up with the spectre of a dead brother and sister always hanging over their heads. But the fact of the matter is that there will always be visits to the cemetery, and candlelight ceremonies, and mentions of people who are in our family but aren’t here with us. It’s a tricky balance to acknowledge the reality of our family but do so in an age-appropriate way. So Andy and I just do our best, answering questions honestly when they’re asked, and talking about Sam and Emilie when we feel it’s relevant. We’re basically making up the rules as we go along, I mean, who can ever expect and fully prepare for their family to be a blend of living and non-living children? Hopefully tonight proved that we’re on the right track.

Jul 262011
 

MISSION ACCOMPLISHED. I’m here! I’m alive and sore and a former uterus owner!

I like to picture my uterus now living a happy, Golden Girls-like existence with my other evicted organs. Somewhere, Appendix, Left Ovary, and the Fallopian Tube sisters are all sitting on the lanai sharing some cheesecake. Uterus shuffles in, adjust her glasses, holds up her hands and starts, “Picture it…Jennifer’s abdomen. 1986.” and they all have a good laugh over the fun they had back then and how big of a slut Appendix was. Left Ovary doesn’t get the racy humor and starts rambling about her small town, and then the Fallopian Tube sisters dispense sage advice with their husky voices while they swish around in their caftans.

And I just re-read that last paragraph and want to assure you that I stopped taking my Vicodin a few days ago. I promise.

So anyhow, the hysterectomy is over and done and went off without a hitch. I’m still the proud owner of part of a cervix; there was too much scar tissue left from my c-section to take it all out like my doctor wanted.

I’m sorer than I expected to be a week and a half after surgery. I tend to underestimate laparoscopic surgeries, since my incisions are so little. My incisions don’t hurt, but my belly still feels like it got kicked around in a bad bar fight. I’ve had pretty bad insomnia since the surgery, like can’t-fall-asleep-until-6am kind of sleeplessness. Which is good because I’ve been able to do a lot of reading, and which is bad because I’ve also done a lot of late-night Netflix streaming of Hoarders and now have to fight the urge to shower in bleach.

The best thing that’s happened is that my pathology report came back stating I showed signs of adenomyosis, where the uterine lining grows into the muscle. No, I hadn’t ever heard of it, either. But I was so happy to hear that news. It gives me a reason why things were the way they were, that my cycles that I thought were bad actually WERE bad. None of my other reproductive stuff ever really had a reason or explainable cause, so it’s nice to finally get a reason for something.

And the BEST best thing that’s happened is that I have a bright, shiny new iPad to replace all the other pads I no longer have a need for. Andy is the best husband ever and surprised me with one in the hospital. It’s so awesome, you guys. I’m surprised I haven’t tried to make out with it yet.

And the BEST BEST best thing that’s happened is that Andy and I have had zero buyer’s remorse since the surgery. We were a little worried that afterwards we’d be all, “well shit, we kinda wanted to use that uterus again.” But we’ve been totally at peace with things and confident we made the right decision. Which is a great way to feel, by the way.

So in a nutshell: good surgery, good result. Although I’m a little worried that Superovary will get lonely being in there by herself. Perhaps I should build her a lanai. I wonder if Spleen and the Kidney sisters like cheesecake?

Jul 072011
 

Uh…I don’t actually have *any* questions, let alone questions I would ask frequently.
Look. Just play along, okay?

Um, okay. But this sounds like you’re going to talk about Girl Issues. What if I’m a boy/your in-law/someone who knew you in fourth grade and don’t want to hear about your Womanly Times?
Then maybe just cover your ears and yell “I CAN’T HEAR YOU” until the end of this post. Or hey, this would be a perfect time to go and finally start watching The Wire!

I decided to keep reading. So, uterus what-now?
Next Thursday I’m scheduled for a hysterectomy. I’ve referred to the whole process as Operation Uterus Eviction because that sounds way more fun.

A hysterectomy? Why?
Because I want to wear white outfits while cute girls hug me (call me, Beyonce!) and we laugh and laugh over how WONDERFUL and AWESOME life is without a womb HAHAHAHA WE’RE SO PERFECT HAHAHA.

No, seriously. Why?
Because I’m tired of being sidelined for seven days out of every 23-30. I’m over having to make sure I have enough dark laundry washed and scheduling things like trips or even workouts around those three or so days I have Very Heavy Womanly Times.

A hysterectomy seems kinda extreme, doesn’t it?
Yes, it does, but remember, this is MY reproductive system we’re talking about, the one that brought us the 2003-2007 Years of Woe. Wouldn’t it be awesome if I could just go on the Pill? Too bad! Birth control pills give me high blood pressure. An IUD seems not fun (especially since my cervix is still sewn almost shut by my abdominal cerclage) and maybe wouldn’t work. An ablation has only a 40% chance of no Womanly Times, plus I’d have to be put under for it anyway because of my cerclage, so if I’m going to be put under why not take it all out with a 100% No-Womanly-Times guarantee?

So you’ll be in menopause, then?
Oh HELL no, I remember those Lupron-induced hot flashes and aren’t keen on repeating them any time soon. No, I’ll still have Superovary. That’s the one rule I gave my doctor: Keep The Ovary. If she gets in there and discovers too much scar tissue to keep Superovary in, she’ll just do the ablation instead and I’ll take my chances. I want to allow Superovary to ride off into the sunset on her own schedule. So no more Womanly Times, but still my monthly dose of Hormone-Induced Crazy!

For a completely elective surgery, you sure have cried a lot about it. What gives?
This whole process and the “so are we really done having (biological) children” discussion that had to precede it has stirred up a lot of emotions and memories. All my crying has stemmed not from the fact that I want more children, but that I didn’t get to enjoy the process of getting the ones I have. I never had a baby shower. I never got to announce a pregnancy and feel happy about it and assume I’d end up with a kid at the end of 40 weeks. Getting pregnant was scary and stressful and expensive. Staying pregnant required getting cut open at 16 weeks and only feeling reassured those few minutes of seeing Henry and Eleanor during my Thursday ultrasounds, but then spending the rest of the week worried that something was wrong. I never sent out birth announcements for Henry and Eleanor because I was still worried that they’d be taken away from us, not to mention that sleeping newborn babies in photos look dead to me so there weren’t any birth announcement newborn photo sessions. Once that uterus comes out, those are the only experiences I get to have. No happy ones will ever replace them.

Even though our experiences are now almost five years past, I’m still affected by them. I had a pre-op ultrasound last week; when they took my blood pressure afterwards it was 152/108. I then burst into tears at my pre-op doctor’s appointment, and had to explain that I didn’t regret the surgery decision, but that it was hard for me to see the childbirth education class flyer hanging on the cabinet right above the “get your 4D ultrasound!” flyer. Not to mention the bitterness I feel over the fact that since age 12, my periods caused so many sick days and so much horribleness and then my body refused to work how it was made to, so I’ve pretty much suffered for 25 years for nothing. I may have two wonderful, perfect, beautiful living four-year-olds, but yeah, I’ve still got issues.

You know, I only really come to your blog to look at your pictures. Why are you telling me all this?
I’ve mentioned before that reading others’ blogs during our infertility/infant loss years really helped me not feel alone. And so I make myself share our story. If it helps one person not feel alone, or helps someone gain more empathy for a friend or family member going through similar circumstances, then it gives a purpose to what I feel is an unfair situation. So that’s why interspersed throughout my ramblings about my Snuggie and iPhone are posts about ladyplumbing.

All those people shouting “I CAN’T HEAR YOU” are starting to get loud. Can I be done pretending to care now?
Of course! I bet you even still have time to get in on watching The Wire.

Jun 172010
 

This doesn’t look like it’s worth $1600, does it?

This ice pack kept our in vitro drugs cool as they were shipped to me, all in one big, needle-filled, overwhelming box. As I unpacked the bags and vials and Follistim pens, I grabbed the ice pack and tossed it in the freezer. “We paid over a thousand bucks for that ice pack,” I told Andy. “We are NOT throwing it away.”

Fast-forward almost four years, and I have two living children who enjoy picnics on their outings to the zoo or park or museum. Every time I pack up our lunch, I tuck that same ice pack in our cooler to keep our Diet Coke and hummus nice and cold. And every time we sit down mid-day for a break and a snack, I get a reminder of how far we’ve come, and how lucky we are today.

$1600? More like priceless.

May 072010
 

It’s that time of year again, where everywhere you turn there are reminders (usually in pink) that Mother’s Day is soon upon us.

And I have a lot to celebrate—a fantastic mom, a terrific mother-in-law, two wonderful three-year-olds. But the people I can’t celebrate with are never far from my mind.

I have been thinking about Sam and Emilie more than usual lately. While spending time with friends and feeling thankful for the job of motherhood, watching my living children running across the playground. While chatting with another mother whose loss is more recent, reflecting on what it took for me to earn those motherhood duties.

Mother’s Day was hard when the world didn’t consider me a mother, and it’s hard now when the world considers me a mother of two. The fact that I’m a mother of four will always make the holiday bittersweet.

•••

And if you’ve ever wondered why I’m so quick to blab about our reproductive struggles, here’s a more eloquent reason why than I could ever create (via a little pregnant, and made for National Infertility Awareness Week):

http://vimeo.com/moogaloop.swf?clip_id=11214833&server=vimeo.com&show_title=1&show_byline=1&show_portrait=0&color=ff0179&fullscreen=1


What IF? A Portrait of Infertility
from Keiko Zoll on Vimeo.

This? This is so spot-on that I’ve cried every time I watch the video. The loss of Sam and Emilie was by far the worst experience of my life, so much so that it often overshadows our other losses and infertility. But all of that stuff really sucked, too. The drugs sucked, the lack of insurance coverage sucked, the hopelessness and waiting and resentment sucked. Infertility can be a lonely and isolating condition, and if sharing my experiences can help make even one person feel less alone, then I will continue to blab and blab and blab.

Nov 172009
 

Today is National Prematurity Awareness Day.

I have experienced the extreme ends of prematurity being the mom of two sets of preemie twins. My first set, Sam and Emilie, died due to being born too early. My second set, Henry and Eleanor, arrived at 35 weeks and came home from the hospital with me. I had steroid shots to develop their lungs, and they were fortunate and never needed NICU time. They both had reflux, and never caught on to breastfeeding, but that was it. No developmental delays or lasting health issues that often accompany being born prematurely.

We dodged the proverbial bullet with Henry and Eleanor, to have babies a month early with no problems. We weren’t so lucky with Sam and Emilie, who were with us for only an hour, born too early to even try to revive. I don’t get to watch them grow up, so I cannot tell you about the issues we face with them. Instead, let me be selfish and tell you how their prematurity affected ME. I know that some of my lingering issues are due to the entirety of our reproductive journey, but the loss of my first set of twins is always at the core.

I did not enjoy my pregnancy with Henry and Eleanor. I never had a baby shower, nor did I send out birth announcements. I did not bond with them when they shared my body, finding it easier to keep a mental distance in case they, too, did not survive.

I did not feel like Henry and Eleanor’s mother until they were three months old. I kept expecting them to be taken away from us like their brother and sister. I still have a difficult time accepting their good health, always wondering when the other shoe is going to drop.

I have a hard time congratulating friends on their pregnancies, my happiness for them overridden by my mind racing with fears of what could go wrong.

I have difficulty being around pregnant women in general. My OB/GYN’s office and Babies R Us can still fill me with panic.

A lot of prematurity stories involve the life-threatening ups and downs of NICU stays. But our story shows that prematurity can affect a family in a myriad of ways. For me, it robbed me of my children, and of being able to enjoy and participate in one of the most basic of life’s functions.

Science and research has saved a lot of babies who would have been lost even a generation ago, but we still have a long road ahead. I hope that some day no parent is able to make a list of prematurity’s aftermath.

Oct 192009
 

We got our minivan last week.

And you know what? I teared up during the drive home from the dealer. But not for the reasons you might think.

To me, this minivan announces that We did it. We had a family.

I remember sitting at work one day when I was pregnant with Sam and Emilie, complaining that with twins I might be forced to get a minivan. “I’m only 30, you guys,” I whined. “I’m too young for a MINIVAN.”

If only I could go back in time and tell that version of me to get over herself. I spent the next four years thinking that I would give ANYTHING to drive a minivan, or chop off my hair, or wear mom jeans.

I can never write enough words on this blog to describe what it was like to feel so hopeless, to spend month after month pumping myself full of drugs and making my body bloated and sore and moody only to find out that once again nothing worked. The experience changed me in ways I will have to cope with for the rest of my life. The experience is also the reason I celebrate things that are easy to take for granted. A minivan. Dirty diapers. Trips to the playground. A house littered with sippy cups and plastic toys.

We’ve enjoyed the new vehicle so far—the nice view from riding up high, discovering all the storage, the dual power sliding doors. But my favorite thing about the minivan is what it signifies: We had kids that LIVED.

May 072009
 

Mother’s Day is tough for me. It was tough in 2005 and 2006, when the world didn’t consider me a mother, despite the birth (and death) certificates of two people who proved otherwise. It was tough in 2007 and 2008, when I had two beautiful, healthy children to celebrate, but still had two others I could not enjoy the day with.

It will be tough again this year. I am so grateful to have Henry and Eleanor, but a holiday that highlights the bond between a mother and her children is difficult to celebrate when not all of your children are with you.

But this year I hope to have a productive Mother’s Day weekend. I’m participating in the March of Dimes’ March for Babies, something I’ve wanted to do since Sam and Emilie were born. My family is the proud product of lots of science. Sam and Emilie were conceived with the help of Clomid, Henry and Eleanor were the result of in vitro fertilization. I’ve had two different types of cerclages as well as many different drugs to try to keep my pregnancies safe. I was even a participant in a scientific study during my pregnancy with Henry and Eleanor. None of this would have been possible without the research of wonderful doctors and scientists.

No mother should ever have to lie in a hospital bed, tilted back with her feet higher than her head, wondering if her body will fail her and cause her children to die. No parents should ever have to give birth, then leave the hospital with empty arms to head home to plan a funeral. No parents should have to spend the first few weeks or months of their child’s life in the NICU, wondering what health problems or developmental delays lay ahead, a scenario I’m still amazed we avoided when Henry and Eleanor were born at 35 weeks.

So on Saturday our family will be walking in honor and memory of our two sets of preemie twins. I’ve been a slacker and am down to the last minute for raising funds, but see that button over to the side there? If you feel like donating, you can click on it and go to my March for Babies page. I’ll leave the button up for a while after the walk this weekend, but until Saturday Farmers Insurance is matching donations.

I love all four of my children, and hope that by walking I’ll help other mothers be able to have a happy Mother’s Day with their healthy children.