Pregnancy & Infant Loss Awareness

This is Pregnancy and Infant Loss Awareness Month, and today was Pregnancy and Infant Loss Awareness Day. To commemorate our lost babies, many in the community participate in the Wave of Light, lighting candles at 7 PM in our own time zones. Here is mine:

 

I am the mother of three lost babies, Athanasios, Barbara, and Cecilia. So I light three candles, one for each. They are on our household altar, an Orthodox Christian tradition. Here's another picture so you can see the Icons a little better:



We have an Icon for the patron saint of each of our babies. the largest one, in the center, is Saint Barbara. The smaller one to the left is Saint Athanasios, and the tiny one to the right is Saint Cecilia. There is also a glass Icon of Jesus, and part of our Icon of King David in this photo (David is the Wacky Wicketeer's patron saint.) We have others on our household altar and in our home, but these are the ones the help us grieve our babies. Each saint has a name/feast day, and it's on these days that we memorialize that lost child and all that happened or didn't happen centering on their part in our lives. In this way, we can remember them and pray for them once a year, without obssessing over the exact dates of events.

My first two losses, Athanasios and Barbara, were "missed miscarriages". This means that fetal death was diagnosed while they were still in the womb. I then waited for my body to push them out. Athanasios took a week. Barbara took two and a half weeks. When people ask what date I had the miscarriage, or I have to fill it out on a form, this always befuddles me. What date do I pick? The date when I had that eight-week ultrasound done and the heartbeat that had been there two weeks before was gone? Or the date I went into my mini-labor? Or the date I passed the fetal tissue? Having one day each year to grieve these events, and the term milestones and due date that were never reached, and the day of my BFP, helps me cope. It helps to keep my life focused on living.

I want to note here that in our theology, humans do not become Angels. Angels are another type of being entirely. So, though I may occasionally use the term to describe my babies in Heaven, I use it loosely, not under the belief that they are actually Angels. The more accurate term to me is "Lost Babies". I prefer to be called a "Baby loss mother" or "Mommy of a lost baby" than "Mommy of an angel". But, for my loss to be acknowledged at all is both an honor and a rarity, so I really don't mind the use of the term angel in doing so.

Thanks for reading this post. And to those that go so far as to acknowledge my losses, a big thank you for your compassion and respect. One in four women of childbearing age experience pregnancy or infant loss, yet it is still a taboo subject. This means many parents are left to grieve alone. I hope you'll help me change that.

PCOS

Photo of Pearls from Wikimedia Commons

September was PCOS awareness month, and suddenly it's over and I realize I didn't do an official post for it on this blog!  I did address my PCOS in my last post, so if you want to know more about it, you can read it here. I also addressed it further in a guest post for the Resolve New England blog. I'm rather proud of that post, and would love for you to go read it at http://www.resolvenewengland.org/2012/09/pcos-from-not-me-to-thats-me/.

Something that a lot of people don't think about is that PCOS, or Polycystic Ovarian Syndrome, covers a huge range of experiences and symptoms. It's even in the name. The term "syndrome" references the fact that it is a spectrum disorder. In some women, PCOS causes ultra-long or non-existent menstrual cycles, but not all. For some it's a cause of infertility, but not for all.  For some, it causes miscarriages, but again, not all. Some women, but not all, have related weight difficulties, and some struggle with facial hair and/or acne. But it's a little different for almost everyone.

The most important piece of information to take from this though, is that PCOS is very common. It's considered the most common cause of infertility, and it is estimated that between 5 and 10 percent of women of reproductive age are affected by it. You can learn more about it here.

The Decision to do DEIVF



Fractal Ovary by Gilberto Santa Rosa

So where are we now as far as trying to add to our family? What’s the next step?

Basically, we have decided our next step will be to use donor eggs, also known as DEIVF (Donor Egg In Vitro Fertilization). It’s been tough getting here. Not just because of all we’ve been through. Making the actual decision has been hard. And since we can change our mind at any time realistically until our donor has started meds, maintaining this decision is also challenging.

First, it took some time for the Wacky Wicketeer to come around to the idea. When I brought it up at first he was just negative about it. Then he told me why – because he couldn’t imagine his DNA combining with anyone’s other than mine. It was this really weird, romantic, unexpected reaction, so I was like, “awww!” and “WTF?” at the same time! Later, we talked about it some more and I told him I didn’t think he realized what he was taking away from me by deciding we wouldn’t use donor eggs. As opposed to donor embryo, he was taking away my opportunity to bring more of HIM into the world. This man I love so much…I just can’t imagine the world without him in it, and part of my safeguarding that, since I know it will happen someday, is in trying to duplicate him. LOL. I know, that sounds strange, but there it is.

As compared to adoption, which he was ready to go ahead with, DEIVF would allow me to be pregnant, give birth, and possibly breastfeed. I would still have the opportunity to be the child’s birth mother, if not its genetic mother. I might be ready for adoption someday, but I’m not right now. To be ready for it, I would need to grieve these things.

He was still reluctant. Then one day he came home from work and said he was ready to proceed using donor eggs. I asked him what changed his mind. He told me a guy at work told him he needed to “just get over it!” Hah! After all that I had said, it took some guy from work who had been through an IVF or two to have his child, telling my Wacky Wicketeer to get over it.

I have heard it recommended that once you have a failed cycle at a clinic, you should change clinics. I think if it was a complete failure, i.e., no frozen embryos remaining, this is likely excellent advice. Each clinic I’ve been to has made little mistakes here or there that impact my confidence in them as a major part of my Fertility Team. So, we decided to change clinics. That same work friend of his, and an online friend of mine, each recommended a particular clinic in the Bay Area. So, we are switching to that one.

Because of the change, and because our initial infectious disease testing has expired, we have a lot to do before we’d actually cycle. I found myself procrastinating in getting the records and such. I finally realized that I hadn’t fully come to terms with the loss of my genetic connection to this theoretical child. I was, and still am, in the midst of grieving this aspect. My therapist says it will continue through to the child’s birth, but that the important part is that I get through some initial stages of it first. What I realized was that I was still in some denial about this being what we need to do.

I have recently lost about 20-25 pounds. For the first time during this infertility roller coaster, I have a healthy BMI. As I’ve mentioned before, the primary cause of my infertility and miscarriages is poor egg quality caused by PCOS. Hence the egg donor route. However, the weight loss, and the fact that I’m now running regularly, can help regulate my insulin, and possibly result in my ovaries being less PCOS-ey. (How’s that for a made-up word?) In summary, my improved weight could mean better fertility. Of course, we still have that pesky little slow sperm problem, so it’s still unlikely we’d get pregnant on our own.

Over the course of this journey, I’ve become a fairly religious person. So here’s what goes through my head: What if God meant for me to get healthy again before having kids? What if he delayed my dreams coming true because I was headed down the same path to diabetes and kidney failure that killed my Grandma at age 63? So just in case, how about giving my body a few cycles of trying out the old-fashioned way? Now that my eggs might be better? Maybe after all, God does intend us to use an egg donor, a donated embryo, or to adopt a born child. Maybe the child or children that we are destined to parent are a different genetic combination. But we can’t know that. I just need to give my body this opportunity, to accept the reality that we need an egg donor.

So, we’re taking our time getting the paperwork and initial testing done for the new clinic. Then we have to pick out a donor. By then, we’ll have gone through a few cycles of trying to get pregnant on our own again. What’s meant to be, will be!

If you have any questions, please ask! Nothing is off limits here. Just please be kind. J

Filling My Life with Other People’s Children

Yes, it has been a loooong time since I’ve posted! I spent most of the year not thinking about kids of my own. Or at least, trying to not think about them. I had a few ideas for posts, but each time felt like I couldn’t focus on this blog at that moment.

One of the things that filled my life this year is other people’s children. This is an emotionally charged topic for us infertiles. Most of us experience so much longing for children of our own, envy is unavoidable. It’s not that we’re not happy for those that have kids. It is completely possible to be happy for someone and jealous of what they have at the same time. It’s part of the grief we have for that loss of what we expected. The loss of a dream of children, whether one or many, no matter how temporary or permanent.

I was there a couple of years ago. I’ve been on this TTP journey for five years now. Between years one and three-and-a-half was the hardest. I went through my miscarriages, my first failed IVF, and I couldn’t bear pregnant bellies, babies, or hardly kids of any age. When I was younger I found other people’s kids mostly irritating anyway. It seemed like so many of them were undisciplined. Now I have a better understanding of child development, and while there are still some brats that I will not hesitate to yell at or lecture, most kids are mostly good, and some even highly entertaining and/or helpful.

I have my Priest to thank for helping me move past my jealousy about other people’s kids. He knew about our infertility and miscarriages, and at the three-year mark, he suggested I help teach the Pre-K Sunday school class. It was hard at first. Seeing that adorable bunch of three and four year olds most Sundays was very emotional for me. But it was also exhausting and fulfilling. The following year, I took over as head Pre-K teacher, and I’m doing it again this school year. It has been wonderful watching them grow up, and even brings a tear to my eye as they move on to their Kindergarten class. We take a summer break from May through September, and I am so excited to start back up in October, and meet my new batch of three year olds!

I also have my nephew to thank, via my only sister. My sister got pregnant in between my two pregnancies that ended in miscarriage. I was so excited for her, and at the same time jealous. Even now, I still struggle with jealousy during others’ pregnancies. My Monchichi (my own personal nickname for my nephew) was born just past my third year mark. From day one, I have felt a connection with him that is indescribable. He reminds me of my sister as a baby, and it sort of feels like watching my best friend grow up all over again! (I’m over four years older than my sister.) I miss him so much when I’m not with him, and much of my traveling this year has been to visit him. I can’t wait until he’s old enough to come visit Aunt Jamie! He’s almost two, and we have conversations where he talks nonsense and I pretend to understand. I also give him raspberries, hang him upside down, and play silly games with him. We laugh so much together! I love him to pieces.

Finally, I have my Godkids to thank, via their mom, my friend Rebecca. Technically, we only sponsored the boy, but I don’t generally feel the need to distinguish them on that level. If that little girl ever needed me, I’d be there for her as much as for our Godson. The boy is 10 and the girl is 8 and a half. They’ve been in our lives for almost 2 years now. This past year I’ve had the opportunity to have them visit on an almost weekly basis. We do some schoolwork, character building, some sports, games, art projects, watch some cartoons, eat dinner and they sleepover. I often read to them at bedtime. They bring such innocence and light into my life! On weeks when I don’t get to spend time with them, life just isn’t quite as good.

I have other friends and family with kids who I would love to know better, too. Unfortunately, many of our friends dropped off the map once they had kids. Some people seem to think that since we don’t have kids, we don’t want to be around them. Admittedly, that may have been true once upon a time, when we were actively grieving. But it hasn’t been for awhile now. Sadly, we have lost friends over these years dealing with infertility and pregnancy loss. But, it has made more room in our lives for our younger friends!

For those of you dealing with infertility, how do you feel about other people’s kids? Has your experience changed over the years? Do you think you’ll try to have more of other people’s kids in your life?

Shaking It Out

My favorite current song is Florence + The Machine's "Shake It Out". After four and a half years of trying to have a baby, failed IUIs, IVFs, and miscarriages, with diagnoses of both male and female factor infertility, I feel like I need to "Shake It Out".

After our last failed embryo transfer in November, with no frozen embryos left, and at almost 36 years old, the odds becoming increasingly stacked against us having a our own genetic child, spending $20,000 a pop on each additional IVF attempt feels like a massive waste of money. Unless something else changes to improve our odds, I don't see us doing more IVF attempts using my own eggs. Neither does the Wacky Wicketeer. To be honest, I don't really want to put my body through that again for these odds. I have no idea how some women go through it seven times. Two has done me in. I can feel my organs, different pieces of my body, rebelling against the process; Screaming at me to stop.

Right now we're not sure what family-building route we will take. Donor egg? Donor embryo? Adoption? There's still no goalie in place, but with our odds, we know better than to get our hopes up that a) we'll get pregnant, plus b) we'll stay pregnant. Miracles do happen, but in the meantime we are researching our options, and taking some time to "shake the devil off our back", as Florence might put it.

Take a minute to enjoy the video and read the lyrics. I think we can all use an occasional "Shake It Out"!



Regrets collect like old friends
Here to relive your darkest moments
I can see no way, I can see no way
And all of the ghouls come out to play
And every demon wants his pound of flesh
But I like to keep some things to myself
I like to keep my issues drawn
It's always darkest before the dawn

And I've been a fool and I've been blind
I can never leave the past behind
I can see no way, I can see no way
I'm always dragging that horse around
And our love is pastured such a mournful sound
Tonight I'm gonna bury that horse in the ground
So I like to keep my issues drawn
But it's always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaaah
And it's hard to dance with a devil on your back
So shake him off, oh woah

I am done with my graceless heart
So tonight I'm gonna cut it out and then restart
Cause I like to keep my issues drawn
It's always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah
And it's hard to dance with a devil on your back
So shake him off, oh woah
And it's hard to dance with a devil on your back so shake him off

And given half the chance would I take any of it back
It's a fine romance but its left me so undone
It's always darkest before the dawn

Oh woah, oh woah...

And I'm damned if I do and I'm damned if I don't
So here's to drinks in the dark at the end of my road
And I'm ready to suffer and I'm ready to hope
It's a shot in the dark and right at my throat
Cause looking for heaven, found the devil in me
Looking for heaven, found the devil in me
Well what the hell I'm gonna let it happen to me

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah
And it's hard to dance with a devil on your back
So shake him off, oh woah

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah
And it's hard to dance with a devil on your back
So shake him off, oh woah


Florence And The Machine Shake It Out lyrics found on http://www.directlyrics.com/florence-and-the-machine-shake-it-out-lyrics.html

My Organization Memes

Hello, dear readers, and happy 2012! Again, it’s been too long since my last post. I have so many ideas for posts backed up in my head, I hardly know where to start. So, I asked around, and here’s where I’m starting: My organization memes.

I do writing, legal and consulting work as an independent contractor from home. So, I make my own work schedule and limit my hours to only part-time. I also do volunteer work for my Church, run a local book club and co-run a local peer support group for infertile women. The point being, I have lots of stuff to do, but no kind of a regular schedule, and much of it not bringing in any money. Since that leaves the Wacky Wicketeer as the primary breadwinner, I also feel it’s my responsibility to be the primary homemaker. Yes, I am a proud housewife!

My unorthodox schedule lends to time passing without much housekeeping getting done, either because it doesn’t occur to me to do it, or it doesn’t have the pressure behind it that makes it a higher priority. So I thought why not use memes? You know, the way bloggers do for regular posts like “Wordless Wednesday”, “Meatless Monday”, etcetera. So here’s what I came up with:

Mail, Media & Medicine Mondays – This helps me make sure I check my two mailboxes a minimum of once a week, and that the mail actually gets sorted, including any coupon clipping. It also is when I schedule social network status updates for the dozen or so accounts I run as a volunteer. Third, it’s when I sort all my pills out into their little weekly/daily labeled boxes.

Tasty Tuesdays – This reminds me to do my meal planning and grocery shopping.

Wash, Water & Weigh-in Wednesdays – Wash refers to laundry. Of course, I can’t do ALL my laundry in one day, but this reminds me to get it started, wash those things I might put off, like extra linens, and do any leftover folding, hanging and ironing. Wednesdays are also for watering the potted plants and weighing myself.

Thoughtful Thursdays – I try to focus on reading, research and writing.

Fresh Fridays – Fresh is just another word for clean. Each Friday I pick a room to make “fresh”. My house has 12 rooms plus the hall/stairs/landing area, so it’s a lot for one person to clean. Having a day each week devoted to one room is supposed to help me keep up without feeling overwhelmed. Having it be a last-minute decision as to which room also allows me to pay more attention to rooms that need it. Check back with me in a few months to see if it’s working!

What do you do to help keep yourself on task and accomplish those mundane things that could easily slip by, like housekeeping?

Also, since I'm so behind on blogposts, what would you like me to post about?