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.

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

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

Five Snowflakes

The thing about IVF is that it's relatively unpredictable. Most people who haven't been through it don't realize the combination of steps and gambles, twists and turns, along the way. We just had one of these happen to us. Fortunately, it may be a blessing in disguise.

First of all, I've mentioned before that I was overstimmed during my first IVF, which was likely the cause of my low egg maturity rate, and that my stim dosages were decreased this time, in an attempt to avoid overstimulation. Well, it seems to have worked! IVF #1: 21 sizeable follicles, 19 eggs retrieved, 8 mature, 5 embryos after fertilization with ICSI. IVF #2: 9 sizeable follicles, 11 eggs retrieved, 7 mature, 5 embryos after fertilization with ICSI. So you can see that the success rate at each step has been higher.

Today was the third day after egg retrieval (which by the way, was curiously more painful this time). We learned from the Embryologist that all 5 embryos are still growing, although one is slacking. A healthy embryo should be 6 or more cells by this point. Today we had a 9-cell, two 8-cells, a 7-cell, and a 5-cell. If my memory is correct, with IVF #1, we had an 8 cell, three 6-cells and a 5-cell. So the theme of higher success rates at each step of IVF #2 is continuing!

This IVF cycle has been more complicated because we want to do preimplantation genetic screening (PGS) at the day 5 stage, instead of day 3 like last time. In IVF #1, we had a single-cell biopsy done of our embryos at day 3, to test them for a severe chromosomal abnormality, and hopefully prevent another miscarriage. The results came back on day 5, and we had one competent embryo. Two tested as incompetent, and two were inconclusive. Unfortunately, the two that were inconclusive had already ceased growing on their own, or we would have given them a try.

A day 5 biopsy collects more than one cell for testing, and it takes longer to get the results. But it's also more accurate. However, it does require freezing. So our first plan for IVF #2 was to do a freeze-all cycle. But then, considering that we could easily end up with only 1 or 2 embryos to test at day 5, and that the 5-day growth process culls some of the genetically incompetent embryos anyway, we decided to have a back-up plan of preparing for an embryo transfer. In the case that we ended up with only 1 or 2 embryos at day 5, doing PGS seemed pretty pointless. But the result has been that I have had to prepare for both circumstances - a freeze-all, and a day 5 transfer. Having to explain this over and over again to confused nurses was no picnic.

Today, when the Embryologist called with our day 3 results, I was so relieved when she said we still have all five. If we had already been down to 1 or 2 poor-grade embryos, we would have gone in for a transfer today, and I am still in pain from my egg retrieval on Thursday, so I really don't feel ready to get pregnant. I was already getting worried about the very realistic possibility I would need to do a transfer on Tuesday, wondering if I would still be in pain. But, she also had some surprising news.

The Embryologist told me that they always grow a batch of mouse embryos to test the culture medium and lab environment, and that all her mouse embryos had just died. She needed to pull all embryos out of culture. In other words, they all had to be either transferred or frozen. So we froze all five of our embryos. The more accurate term would be "cryogenically preserved", but "froze" is easier to type.

Of course, the idea of something being seriously wrong in my embabies' first nursery concerns me, but I couldn't be happier with the Embryologist's response time, and her focus on saving them. The amazing part is this feels like a blessing. My body does not feel ready to become pregnant right now. This will give me a few weeks to feel completely healthy again.

So when will we get PUPO (pregnant until proven otherwise-describing my state after an embryo is transferred)? Probably anywhere from late September to late October. Vague enough for you? I'll write more about what that part will entail in a later post. For now, we have five snowflake babies resting peacefully. Please pray for them and for us!

As always, please feel free to ask any questions. This often seems like science-fiction to me, but at this point I've probably become so familiar with it, I brush over some points that need explained. No question is too simple.