Terms

So I saw a post on Facebook the other day... from the account "Simple Reminders" and it was a story about a pregnant woman wearing a t-shirt with a rainbow over her belly. The story illuminated the fact that this term has become widely more understood, and therefore certain strangers knew instantly that this woman was indeed carrying a "Rainbow Baby". Beautiful of course, and great that awareness of miscarriages and pregnancy after miscarriage is becoming more widely understood and all, but it left me feeling a little empty.

Why? Because, well, like many others, I simply have never been pregnant... at all. And should I fall pregnant, there is no "term" for that baby I would be carrying. It wouldn't be a rainbow baby, no, because I've never experienced a miscarriage. But I HAVE experienced 5 years of infertility, failed treatments and months upon months of disappointment, heartache and crushing of dreams. So why when I get pregnant do I fall under "Pregnant after Infertility"? Not really glamorous, and honestly... those "rainbow babies" also fall into that category too. Maybe "Miracle Baby"? I've heard this term thrown around, but truth be told many other things also fall into this category... premies, babies born with some kind of illness or disease, babies born to women after going through menopause.

I guess part of the question I ask myself, is why do I feel I need to be defined by a term? Why is this important to me. I like to self reflect when I'm feeling angry or upset and really delve into the deeper rooted issue at play. In this case, I think why I feel so frustrated I'm not given a term is that I don't feel validated for the pain I'm enduring. 

Women who go through a miscarriage are warriors. They deserve all the recognition and celebration in the world for their little Rainbow Babies. I don't EVER want to take away from that. But at the same time, I want that recognition and celebration too one day... and it just doesn't seem to be a thing. And I find that disheartening.

So I'm brainstorming a moment here... what kind of term could we coin for such a thing? For women who have repeated implantation failure (in this case we'll specify that to include at least 3 failed transfers).

One idea I have is based on the quote "It's always darkest before the dawn."

Dawn Baby
Sunrise Baby

Next idea is "Risen from the Ashes" because we women of repeated failure feel like we die inside each and every time.

Phoenix Baby

Based on the calm after the storm

Storm Baby

Final idea is based on the fact Hope is eternal, and that we never lost hope, never gave in to failure.

Hope Baby

I'd love to hear any and all ideas anyone has.... or if there already is a term out there, I'd really REALLY love to know about it ;)

Follow Up Questions

These are the questions I asked our doc...

1) We'd love to know your personal gut reaction, thoughts, musings or otherwise. As the professional, we defer mostly to you to tell us in your opinion, why you think we've had 3 failed IVFs as a healthy young couple. What would your plan be moving forward. 

2) Endometriosis... given the fact that we have never gotten pregnant successfully, I am beginning to feel that perhaps it is time to pursue laparoscopy/surgery to discover how extensive the disease is. 

- Do you support this/think this is a good idea?

- Do you think it may aid with implantation?

- Do you think that the endo is a significant factor in our implantation failure?

- What are your opinions on other treatments in terms of FET protocol (lupron, prednisone, bcp prep, or otherwise)?

3) Immune Response

I've sort of felt from the get-go that my body rejects the embryos. I know we did Intralipid, but I'm just curious on your thoughts since they recommend blood thinners in a lot of these cases. I had asked about baby aspirin, but that was not recommended. Most of the immune related treatments would also likely be linked to the above endometriosis topic, but I am curious about the chance of a clotting disorder or what could be done to stop this immune response. 

- I believe I might have celiac (given my severe response to wheat along with confirmed lactose intolerance which often go hand in hand). Do you recommend I have a scope? What would this tell us in terms of treatment (I'm already GF/Dairy Free)?

- Is more testing needed?

- What tests/information is out there for immune related infertility?

4) Assisted Hatching - this is something I sort of had asked about prior to our transfer but was not recommended. 

- How did the zona pellucida on each embryo look before transfer? 

Is this something that may be a factor in our implantation failure? 

- Did any of our embryos begin to hatch before the freezing stage?

If not, could this be indicative of blastocyst arrest (I think that's the term at least)?

5) Male Factor

- How did the sperm sample look on retrieval day?

- Given my clear results (minus MTHFR), could there still be a reason to have Homme InFertile genetically screened (ie. if my eggs are not "strong enough" to compensate for poor dna (or repair it?)?

- Could this be a factor in why we are not getting pregnant?

- How were our PICSI results? Did a large number appear to be normal whilst using PICSI for sperm selection?

- Would you recommend we pursue the DNA fragmentation test at this point to get further insight to any or the extent of the fragmentation? 

- If so, and if Homme Infertile's results are highly fragmented, what would this mean in terms of our likelihood to conceive with his sperm? Would any course of treatment differ?

5) PGS - we had contemplated doing this, however financially were not fully in a position to do so, and in addition, were not certain at our age how necessary it would be. 

- Do you think there is a high likelihood genetic abnormality is the primary reason for our lack of success?

- How were our embryos frozen? 

- If they were vitrified, have you ever done a thaw, test, and re-freeze? What are the outcomes like? 

...I have also heard of thaw, 24 hr test turnaround and day 7 transfer, but not common - thoughts?

- Do you have any recommendations on this factor for us, given the position we are in?

6) Progesterone 

Because I spot during my luteal phase for many days every cycle, progesterone has always been a concern for me... I did NOT spot at all during use of suppositories this cycle which is encouraging.

- Have my progesterone levels been checked and HOW normal were they? (I know there is a normal range, but was I on the low end of normal? etc)

- Many women speak of PIO shots, would this be a stronger course of action for me in the future for FET?

- My progesterone was not monitored throughout my cycle, is this something you would consider moving forward?

7) Lining

I know we briefly touched on this this a.m...

- How was my lining on transfer day? (ie. thickness, evenness etc)

- Receptivity, I know we're both concerned about this, but what would be different in terms of protocol or prepping for transfer? 

- Uterine Scrape (I know this is mostly new, and more common in UK), what are your thoughts?

- Would this mostly be addressed through laparoscopy/hysteroscopy?

8) Further testing

- Thrombophilia ... especially with endo I was surpised you didn't recommend at least aspirin, but is there a chance I have a clotting disorder? Am I crazy to think there is a link?

- male or female karotyping defects (not even really sure what this is)?

- confirm my NK cells or elevated inflammatory cytokines levels? (relates to immune above)

- anti-sperm antibodies in Homme InFertile? I'm probably making tests up ;)

- anything else I'm missing/not thinking of?

9) Surrogacy 

- Given my endometriosis and repeated failure, is surrogacy a strong option for us if lap/surgery come up with no explanation?

- Do eggs/blastocysts conceived by a person with endometriosis have good results with surrogacy pregnancy and live birth rates?

- What are your general opinions/thoughts on this for our case? 

- Obviously this is really expensive, if I had a friend (doubtful but just covering bases) willing to do it for me, what is the testing process like?

Beta Day, Zero Expectations

I so don't want to go in to do my beta. This time around I swore I'd stay on progesterone until I had my beta, and I did... so AF still hasn't come (which is surprising actually) but good indication that I have good absorption of the progesterone suppositories at least. Part of me is curious to see if any level of implantation happened, sure, but I'm just so emotionally sensitive, I don't want to deal with it all right now. I want to just forget about it temporarily.

I'll update later on how that all goes. Hoping to get to chat to the doc today about it, but not holding out a huge hope or anything. We are going away for the week tomorrow and that'll be an excellent distraction.

When we come back it's straight into NIAW (National Infertility Awareness Week). I'll be blogging and entering the "Bloggers Unite Challenge" hosted by Resolve. I strongly encourage you to do the same! It's time to increase awareness, break down stigmas, and #StartAsking !!!

Direct link to details: http://www.resolve.org/national-infertility-awareness-week/bloggers-unite.html

Where to go from here...

Another negative this morning and I know it's really over. I'm technically 13dpo (or 8dp5dt) ... today was our initial test day plan for a reliable result and it's stark white (as expected).

So picking up the broken piece of another failed cycle and trying to move on. Or forward at least. Beta is still scheduled for Monday (though we know what the result will be), and our WTF appointment to follow directly.

I've made the decision to have surgery for my endometriosis before pursuing any further steps. I've found a great doc down in Houston, where we're moving next month or so. I'll have a consult, see what she has to say, do a laparoscopy or hysteroscopy depending on what she suggests and then see what she discovers. We're also considering PGS testing on our frozen embryos but we know that's not ideal/easy/or in some cases even possible since they're already frozen. Hindsight is always 20/20. It just felt so different this time, I guess we were just hopelessly optimistic.

I might be M.I.A for a while as we grieve, move cities (oh goodness), and get settled in our new life. Though doubtful I'll be able to stay away truly since this is such an outlet for me.

I hope to come back and finally finish my story with a happily ever after. One can dream.