What Kind of Insane Am I?

Welcome to Microblog Mondays! Want to learn more and read more? Head over to Stirrup Queens for the details!

Although we've had a good regroup with CCRM, and have a plan for the next few cycles, I'm trying to be really thoughtful about what path to take if those fail. Do we move to DE IVF? Do we stop and enjoy being DIN(living)Ks?

Partly it feels as if I'm back to our original decision: do we want to have kids or not? I know that either path will include extreme joy, extreme sadness, opportunities, defeats, and more. In other words, either path will be good. 

With the knowledge that either path will be good, I'm trying to decide what will leave me with the least regret.

If we stop, we get to move on with our lives immediately. No limbo, no more months of waiting for news that might be good or might not. No more spending thousands on medical treatments with nothing to show for it. Heck, we might be able to take vacations, I could have ice-cream again - the possibilities are limitless! That sounds appealing. That sounds relieving. But I've held my baby, and that meant everything to me. I've been pregnant, and felt her move and there's so much I would give to have that again. I see friends with families and the joy that brings. I know there will be regret if we don't try to pursue that option. 

If we try DE IVF, we might end up with a living baby. But we might also spend $40k and get no embryos. Or BFNs. Or have another early miscarriage. Or another late loss. When I tell people what we've been through, I mention that only someone who is insane would still be trying, but even as I say that, I'm secretly proud to be that insane person who isn't giving up. When I think about spending $40k to go through another late loss and be forced to have a c-section to deliver - in other words, spending $40k to make my life a living hell and possibly permanently physically compromise myself - I realize it's something only an insane person would do and I'm not sure I'm willing to be that insane. There is no secret feeling of pride when I "try on" that possible future.

Clearly, importantly, this isn't my decision to make alone. DH's opinion is everything. But I'm usually the 'driver' of big decisions. I'm the one with the spreadsheet and the pro/con list and the plan. And part of being that one is that I feel a deep need to have a position of my own on this topic. I don't yet. 


Something tells me that this one isn't going to be easy. 

A Positive Regroup

We had a very interesting regroup with Dr. B Thursday. I had a list of questions, and we wound up somewhere I'm really happy with, but didn't necessarily expect.

Question 1. What's your take on why this keeps happening? Lining? Aneuploidy? Something else?
A: Most likely aneuploidy. She'd like to see my lining get to at least 7, and there's no way to rule it out for sure, but everything suggests it's an egg issue for these last two CPs, not a lining issue, while the Dec and 2016 CPs were probably lining.

2. Let's talk prednisone again.
A: If I want an immune protocol, CCRM isn't the right clinic. She will put me on low dose prednisone for my next cycle. (I brought a list of six peer reviewed journal articles supporting this. I also acknowledge that I could find just as many that show no result.)

3. Lining was thicker in May. Does that suggest it could improve or give us ideas on what to do to improve it?
A: It could improve. It's most likely that having more days of estrogen exposure due to the long stim was what helped it. As a result, we'll take the following approach: 1 estrace/day vaginally until the dominant follicle hits 14, then increase to 2. We'll keep using the viagra. Estrogen is what makes the lining trilaminar, nothing else can change the pattern, so there's no way to help that.

4. Do my lining issues indicate I need a repeat hysteropscopy?
A: Not yet. We've seen it trilaminar since my last surgery, and we've seen it up to 6.7. I've also been through a lot of "instrumentation", no reason at this time to repeat. We looked at my u/s from trigger day, and there is no clear pattern. When I asked why, she noted that it's probably because things were thicker in some spots than in others. At this point we really just have to hope for the best in future cycles.

5. Ovaries didn't respond until we backed off the estrogen. Thoughts?
A: Largely addressed this with #3. We'll reduce the estrogen and aim to stim for ~12 days - longer than many of my cycles, but shorter than this most recent one.

6. We ordered cetrotide after our August '17 regroup. When would I use it?
A: Only if your LH was rising indicating ovulation. The estrogen seems to be supressing that really well for you, so there's been no need. That might change if we try to stim you for 12 days, so hang on to it.

7. Best guess on our chance of pregnancy if we continue this approach? Where's the tipping point when we should move to IVF, either OE or DE?
A: Impossible to say. She noted that we clearly have fertilization and embryos that reach 12-14 days every time, so she would expect that even if we only retrieved 2-3 eggs, we'd get a blast or two. It's a numbers game as to whether those would be euploid or not. Obviously, changing to donor eggs makes the numbers more likely to fall in our favor. The advantage of IVF is it would allow us to rule out aneuploidy as a problem, and eliminate many of the worries about a late first-tri loss. The disadvantage is that we'd probably only get 2-3 eggs. Also, even euploid blasts don't implant and do miscarry, so IVF would really be diagnostic.

8. If we moved to IVF, is it possible to get a better lining if we don't care about ovulation?
A: Maybe. My OI protocol is their 'poor lining kitchen sink' protocol, so it might give us our best chance. We could try delestrogen injections plus vaginal estrace and vaginal viargra in a mock FET to see what my lining did, and that might get better. Hard to predict. She'd really like to see me at 7 before a FET, and I have gotten to 7 before.

9. If we did IVF, is there any way to improve ovarianresponse?
A: We could do a clomid/FSH cycle if it's IVF and we don't care about lining. That might get us another follicle or two. Still, don't expect more than 2-3 embryos.

10. If we did OE IVF, is there anything we could do to improve egg quality?
A: We could add in HGH. In fact, we could add that now. So, Saizen goes into my current protocol.

11. Do I retake doxy for a future cycle?
A: Yes, unless it's making me really sick.

12. Is a plan of ~3 more OI/TI cycles, followed by a mock FET to test lining, then OE/DE IVF if lining is good enough, reasonable?
A: Yes. Probably wise to test lining before investing in IVF of any sort.

I'm really happy with this. If we throw my current meds, plus prednisone, plus HGH into the mix for 3 attempts and I'm still not pregnant with a baby that can reach the second tri, I'll feel pretty good that we're not going to find the 'gold egg' from my ovaries via IVF, and we can move to DE or DINK. That's a different decision point.

Options

What comes next?

As I sit and wait for this miscarriage to get going, I ponder what should come next. We'll do a regroup with our doctor, but I see a few options. Of course, our meeting with her could take many of these off the table, but knowing only what I know today, here are the six options I see.

1. Continue with OI/TI cycles.
Pros: My lining got better this cycle. I've gotten pregnant this way before. I respond just well enough to get pregnant each time. We make beautiful babies.
Cons: High chance of more losses. Cost of $3-5k per cycle, if I continue to have some med coverage. Time off work, appointments, ongoing stress and uncertainty.
Verdict: Strong possibility.

2. Consider surrogacy, either with own eggs (OE) or donor eggs (DE).
Pros: Living baby is a possibility!
Cons: Cost is too high. Surrogates loose babies, too. After nearly dying during the twins' delivery, I can't bring myself to allow another woman to take that risk on my behalf. Big honkin' note here: this is purely my own decision and I have MAD respect for both surrogates and intended parents. I cast absolutely no shade on anyone else who pursues surrogacy.
Verdict: Absolutely not an option.

3. Consider OE IVF.
Pros: Would PGS embryos to confirm that losses are not due to genetic issues. If I got pregnant, no terror of having to do a c-section if trisomy is discovered after 13 weeks. Genetically related to kid (given my genes, this might be a con for the kid.)
Cons: Cost. Unlikely to succeed, given severe DOR and crappy lining. People still miscarry PGS embryos. I would have to do a mock cycle before we even started to see if we could get my lining thick enough. That would add months, money, and reduce our chances further.
Verdict: Maybe, unlikely.

4. Consider DE IVF.
Pros: If we did this, we'd use AFCC, who has an >80% success rate (live birth). Genetic link to DH. Much more likely to succeed than OE IVF. No rush to figure out lining, since the eggs aren't aging along with me!
Cons: Cost 30-40k . Same lining issues as #3. 80% success is not 100% success - failure still very possible.
Verdict: Solid possibility if #1 continues to fail.

5. Adoption.
Pros: Live baby. No pregnancy risk to me or a baby.
Cons: The only option I can think of that would be more emotionally trying and uncertain than continuing to try ourselves.
Verdict: No. I'm not brave enough for this option.

6. Enjoy DINK life.
Pros: Money. Sleeping in. Alone time. Relative cleanliness of home. Fewer chores. No tantrums. Sleeping in. 100 mile bike rides in summer. Money.
Cons: Never getting to be a parent. Never feeling my baby move again. Never getting to see and help my own child to grow up.
Verdict: Extremely strong possibility.

Based on what Batcheller says, I lean toward #1 through the end of this year. Given my miscarriage rate, that's probably August, October and December cycles, at best. Then either #4 or #6 in 2019. Probably #6. If she says no to #1, then I'm not sure Perhaps we pursue 3, then 4 or 6. Perhaps just 6. If my lining can't get thick enough, then 6 is the only option.

When I created this blog, I picked the title 'Not My Lines Yet' because I was hopeful that someday they would be my lines. I am still hopeful, because even at my worst I'd prefer to be hopeful. But I acknowledge that this may someday be 'not my lines, ever.'

Sending Notes

Welcome to Microblog Mondays! Want to learn more and read more? Head over to Stirrup Queens for the details!

When we cremated the girls, DH and I wrote each one a letter that was cremated with her. I realized today while I was taking a walk that I wanted to do the same for the six babies we didn't even get to cremate. Below is my note to them. I'll take this and write it out and burn it in our fireplace in another week or two. Perhaps that's odd, but it feels right.

_________________________________________________________________

Hello my little ones. I never got to meet you, but for a brief time, I "knew" each of you. For the rest of my life, I will love you.

I know I mostly talk to your sisters, but that doesn't mean I don't think about you. I miss you, you know. When I see something beautiful or happy, I think about how much I want to share it with all of you. There is so much that I wanted for you, and it hurts that you'll never have any of it. You deserved far more than I could have given you, even if you were here. What you will have, always, is a place in my heart and my memory.

I don't know if I believe in religion, but I do know that each of you was alive, inside me, if only for a brief time. I think of you as little sparks. I imagine that your energy and your light isn't gone from the universe, only gone from my physical life. I like to think that all nine of my children, from my littlest to Quinn, somehow know each others' love, just as I hope you know mine.

Many adults worry that they won't leave behind a legacy. That they'll be forgotten when they're gone. I need you to know that you're not forgotten. You are with me every moment of every day. You remind me of good, and hope, and beauty.

You are loved.

You are free.

I hope you are at peace.

Same Bat Time, Same Bat Channel

So today's home pregnancy tests looked pretty good. Newest one is on the right. I got excited and optimistic and hopeful. I went in for a beta.

It's 22. 22 at 12 dpo. That's even lower than my last treatment cycle, and we know how that one turned out.

Seriously, why the fuck do my babies keep dying? As far as stages of grief go, right at this moment I believe I'm on anger. Repeat beta on Monday, because hey, it'll be fun to throw another $95 and miss more time from work to get crap news.

10 dpo

I got a stark white wondfo the morning of 9 dpo/11 dpt. The afternoon of 10 dpo, I got this:

That was yesterday. The lines on the wondfo are not convincing, AND I've got a bad batch of them (expiration date 1-10-2019), that have been know to show positives from water. Up until 9 dpo, I was completely convinced this worked, and this would be the cycle we'd get a take home baby or even babies, given the two follicles. Yes, I know how utterly unlikely that is. What can I say, I really was expecting miracles. Now I'm uncertain.

Why couldn't I wake up in 9 months with a baby or babies in my arms? Now that would be a miracle!

Update: took a FRER with SMU. Here it is with the same test as above. While the lines look more vibrant in real life, this doesn't look good. FRER should not be this close to negative at 11 dpo, not with First Steps darker at 10 dpo. :(

In the Cards for Us

Welcome to Microblog Mondays! Want to learn more and read more? Head over to Stirrup Queens for the details!

A few months ago I signed up for an 8 week fertility yoga course. Normally, that wouldn't be my cup of tea. But I wanted to spend a few hours a week doing something nice for my body (e.g., NOT acupuncture or RE appointments), and I really wanted to build an in-person support network. Since moving to MN, most of my non-work social interactions have been via biking, and I'm not doing that while going through treatments. So I wanted the social.

It's been . . . an experience. The four other participants are lovely. The instructor is lovely. The focus of each week's 3 hour session varies, but we've discussed nutrition, mental health, physical health, and plenty of other topics. Some of it has been science based, but the majority veers deeply into alternative/complimentary techniques. For example, we created vision boards one week. I am not a vision board type of gal, but I've tried to stay open, because I don't see any harm. Plus, it was fun to sniff the rubber cement!

Two weeks ago, the instructor brought in card decks. Oracle card decks. If you've never heard of them, they're like tarot cards, but with different messages. The idea is that you ask yourself a question then draw the card that speaks to you and see what it shares. It doesn't get much more "woo" than this, but again, it doesn't hurt, so why not? The last two weeks I've asked questions, drawn, and received cards that didn't resonate with me.

This week I asked myself 'what do I need to know about this cycle', and drew a card. The message on it? "Expect miracles."

What's that saying? "A broken clock is optimistic twice a day?" I don't believe this was a message from the spirits, or my subconscious, or anywhere else. That said, it was nice to read. And if I'm truly honest with myself, I clearly must expect miracles. Refusing to induce with the twins and Quinn - that was me hoping for a miracle. Doing treatment cycles after everything I've been through, again, hoping for a miracle.

So here I sit, expecting miracles, no matter what's in the cards for us.