When enough is enough

You see it a lot in the Recurrent Pregnancy Loss world and even the Infertility world.  People questioning when enough is enough.  I know even I was tempted by the ‘try one more time‘ even after 6 losses mind game as we planned on a FET after losing Abby.  Often times you see the try one more time turn into a try again and again and again.

When do you stop this crazy trying to conceive(TTC) race?  Or the crazy TTC and hope you don’t miscarry again race?  When do you stop trying drug x or drug y thinking that might make it ‘work’ this time?  When do you decide that you’ve seen enough specialists and have had enough labs drawn?  How many miscarriages is enough?

This is such a personal decision- no one else is walking in your shoes or living with your relationship or parenting your child(ren)(if you have any).  No one else can know what recurrent miscarriage or repeated IUI/IVF failures have done to your body, heart and mind.  Other’s experiences may provide you with some lessons learned but ultimately you need to own your own experience.

This hits home when I realize that I’m a ‘quitter’ in the RPL world (and yes, I was called such by someone on a RPL group).  I only had 6 miscarriages and Sally over there has had 11 and she’s still trying or Jill over there has had three children and then 7 miscarriages and they are still trying.  I think many people try to be encouraging- ‘Don’t give up, don’t quit, you can do it, great things come to those who wait, maybe next time your bean will stick!’  Honestly, I’m not a huge encourager.  I have to be realistic with myself, and I tend on the slightly negative side.  I also don’t get how some women can keep doing the exact same thing over and over and over again with the same result don’t see that as insanity.  But that’s their choice- if it doesn’t drive them insane, I really should have no say over it.  I just think that in being encouraging that we should be encouraging people to be making the best decision for them, not just encouraging them to keep trying.  People shouldn’t feel bad or guilty because they say enough is enough.

Then there are the things that just tick me off-

First is when these women say that if you stop TTC anymore that it means you didn’t want it badly enough.  You must not REALLY have wanted that baby if you aren’t trying again.  This really irks me that women who decide to get off the roller coaster of loss have to feel like had they just WANTED it more, they may have ultimately had success.  I guess we’ll never know, will we?  But I do believe, that when it comes down to it- what is in our hearts and minds has NOTHING to do with what biology may or may not do.  At the end of the day, some women will not be able to carry a(nother) baby and doctors may not ever be able to offer an answer.  You can want it till you are blue in the face, but that is a sad reality for some percentage of people.   It’s bad enough to feel like your body failed you and to stop without a(nother) baby, but she shouldn’t also have to have others tell her that she should have wanted it more.

Next is when someone does FINALLY get that pregnancy success and then she decides that she’s going to swoop in and ‘save’ the rest of us from our RPL.  I’m glad for her when I read that she has a healthy pregnancy after several losses.   And I think it’s great if she says what may have worked for her this time (ie, this time she used steroids or progesterone or xyz)– maybe someone else can take that to an appointment with their doctor.  But it irks me to no end when she generalizes that ANYONE who tries another pregnancy without using what worked for her that they are not advocating for themselves enough or they aren’t seeing the ‘right’ specialist or they should just get the drug and try it anyway because its a harmless drug.  Like we are all stupid and just blindly miscarrying without trying ‘enough’ medical intervention.  I’m glad you attribute a baby aspirin or a progesterone pill to your healthy pregnancy.  But don’t presume that everyone will benefit from that or imply that their miscarriage was their ‘fault’ because they weren’t on this drug therapy or because you didn’t push your doctor enough.  Last time I checked, there are no magic bullets to prevent miscarriage.  There are some crazy (untested, uncertain, and sometimes even dangerous to mom or baby) things out there that people are trying and there are still no guarantees.

So I’m trying to be ok with my decisions and experience.  I’m not there yet and I’m not where I want to be, but I won’t feel threatened or disappointed or whatever emotion when other people take different paths. If someone else is done, I respect that she has made that hard decision.  If someone else is trying again, I respect that hard decision.  If someone is moving on to adoption or surrogacy, I respect that hard decision.   And when someone asks the question, ‘How do you know when enough is enough?’, I’ll offer the most thoughtful response I can and remind them that what’s in their heart is most important.  If they don’t know, then maybe they need some more time to figure it out.  But I owe them more than just blindly saying to hang in there and keep trying till they get their rainbow when that may not be what’s in their heart or what’s best for them.  Only they can know.

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Surrogacy Battles: Part 3 (the cost)

Surrogacy feels like it’s gotten popular in the last decade or so.  Several times a year, it seems there are announcements about celebrity x or y who has used a surrogate to carry their child(ren).  I don’t envy them because I know they are in a similar sucky position of not being able to carry themselves, but I do envy that the financial hit for them is probably nothing like it is to the average couple.

Surrogacy is not cheap.  We are digging into money that had many other purposes to even begin to fathom paying for a surrogacy journey.  We are putting off things like remodeling, updating cars, eating out, taking vacations, etc.  to be able to afford surrogacy.  This is a massive new stress that I never had contemplated, needing to pay all these extra people who will help with various angles along the process.

A brief estimate on costs if you are not familiar with the surrogacy process (and keep in mind, this is just from my reading and limited experience at the moment):

IVF cycle with PGS (we already paid this when we intended to transfer to me, but I still count it in the total as it is what created our embryos)- $18k

Agency (not required, you can do a journey independently but it’s nice to have the protection and matching service that an agency provides.  There is such a wide variety in cost and every agency seems to include different things in the process)- $10-25k

Lawyers (for us and our surrogate)- $3-8k, plus $3-5k for filing the pre-birth order to establish us as parents

Medical bills for surrogate (who knows?! So many group insurance policies do not cover surrogacy anymore and many others will not give you individual coverage that includes maternity at the moment.  Then there is the massive fear that we get done with this process and the insurance company takes back all their payments leaving us with massive medical debt)- $2k-15k+

Compensation for surrogate (this one is the easiest fee to pay out, IMHO.  I’m so thankful that anyone would do this for us that I do not begrudge them compensation for doing this for a person they barely know)- $20-30k plus $3-5k more for twins

Expenses for surrogate ( When someone is carrying your baby, they should not ever have any out of pocket expenses, so we cover things like prenatals, mileage, childcare for appointments, etc)- $3k+

Fees for surrogate (these include some of the less desirable things to pay for- fees for various procedures, fees for a D&C, fees for starting meds, fees for each embryo transfer, fees for having a c-section)- varies widely

Travel expenses (Either having our surrogate travel to our clinic and/or us traveling to be at appointments with our surrogate)- We’ll try to use reward points, etc to save a bit here whenever possible

So at the very minimum, this will probably cost us $80,000 at the upper level it could go up to $125,000+.  Whew, that’s such a scary number.

I was raised to be very thrifty, but there are unfortunately not many things you can do to make surrogacy much cheaper.  Most Reproductive Endocrinologists and lawyers don’t have coupons to print or double coupon days ;)! It makes we wary sometimes to try to use cheaper providers because if it’s not done right the first time, it often ends up costing more to fix.  I also don’t want to try to save money by taking away reasonable compensation from whomever carries our child.   There are some things that we will do to try to make this less of a financial hit- like I said above about using rewards points for travel and negotiating inclusive costs with lawyers, etc.

It’s still daunting.  I’m trying not to let this be (yet another) thing that I’m bitter about.  Not only do most other women get pregnant easily AND not miscarry AND THEN they don’t have to spend six figures to have a child.  I just can’t think about that today.  I’ll pull a Scarlett O’Hara and think about that tomorrow.

Not spending the money (ie, just stopping our journey and living with the one child we have) is just not an option yet.  There’s nothing my husband and I want more- any child is worth far more money than we could sink into this process.  The flipside of this is that this is money that would have been put away for my children’s college or other expenses while growing up that they will not have anymore.  It also makes my decision to stay at home with Sweetie that much harder, because trying to do this on my husband’s income (and our savings) is just scary.  So I may have to go back to work sooner rather than later and Sweetie will no longer have me stay home with her because of needing to pay for surrogacy to grow our family.  Just not fair, but at least it’s within our grasp to be able to try this.   I am vowing to not let the money side of this make me more bitter.  It’s just money.

Surrogacy Battles- Part 1 (the ‘choice’)

We have several frozen embryos left from my second IVF attempt.  When I was pregnant with Abby, I looked at that pile of embryos and actually worried that we had too many.  We didn’t lightly decide to do IVF and I don’t believe in destroying any embryos that are viable/created (personally… I know others feel differently and that’s ok, too).  So I was actually worried about needing to transfer all those embryos for future pregnancies- would I really have to do that many more frozen transfers and possible pregnancies?  (Silly me, look what happens when I worry about things like that)  Then I lost Abby and my uterus’s ability to carry a pregnancy and now I look at that tiny batch of embryos and worry if they will be enough.  Will I have even one child more from that set of embryos?

I think almost every  infertile woman who has a blog has some sort of blog post about adoption.  I would wager every single one of us has heard the ‘why don’t you just adopt?’ question from a friend or family member.  As if it’s the easiest thing in the world to do.  The reality most of us find is that adoption is a very, very difficult path that is full of rules, hoops, and few guarantees.  I looked into adoption for us after our first few miscarriages.  I was shut out immediately by several agencies- we hadn’t been married long enough, we weren’t religious enough, age was a factor, etc.  I was told by others that they had huge waiting lists and were not accepting any new couples at the time.

Biology is not what’s most important to me (in fact, with my family history of cancer and depression and endless other health issues, I wonder sometimes if an egg donor wouldn’t have been a better choice for future children than using my genetic material… but I digress).  Biology does matter to my husband, and I respect his opinion.  So honestly, adoption is just not the best decision for our family.  And we turn to surrogacy.  We have the biology (our embryos) and we have the ‘guarantee’ that no one is allowed to change their mind and parent our child.

I do feel that our embryos that we created should have a chance, I can’t just decide to destroy our little frozen embabies.  It was going to be a chance in my uterus, but now that this is not an option I’m certain that they will have better odds in a gestational carrier’s uterus.  And face it, I feel like I deserve the odds being just a little bit in my favor now, right?

I don’t expect surrogacy to be an easy road.  I don’t know how it will feel having another woman carry my baby.  I have to give up a  ton of control (even more than you give up when you are dealing with infertility and RPL).  I don’t get to feel my baby moving inside me, which was my favorite part of pregnancy.  I don’t get to give birth, which was my second favorite part of pregnancy.  But when I worry about missing those things, I know that what’s important is having the baby and raising the baby.   For me, pregnancy is just a means to accomplish that, nothing more and nothing less.  Maybe I would feel differently if I had never carried a baby to term, I guess it’s just not something I feel I have to do anymore.  I know I don’t watch Sweetie run around like a crazy toddler and immediately think back to being pregnant with her.  I’m not any less of a mother because I didn’t do the pregnancy piece.  So while there will be a small hole of time missed by not carrying my future baby, it’s a sacrifice that makes sense.

I will still get to participate in appointments and ultrasounds (as much as travel allows).  I want to try to induce lactation (and given that I nursed Sweetie for over a year and my milk came in after my 16w loss, it’s highly likely I can do this) so I can hopefully breastfeed my future child.  It won’t be the ‘same’, but honestly, I’m so burnt out on the ‘same’ that this isn’t the worst thing.

I will get some piece of mind and hopefully a little healing.  It feels so relieving to think that the success or failure of a pregnancy will no longer have anything to do with my body.  That alone is worth going through the process of surrogacy.  I think.  (I guess I’ll evaluate when/if we come out on the other end, right?)

What’s the worst that can happen?

So my husband and I are not on the best of terms right now, but we’re trying.  Trying to communicate, trying to pretend that we aren’t as bad off as we probably are.  Anyway, we started having another discussion about this (potential) upcoming FET.

His opinions in a nutshell:

Why not go for it? MMB:  Let me list a few (hundred) reasons.  Or, maybe not even a few hundred- let’s just list 6 failed pregnancies out of 7.  When you have shitty odds, you don’t exactly expect lightening to strike you again (in a good way).  He knows what a toll this has taken on my body, on my mental state, on our relationship, on my ability to be a good mother for our daughter, I really just don’t get how he can even ask this.  

It seems stupid to sit around and wait for a surrogate candidate to be identified when you ‘know’ you can get pregnant. MMB: Um, sure, I can get pregnant, but how does that equate to a take-home-baby when it comes down to my uterus?  And what if I don’t get pregnant this time?  Lots of women have failed transfers.  I’ve had two ‘successful’ transfers take, what if this is my 1 in 3 that doesn’t work?  There’s a new way for me to have a failed outcome that I’d rather not experience.

At least it will give you something to do in the meantime (while waiting for a surrogate). MMB: Hmm, as if I don’t have anything else to do like take care of our toddler and try to make it through each day without imploding or exploding or getting arrested for assaulting some poor random pregnant woman who triggers me. 

We should definitely transfer 2 embryos because that increases our odds and we’ll save a few thousand dollars on not doing another FET if this one doesn’t work.  MMB: Yes, because we don’t really want twins it makes sense to transfer two.  And my body does such a bang-up job with carrying ONE baby, I should tempt it again with attempting to carry TWO?  We transferred two embryos last time (our first transfer and miscarriage #5 was a Single Embryo Transfer) and I was pregnant with two sacs but only one kept growing.

At least you’ll be trying again.  I would think that would be healing for you.  MMB: Who knows?  Right now it just seems to be giving me more anxiety.  But seriously, I think I’m past the point of thinking there’s anything really healing in all of this. 

Whats the worst that can happen?  MMB:  Are you kidding me?  I guess he thinks that the worst has already happened to us so somehow it won’t happen again?  If that’s the case, I hope against hope that we’ve been through the worst and it’s not going to happen again.  But I can no longer even pretend that I believe that this is true.  I tried to think that  after we had lost 5 babies and I was in the second trimester with Abby, that the worst was over and we were in the clear.  Then we lost our Abby and she was scraped out of me on Mother’s Day.  I don’t want that rug pulled out from under me (yet again).  Maybe I’m just far too jaded by my experience (and I’ve heard other people’s horrible stories of loss) that I can graphically imagine other horrible outcomes.  I mean, Mother’s Day has effectively been ruined for me, but I’m sure there’s some other holiday that can also be ruined.  I could make it to 23 weeks this time and then lose the baby just before viability.  I could be on bedrest for weeks and not able to care for Sweetie, and then still lose the baby(ies).  I could carry the baby(ies) to term and then still lose them.  Hell- I could get pregnant with a healthy pregnancy and then somehow my Sweetie gets sick or worse (oh my goodness, I feel like I shouldn’t even type that even though every day I have major anxiety that something bad will happen to her).  Or maybe I’ll have another loss and this time it really will drive me over the edge and I’ll either be dead or committed to a mental hospital.  Yes, I really shouldn’t play the ‘what’s the worst that can happen game’.  Can you blame me?  Why does my husband insist on playing?

Ok, I’m sorry, I have to stop and say that I’m really not saying all these things to my husband in the way I stated above.  Even when we’re arguing, we both try to be respectful and non-snarky.  I just REALLY have to come vent here on my blog because I don’t have any other safe place to vent.  My husband is a wonderful man and he’s doing the best he can. That said, he does see things in a very black and white manner and he doesn’t have (any) of the need to analyze things the way I do.  So it leaves me feeling very unheard on most discussions especially when he thinks it’s a ‘no-brainer’.

I guess maybe I just need him to say that it’s scary as hell to try this again, instead of just trying to wrap this into a neat little ‘of course we should try again’ package.

 

The magical two year gap

As I was growing up, I wanted to have 6 children.  Yep, crazy, I know.  My mom told me she had wanted a large family (she only had three children), but both she and my dad came from families with 7 children.  I loved (and still love to this day) watching the close relationship that my aunts and uncles have.  I loved having so many aunts and uncles and cousins.  I always pictured my children being 2 years apart, that just seemed like the ‘perfect’ gap between them.  Not so close so that you have two baby babies at the same time, but not so far apart that you have to feel like you’re starting all over again.

Losing my little girl in May also represented losing some of that ‘perfection’ I had set up in my mind.  Her due date was one month after my Sweetie’s birthday, so they would have been almost exactly 2 years apart.  I had hoped and expected that I could re-use things because they would have been in the same sizes for the same seasons.  It just seemed so right.  My 4th miscarriage baby would have come when my Sweetie was 15 months old (which did feel kind of soon) and my 5th miscarriage baby would have come at Sweetie’s 18 month mark (which also seemed really good to me- that baby should be here in 2 weeks).  But I really thought that there was no way I would lose my 6th baby when it was just ‘perfect’ on the timing front.

I remember talking with my OB after Sweetie was born and she asked what we were going to do about birth control and family planning.  I should have known then that there was no point in trying to plan, nothing would happen the way I wanted it to anyway.  Of course, I never went on any birth control and almost 2 years later I’m still no closer to having that second baby.  I’m so jealous of the people who get to ‘plan’ their families.  I want my turn to plan and have it work according to plan instead of grieving yet another dead baby.  Now I’ll be lucky if my Sweetie ever gets a sibling, let alone 5 more like I had hoped for as a child.  I no longer want 6 children, but I’d still really love 3 or 4.  It just makes me want to cry.  In fact, I think I’ll head off to bed and do that now.  ‘Happy’ 4th of July.