Thursday, April 29, 2010

Changes and thoughts about transfer 3

Changes are afoot in our household.

First, we've decided not to pursue moving at this time. We felt like the situation created too tenuous a position between us and DH's parents, and overall we did not have peace about the timing. So I guess the change is that we're NOT changing this.

Second, I have resigned my job from the non-profit I for which I worked for 5 years.  I've long felt disrespected and under-appreciated, but stayed because I care about the cause and felt like what I was doing mattered. Some things happened this week that just confirmed that it's no longer a good fit for me or for them. Pray for me as I transition. I struggle a lot with feeling significant and I experienced some struggle when I left the non-profit before. I've always found a great amount of satisfaction in what I do; I'm good at it and it's for a cause dear to my heart. It's hard for me to feel significant as a housewife and a secretary (my other job). Don't get me wrong-my husband is a wonderful man to serve with and my pastor is a wonderful boss. But really, whose life was ever changed by a secretary? Did vacuuming ever save anyone's life? I know that my significance is in the Lord, but I guess in this particular area, I'm wired more male than female in that I assign a lot of significance to my job. As I've struggled with childlessness, my job has helped me a lot. In my opinion, parenting is the most important job in the world, and the only one I ever wanted. As I've not had that, having something else to do that I thought really mattered in this world helped me a lot. It's hard to feel like what y0u do matters when your daily activities consist of housecleaning and clerical tasks. So, please just pray for my protection from that. And pray for the organization, too, as they transition and develop a new fit with a new person.

Our friend Mike has another new tumor spot. That hit me really hard yesterday. Whenever something like that happens, the reality of the timeline of life jolts me. But beyond that, of course we're upset for him and for his family. Please, please, please, continue to pray for a miracle for them.

People ask me how I'm feeling about this next transfer. Honestly, between the time I got the date, and the time I got the news about the new tumor, I was doing really well.  I was excited and filled with wonder, and I didn't seem to have a lot of the cynicism and fear and worry that I had with transfer number 2.

But once we got that phone call, I was immediately filled with fear. During Mike's last tumor and hospitalization, we spent a lot of time caregiving for his kids. A lot of time--far more time than we could have ever given them if we had our own young children to parent. God made it pretty clear to us that a major reason our transfer didn't work before was that He needed us to be available for this dear family.  And we were grateful to do it-those kids light up our lives like no one else, and we love their family dearly. Now, knowing that he's sick again, I am filled with fear. I'm literally petrified. I fear that God will say no again now for the same reason as before. Like this whole thing is just going to be deja vu all over again. The fear goes from the pit of my stomach, up to the dark corners of my brain and down into feet that now feel like lead, unable to move. I've never had this kind of overwhelming sense of worry. I'm worried about Mike, I'm worried about our babies, and I'm worried about reaching my breaking point if God breaks out hearts again.

Miscarrying our girls was the most traumatic thing I've ever experienced. The failed transfer was the second. I'm so afraid of enduring it again. These weren't just some clinical science products to us. They were our babies, who we love with all our hearts.

So I don't know what all that means. We obviously don't want to proceed without peace. On the other hand, after one loss, I'm not sure that at least a baseline level of fear ever goes away, so if I wait for that, it will never come.  And at the end of the day, regardless of whether or not we ever meet any of these children here on earth, it's still our responsibility to thaw and transfer them and get them out of frozen limbo and give them a chance at life. We owe them that, regardless of a pregnancy outcome. So even if every single transfer fails, not going through with one just postpones the inevitable, because I refuse to leave my babies in the state they're in. I guess just sometimes I feel like I'm more of a processing plant than a mom.

Mother's Day is the loneliest day in the whole world. Please pray for me, and for all women who suffer from infertility, as we approach it. There is no celebration for mothers whose children are dead or for those whose children have yet to come. But every time you turn around, you're smacked with a silly facebook status update, a television commecial, a store promotion, etc, etc.  During this season, it just feels like the whole world has what you want, and everyone and everything is out to remind you of that. And we still do need to put our own feelings aside and honor our own moms, so please, just pray for us.

As downer of a post as this sounds, we are well in other regards. And in an update to a previous post, it does feel like my knee is getting better, so hopefully, we'll have avoided surgery.

I've got to scoot-we're having dinner with the fam tonight! I hope you all are well!

Sunday, April 25, 2010

Clinic Directives

I just read about a woman who recently underwent a Frozen Embryo Transfer with donated embryos. At the time of transfer, she chose to thaw 5 embryos. Once they were thawed, she chose the best two, and discarded the other 3. She is now pregnant. To stay I'm stunned by and struggling with this is the understatement of the century. But this isn't about my feelings on this. And it's not about judgment on her, because I don't know her. I'm only grieved by her choices. It's about dispelling inaccuracies, myths, and lies. Nadya Suleman was the perfect example of a woman who felt backed into a corner because she was provided inaccurate and incomplete information. And I think that happens all too often, especially in the world of ARTs.

First, discarded is just a euphemism for killed. An embryo is a completely individual, completely unique, completely human, tiny little life. It contains all of the genetic material it will ever have, which means that from its creation, it was as much a human being as you or I. The only difference is size and degree of development. But, just like a newborn is different from a toddler who is different from a teenager, who is different than a twenty-something, who is different from a geriatric, but they are all still equally human, so is this little embryo. Her body still needs to grow, but every single cell of her being is human. Therefore, you cannot discard as though you can something inanimate. You can only kill.

She said that she discarded the other 3 because her clinic refuses to refreeze. I have a couple responses.

First: You are the patient. And YOU are the parent. YOU have the right to determine what happens to your babies and to you. Reproductive Technology is the only medical field I've ever encountered where the doctors expect patients to surrender a carte blanche. With our first clinic, the thaw/transfer contracts basically boiled down to "when in doubt, we (the clinic) make all the decisions and we'll do what we think is best."

But think about it. Would a dentist ever just tell you, "Open your mouth, and trust me. I'll let you know when I'm done?" Who knows if you'd end up with fillings or braces or no teeth at all? Would a Physical Therapist ever map out a plan of action without soliciting your input? How about a cardiologist? For Pete's sake, not even a hairdresser would do that! In every case, the caregiver would assess the situation, take exams if necessary, and then outline your options to you and the two of you would choose one together.

Do you want a gold filling or a silver one? Do you want a hip replacement or physical therapy? Do you want heart surgery or drug therapy? Do you want bangs or a bowl-cut? Why the reproductive field is any different, I don't know. (I realize that things are different when you're in a critical care situation with a comatose patient, but this is not that scenario). It doesn't have to be that way. No amount of authoritative language actually means they have any legal right over you to make those decisions (that's not to imply that they're behaving illegally, it's just to say that just because they say it's their right, doesn't mean it actually is). Sure, it's their right to do business as they please, but it's your right to take your business elsewhere if you're not satisfied.

DON'T sign paperwork you're not comfortable with. We spent DAYS editing our first transfer paperwork, to omit every single reference to and possible loophole for any kind of destruction of life, as well as any ambiguity about decision making. And then we met with the Embryologist to lay out our priorities just in case we'd missed anything in writing. And that was our right and our clinic respected it.

When we switched doctors, we again reviewed all contracts before our babies were ever touched, and were very clear with our directives from the get-go. At the end of the day, YOU make the choices for yourself and your children. Don't let a clinic bully you into making decisions you're not comfortable with. Know, in advance, their policies and procedures for every possible scenario: When are the embryos being thawed? Who decides how many to thaw? What happens if every embryo you thaw survives? What happens if only some that are thawed survive? What happens to those who look "stalled" or "arrested" or "weak" or "slow?" WHO makes those decisions-the doctor or the patient? Do they decide according to "viability" or according to "dead or not dead." ("Viable" in this case is a gray area that means the embryo is technically alive, but the Embryologist will decide what chances it has for survival).

Read your contracts very very carefully. Get to know the heart of your doctor. Is their goal to "get you pregnant" or to honor your wishes, including if it means treating each life as a precious individual? We've been blessed that in both our cases, while our doctors disagree with us on the value and the life of the embryo, they operated according to our beliefs when dealing with our babies. Under any circumstances, do not go in to a thaw/transfer situation without knowing who has the ultimate decision making power in every scenario. Get to know what the nuances in the contract language mean. Be as specific as possible in your directives. On a side but related note, also make sure your clinic has instructions on what to do with your embryos in case you die. In most cases, the embryos would be destroyed unless you tell them differently in advance.

But, if after all that, your clinic doesn't want to let you alter your contract or make your own decisions, or if you just don't think they'll respect the treatment of those lives that you think they demand, get a new clinic! At the end of the day, they are a service-provider. You don't owe them your business or your loyalty, and in most regions of the country, there are several other choices who would love your business. You DO owe your children your protection.

If for some reason you're in a situation where there's only one pony show in town, or only one insurance-approved provider, or some other reason where you're forced to use this clinic/doctor and no one else, then make your decisions accordingly. If you know they won't refreeze, then don't thaw more embryos than you're willing to transfer.  Thawing only takes about half an hour. You can start out conservatively and if they die in the thaw, you can still thaw more before your transfer. I do know that doesn't allow for culturing over days with day 1-3 embies, but I'm of the belief the quicker they're in the natural womb, the better. God holds their lives-if they're going to live, they'll live and He doesn't need a couple extra days in a dish to accomplish that.

However, if you do believe in culturing, then only thaw the amount of embryos you'd be willing to carry in pregnancy if they all survived and implanted, and no more. If that means you end up canceling a cycle because all embryos died in the thaw and you don't have time to thaw more, well, so be it. If Embryo Adoption is how God intends to grow your family, He'll equip you with the means you need to go through as many transfers as it takes. Don't make life-or-death decisions according to economy and odds.

Embryo adoption cannot be about just getting you pregnant. There are now other people involved, so this can't be just about you. As soon as you take responsibility for those babies, your decisions have to be about them. These tiny lives have been entrusted to your care for nurture, shepherding, and protection. Considering Embryo Adoption only as a fertility treatment opens the door for all sorts of decisions that I don't think anyone would make if they considered these precious as they are: tiny little children. These babies need our protection and our advocacy. Their tiny little lives have already had an unconventional and dangerous start. Please be careful as you make your decisions about your future, and theirs. Seek the Lord to direct you with wisdom and discernment as you make decisions. Stand up for your rights, and for theirs. Educate yourself and know the information that could change or harm all your lives. Communicate with your doctors. Know what you don't know. And when in doubt, please err on the side of caution.

For Anyone Still Reading

Hi Everyone,

I have been such a sporadic blogger, that I'll be amazed if there's anyone left reading this blog. For anyone still there, thank you.

DH and I are for the most part, doing well. Our season of busy has ended, our friends are married off, I pulled off a smashingly successful fundraiser, and we're happily settling back into "normal" life.

We're preparing for another transfer, which will be sometime in the next two months. We'll know more about specific dates sometime soon. It could be as early as May 10th, or as late as early June.

If it's early May, it's because the doctor has decided I can forego the sort of "pre-cycle" of birth control that usually comes first. I would love love LOVE to do this because I hate the way birth control makes me feel, and of course, it means it's a whole lot sooner. But I do want what's best for the babies, so please just pray that we and the doctor make the best decision.

I'm getting back into my gym routine, finally. I'm having to relearn a lot of my skills but I'm trying to go at a more realistic pace than before. Going twice a day every day worked well when I was unemployed. It doesn't work so well when I work two jobs. But rather than creating a more realistic workout schedule, I just stopped cold-turkey. I do have one small area of prayer-I hurt my knee this week after following what I've since learned is a little bit of incorrect coaching from my trainer. My doctor said it could be that I just strained the muscle or the tendon. But he also said that I could have torn my meniscus, which would require surgery. I'd really really love to avoid surgery. Would you pray that this injury is mild and that it heals on its own?

I think that's everything! Working now on another post, so stay tuned.

Love to you all!