How FOF was Born

Two weeks ago Monday, we got good news from the lawyer. The insurance piece looks doable, not prohibitive. So amazing!!! It's a HUGE yet really small step forward. At least we can keep traveling this path and I'm so thrilled. 

I've had such an incredible two weeks. I feel so immensely blessed and ready to dive head first into the next steps. So here goes:

It's time to get down to serious business. I've said it before, the ART world isn't cheap. All of these medical tests and procedures and "hoops we have to jump through" - if you will - to create our little person come with a really high price tag. We aren't sharing actual numbers just yet (don't know if we actually will on the blog) but we will be looking at dead in the face of a number with an awful lot of zeroes attached. I've gotten a lot of research done so far, and we have a good handle on what's ahead, but each phone call I make seems to add about $10K for yet another thing I didn't realize we needed to do. Initially I was thinking the cost of this gestational surrogacy arrangement would be about $30,000 since I have a friend offering to carry for us - but we are above that mark considerably and I'm not done with research just yet. This $00,000 price tag is daunting. No. It's downright frightening! 

We do ok in this life financially speaking - SL and I live pretty comfortably. He has always been a provider and a saver, two things I admire about his character every day. We have all of our physical needs met and we are able to enjoy a lot of our wants as well, with some planning and saving. It could even be said of us that we have more than we need. (If you know anything about my SL, this is mostly true in the computer/electronics department. Of me, it is mostly true in the kitchen.) Part of me feels weird about writing this post. Because we are comfortable middle-class people. We do have more possessions than we need in this world, and we could just slap this outrageous price tag on credit and be done. We could take out a second mortgage or line of equity on our house (if the market wasn't so terrible there might actually be something to do with that, but right now, that isn't even much of an option), or pull from his retirement fund or investments. We talked about all these things and don't feel good about any of them. He says he wants to prepare and provide well for his family, to give them everything he can and wants to - not to go into debt to try and make one. Again, even though my opinion initially was "Apply for credit! Take a loan out. We have great credit... Someone will certainly give us that loan!!" I had to come down from my emotional place of desire for a child and realize his logic. (That happens a lot for us. Sometimes, as an emotional person, it really sucks being with an analytical/logical man. We are the epitome of "opposites attract." Really. I promise.) 

If we had a lot of time to plan for this expense, the way one prepares for a home purchase, or a really really nice car, perhaps the number wouldn't be so scary.  But, like so many infertile couples, we had no idea this would be our path to parenthood. No one painted that picture for us. (I knew I'd have challenges, but I never imagined how many or what they'd be like for real in terms of financial numbers.) SL has goals in life that require a good financial state (more education, retire early, start his own company) and we both want him to be able to pursue those things in the future - for our family. My main future goal has always been to be a mother.  If we have learned one thing about ART world - well, really about LIFE (no acronym there) - it is that nothing is guaranteed. We could do all of this and still not end up with a child. As much as I don't want to think about that, it is a serious reality.   So ultimately we think that, with the potential risks involved, it is unwise for us to "put it on plastic" as my grandma used to say. We just don't think that taking away from the things we have already established and planned for to protect our future is wise. So when we put all of those things together, I knew what we needed to do to get this baby-ball rolling.

So Brave Souls, that is the story of how Fund Our Family (FOF) was born. We are going to raise funds for our future family. We will of course be contributing to the fund at least in the amount it would cost us to have a child in a more traditional way. But there is a very big gap between that number and the "lots of zeroes" number that is our new reality. And that's where FOF is really going to be born, because right now it is more of a concept than anything. 

Tomorrow I have scheduled an appointment with a tax advisor to discuss all the ins/out/do/don'ts of this fundraising adventure. People do it for adoption all the time, however there are very established tax rules for adoption. Not so much with infertility. And no tax credit either (huge injustice in today's society, don't even get me started...I know there a people working on that front and I may soon join the cause.) In the ART world and with surrogacy especially, it seems to be that the main trend is to finance it. Or be a movie star or millionaire. Financing is not the wrong choice for everyone. It is a very valid option. It's just not the one we are choosing. So, even though I've done a lot of research into this myself, I feel like consulting a professional is the best option here - I don't want to do anything wrong in this department! I have a wonderful and trusted friend on board who is going to help me navigate all the fundraising and be the official host of our fundraisers. She is amazing and her name for all of you in the blogs-sphere will be f3c.  (Like C3PO, kind of...but more importantly, continuing my fascination with the letter "F" on this whole idea of Family building.)

These past two weeks I've been working side by side with my Fabulous Fund Finding Coordinator (f3c) organizing our first FOF event. We are putting together a garage sale for our kickoff event. It's this coming Thursday - Saturday. I am amazed at how generous the small group of people I asked to donate have been! As I've gone through our house gathering things, I'm just overall feeling good about purging and getting rid of stuff that has been sitting in storage for years. We have a lot of junk sitting around that I'm hoping can become someone else's treasure while helping us reach our little treasure. My living room and garage this week have resembled an episode of hoarders. It's coming together slowly into organized categories of stuff. It's been a ton of work, with a ton more to do before Thursday. I'm hoping and praying it will all be super worth it!! Prayers for great weather this weekend and lots of customers would be appreciated!  

This is the first of what will likely be many fund raising efforts. So there will be plenty of opportunity for you if you'd like to help us FOF. Keep up with the blog for updates and future opportunities. We are excited to allow you to join our journey, wherever the road leads. 

Oh, Fork!

My heartbreak took on an entirely different face when I discovered that my sweet man, the love of my life, does not share my in passion for our pursuit of parenthood. He is, at current (and maybe forever), uninterested in any non biological solutions to our path to parenthood. 

It appears as though we packed our proverbial bags of hope for this journey with very different contents. This revelation has brought our path to parenthood to a very unexpected dead end. Devistated is far too gentle a term for my reaction to this information. I am finding myself searching for a fork in the road that very likely doesn't (and may never) exsit. 

Clarity

Yesterday was my repeat follicular ultrasound, and we were able to see about my ovarian reserve. But unfortunately, we did not get a "good news" day. We got a very bad news day; a worst case scenario, end of the road kind of day. I am, medically speaking, completely infertile. It was heartbreaking to hear. It is more heartbreaking to process. 

I've been praying for clarity since this journey began. So many brave souls have joined me in that prayer. I am thankful that our diagnostic testing was very clear. I'm glad for the clarity but I fear that I am breaking apart. I really needed a good news day. 

There were two tests for me that were all the evidence that Dr. Feinberg needed to make this fertility potential determination. I failed both miserably.  There is nothing about this that is borderline or questionable. It's one of the first things I have ever experienced in a medical setting that seems very black and white. One of the tests was an AMH level. The other test was the antral follicle count. (The links provide more detail on these terms if you are interested.)  For the AMH level, I was informed that anything around 1 would be a "good score." My AMH result was 0.03. For the antral follicle count the doc didn't actually say what number would be a passing score, or a number she could work with and expect successful outcomes in the lab. She just said my number wasn't it. I have done my own research that suggests an average number would have been between 15-24. A number less than 5 means a woman is not likely to reproduce, even with assisted technology. My number was 2. I'm not used to failing so miserably, not even in the medical realm. 

Dr. Feinberg's facial expression yesterday when giving me news is one I will not soon forget. She was pained. She is in the business of and has dedicated her work to changing challenging fertility situations. She had to tell me she recommend that I pursue other avenues to parenthood. She also reminded me not to give up hope and said that, "sometimes babies fall out of the sky." It is, and will always remain true that we have other options to establish parenthood in the future, if we decide down that path. But I left the doctor's office yesterday with the knowledge that, barring a miracle of biblical proportions (see Abraham, Sarah, & Isaac), there will be no children in this world who share my DNA.

I am proud of myself for walking all the way out of the medical building before (actually twice because I forgot my jacket the first time) I broke down in tears. Today has been a sea of tears - salty, angry, and sad. 

A friend sent me this bible verse today. Psalm 34:18 reads "The Lord is close to the brokenhearted and saves those who are crushed in spirit."
As I reflect on the last week, these words honestly seem a little empty. I know they are not. I know and I trust that these words are a true promise of the true God. But my grief is overshadowing everything that is knowledge right now. I am in a place of emotional brokenness that previously could never have imagined. 

Bumps in the Road

This journey has bumps. We are ultimately hoping for and longing for that to take shape in a baby-sized bump at some point, today the baby-bump experience seems dauntingly far away. 

The second opinion confirmed the first; that natural pregnancy is inadvisable for me. If we are able to harvest eggs (still unknown at this point) we will need to pursue using a gestational carrier. I won't lie, I was hoping the second opinion would be laced with magic and that I would be "allowed" to experience the miracle of growing life inside myself. However, I am oddly comforted today that two opinions match - even if to a disappointing reality. I'm not built to carry a baby on the inside. This saddens me deeply. I will need to grieve this point thoroughly in the coming weeks and months ahead, and maybe partially for the rest of my natural life. But it's clear, confirmed and true.  

If we pursue pregnancy, it will be in the form of what is referred to legally as Third Party Reproduction. It will be expensive. It will be risky. It will be stressful. It will be crazy. We still have to investigate a lot to be determine how expensive, how risky, and how crazy-stressful it will be. There is a VERY long road ahead even to get to the place where we make that decision. 

I am much more comfortable with the demeanor & communication style of our new doctor. While their opinions mirror each other, their approaches are different enough to confirm my suspicions that Dr. Feinberg is a better fit for us. I'm thrilled to be inviting her and her staff on this journey with us. I'm thrilled that she is willing to work with my existing physicians to figure out what will be best for me. I'm also comforted that one of her first warnings to me is that she has self-imposed, hippocratic oath based limits as to how far she will recommend we carry this journey. 

So begins the real journey. The legwork is scary. There is a legal component that (I think) would drive most lawyers crazy. There are physical, biological, psychological, and hormonal tests for at least three people (four if our carrier is married) that all have to be in line for us to proceed. There is an financial component that needs to be ironed out and figured out and funded. Then there is the risk/benefit assessment of the success rate and .... So on and so on until I turn shares of blue I've never seen. 

Oh - and, for those of you who don't know yet, which is probably most of you - there is this small 3.5cm problem we found today on the ultrasound. It seems I am forming another cyst. Just another little bump in the road. Or possibly a really massive bump. We can't know just yet.

I go for more evaluations with my regular GYN tomorrow. He's not yet concerned because size wise, it would have to double to be surgical. But I will be reminding him kindly that for that last cyst's occurrence, he advised me to " take 4 ibuprofen and call me in a couple days." That approach landed him in an OR for 2.5 hours on Labor Day Weekend removing a 9cm hemorrhagic cyst and most of my remaining ovary.  I don't want another surgery - to be sure!! But he was rather blasé about it on the phone today and I was honestly off-put by his tone. Maybe he was expecting a bigger cyst from me. I mean 3cm hardly competes with the 9cm & 11cm ones I presented with the last two times. Maybe 3cm deserves the blasé response that undoubtedly pulled him away from another patient. Our chat in the afternoon shall be a lively one...if I can keep myself out of the ER tonight. 

Sweet dreams, oh, brave souls. Have some for me please? Of bumps baby-sized and cysts that disappear. Tomorrow the journey continues and tonight I am feeling weary.

Crazy Katy Train

Today the newest member of my healthcare team joined aboard the Crazy Katy Train. I think the thing I will most remember from today was not even remotely medically related. She told me this: " 'Best friend' is a level, not a person." [She quoted this from a woman she knows who wrote this in her book & blog (sorry can't remember the name to credit the right person)]

I am so blessed by all my "bests" and I want shout it from the roof-tops. You are all amazing people for being on the journey that is my life; it is forever changed by all of you who care for me on that level. 

Welcome to my world, Dr. Eve Feinberg. It's a pretty great, incredibly unique, crazy-train kind of world. And today you made it a little better by entering it. 

Summary of Infertility Appoinment

And so begins my journey of recording every little detail in a way that was previously reserved for my best-selling author dreams. Welcome, oh brave souls, to my - to our - amazing crazy journey. It's called life, and this is my current account: 

This past Tuesday (9/24/13) we had our first infertility consultation. The recent surgeries (7/26/13 and 9/1/13) threw us here, into the bizarre world of infertility treatment, before we really knew which end was up. And now, whatever we thought about that end before is altogether upside down. The following is my interpretation of the information we gleaned on Tuesday and what we plan to do going forward.

We went into our infertility appointment on recommendation from my GYN, who is also my surgeon. He knows my heart and struggle to get to the point of wanting to try to conceive and was at his end of helpful hints after these two surgeries which drastically change the "plan" he and I had discussed in July and August. We came away from our infertility consultation knowing that I have viable eggs. Dr. Karande (infertility specialist) is ok w/ beginning hormonal protocol for egg harvest. However, in his opinion I'm not a candidate for IUI (Intra-uterine Insemination) or any kind of hormonal protocol to achieve pregnancy, for that matter.  We will (if we decide to pursue this path of egg harvest) need a gestational carrier. 

The financial aspect of this IVF/gestational carrier journey is daunting and life altering. There are a one-hundred-dozen questions that are as yet to be answered in our minds and hearts about the whole process. 

There are also a lot of unknowns and risks associated with the hormonal protocol necessary for the egg harvest. These make my boyfriend (and others who love me) very nervous as he sees what I go through in any given naturally occurring cycle.

There is also is a lot of spiritual consideration happening on both of our parts, as we have been thrust into this journey a bit unprepared. 

Thing is, we decided to try for a baby naturally 5 minutes (actually one week) before these cysts started rearing their citrus-fruit-sized ugly heads back in July. So we didn't even get to really try at all. 

It feels to me in my heart and soul that we are being lead on this specific infertility path purposely. I can't really explain that because this isn't anything I ever seriously considered pursuing in the past.

In July, one week before citrus-fruit-fest began, we agreed that if we were to give our all at naturally trying to conceive and were unsuccessful, that was going to enough for us. Sad yes, but enough. At the point we could not conceive naturally, clarity for our future path, if any, to parenthood would have been reached. We agreed, that at that point (which we expected to be at least 2 years from now) we would actively think about/pursue the adoption option. 

But these two emergency surgeries just recently have hit the invisible fast forward button on our lives. And suddenly this is all very time sensitive stuff due to the fact that the the docs think I am a prime candidate for a third recurrence of this crazy cyst nonsense. Since we don't know when/if that will occur, there is really no way to prepare for parenthood other than freezing eggs or embryos for use for use with a gestational carrier at some point in the future. 

Egg freezing is a relatively new technology and there is not enough research to report success rates. Embryo freezing has a national average success rate of 40% Medically/success rate wise, Dr. Karande recommends freezing embryos. We have mixed feelings about freezing embryos, but understand the medical and scientific reasoning/research behind his recommendation.  (Thoughts on freezing embryos may be information for a later entry. However, on that note: such thoughts posted on my blog will never be a communal debate. This is a very private issue for us and our pending decision only reflects OUR experience. This is not a format where I wish to entertain religious, political, or any other opinion/thoughts on the issue than our own. If you wish to have private conversations with me regarding these issues and know me personally, I will welcome conversation.)  

Upon the third occurrence of a cyst, every doc so far agrees, they will remove the remaining bit of ovary I have left. As our first infertility specialist said, "We want/need to have your decision on this matter as soon as possible in case your tiny bit of ovary starts to misbehave again." 

So for now we stand here:

We are going to pursue a second opinion from a different infertility specialist, Dr. Eve Feinberg. This second opinion appointment will take place on 10/10/13. (This is a super amazing story but one for yet another post.) In short, I received a personal recommendation to Dr. Feinberg, and she to me. She may be a better fit for us as she has some experience with patients who have "progesterone issues." Dr. Feinberg comes with the highest recommendation by a trusted long time friend and was actually consulted yesterday on my behalf by my dear, sweet, amazing friend.

WOW!!!  - I know!!  Yes. It is crazy complicated. 

To answer a question that probably is in everyone's head: yes, we are considering adoption. However, that will have unique challenges for us with my medical history. I think (based on my bit of research thus far) it would take years and years (and a LOT of red tape) for us to be an approved for adoption. It's not impossible, but not an average situation. So, at least in the state of Illinois, unless a blood relative of mine or my boyfriend's has an "unwanted" baby we can adopt, adoption will be just as, if not more, complicated for us than what we are looking at w the current IVF/Gestational Carrier/hormonal- reactions that-could-kill-me nonsense. 

It is all, in a word, mind-boggling. The emotional energy is intense, the mental and spiritual energies, just as intense. We covet every prayer you can pray on our behalf right now.

Ultimately, we both agree on this bottom line: we trust in our amazing GOD (who is the Creator of life and our Savior) above ALL and know that He alone has the power for miracles. We just don't have a clear answer for what our part in the miracle He is writing for us is yet.