Sunday, April 28, 2013

Drum Roll Please

What I failed to mention the other day is some pretty exciting news. During our amnio, the nurse asked if we wanted to know the sex of the babies. While I realize it's a bit early, she seemed fairly confident in her assessment.

Drum Roll Please.

One boy and one girl. 

Memorial to a Friendship

Ok, so I don't really play video games anymore, but that has more to with an addictive personality and knowing I don't have time for it, then not liking them. Still the picture was applicable in this situation, because realizing I lost a close friend didn't hurt as much as I thought it would. Curiously, it would have if it had been any number of other people, but I think my lack of lamenting over it is what this picture is ultimately describing.

I suppose I should back up a bit lest you ask yourself repeatedly "WTH is she babbling about now?"

In 2008 I met someone that I became fast and furious friends with. So much, that she ended up being  in our wedding, as we had been hers the year before. On several levels, (politics, personality, likes) we were about as opposite as 2 women can be, but somehow we made it work and promised to be BFF's fo-eva. Her consideration towards others was what really drew me in about her.

In 2011, things began to change. Initially I chalked it up to the fact that she had a miscarriage and was TTC. Once she was pregnant, she became even more self-absorbed and rather than risk upsetting her by being my normal blunt self, I kept silent. A part of me feared upsetting a pregnant woman who had already miscarried.

Oh hell - I need to give her a name or my grammar skills will be tested too much. We will call her Sarah, because that's the first name that popped in my head of a person's name I don't actually know in real life. Ok, now we can continue with said fake name. Not sure why I need a fake name since my blog is anonymous, but whatever. 

I started noticing Sarah bullying a few of our other friends. Nothing big deal, but enough that it bothered me and it ended up with her losing friends. Every conversation was about her or her pregnancy. She had a blatant disregard for other people's feelings for all things and it was really beginning to show. Still, I chalked it up to hormones and let it pass. There was a few times I tried to approach her about it, but she didn't want nuttin to do with that.

By now hubby and I had begun our path of infertility that we knew we would have to travel when we first started dating. Sarah was distinctly aware of this path, as she was the one that had informed me when I had only been dating my now-hubby a few weeks, that he most definitely would want children being of Indian heritage. She knew my surgery earlier in 2008 prevented me from carrying anymore children. (As a side note: most AWKWARD conversation ever telling a man you've been dating a few weeks: "um yea, I can't carry a baby - wanna keep dating?") 

There were ups and downs in how she treated me, so I began to distance myself. After having to explain to her OVER AND OVER, that no it wasn't my doctor (I had seen several) misdiagnosing me and no there was not a chance I could get pregnant without a surrogate if I just changed to her doctor who was a regular OB\GYN that specialized in helping mothers-to-be that didn't want c-sections. Sigh. I explained the biology of how a woman has to have a uterine lining to carry a baby on several occasions, but I honestly don't think she even listened. Instead she just switched back to stuff all about her. It was tiring in the least.

Meanwhile, my grandfather was diagnosed with colon cancer. My father died when I was 3, so even though I was no longer super close to my grandfather (he had moved back to Sweden over a decade ago), he still was extremely important to me and who I recognized as a major father figure from my youth. I cried to her over his sickness and explained that hubby and I (as well as other family members) would be flying over to Sweden to see him. This was not a short conversation, but one that was rather long. When I saw her about a week later at a surprise birthday party we did for her, she hugged me and said "I totally forgot to say anything about your grandfather dying! I'm so sorry!" I quietly reminded her that he wasn't dead yet and she laughed it off blaming it on pregnancy brain.

He died a few weeks after our visit to Sweden. Nothing from her even inquiring about him or how I was doing. Internally I reconciled this and thought that maybe she just is bad about death. Maybe she didn't want to think about it while she was pregnant. I was making excuses for her, but that was easier than dealing with more sadness in my life that would have happened if I confronted her.

In the midst of all this, I had volunteered to throw a baby shower for her. Her attitude during this time became another slap in the face for me as I had explained to her that money was tight for us since our fertility treatments were expected to very expensive. I was planning the baby shower with 2 other ladies, who did not have tons of cash either. Sarah started telling us what food we needed to cater and about some special cupcakes she wanted that were super expensive. Then she presented us with a guest list of 70+ people. At this point, my patience cracked.

Every female person she had ever known was on that list. People who had simply inquired about her pregnancy were on that list. People from all over the country were on that list. At first I tried to gently explain that it was too many people. That it looked like she was just asking for presents. Then I explained that logistically it was not possible to host such a party. She had only had a little over 100 people at her own wedding! I explained that different people could throw different parties (family, co-workers, friends, etc) and thus maybe we should keep this to immediate family and our group of friends. She threw temper-tantrums and then threw the guilt trip in about how if her mother was still alive, then she would have just had her throw it for her. Her mother had passed long before I had ever met her and I felt this was extremely callous given what I was currently going through with my grandfather.

Ultimately, I had to tell her while I understand she wanted her party a certain way, it was not in my budget to do so given our current expenses. That if she wanted it that way, I would understand, but that someone else would have to throw it. The other ladies backed me up and she finally gave us a more reasonable list of about 36 people. She calmed down, but even with the smaller list (that only about half showed up to), I still went out of pocket for several hundred dollars. As hostesses, we sat in the back and split a bottle of wine to help deal. In the end, I barely got a thank you, although not surprising because  she has always sucked at thank yous. A few months later I got a demand for pictures I had taken during the shower.

I will take a side note here to explain another one of my close friends - we will call her Karey - became pregnant at the time and she was and has always been completely awesome. Two of us threw a baby shower for Karey and she was nothing but a pure delight. She was, and still is, my main go-to-person for all things and played a major role in supporting me through my entire infertility process. I'd like to think she feels the same way towards me because I think she is TOP banana. 

Needless to say, I really started drifting away from Sarah after this. Her baby came and everything was still all about her. I wasn't able to immediately rush over to see her baby, and honestly I didn't want to. I was having trouble all around, including major ones with work and my emotional bank was running low. We saw each other a few times and shared emails, but like many of her other friends, I quit reaching out to her because I felt it was one-sided.

The next year (2012) saw me in India twice for fertility treatments, the loss of my job, and many emotional ups and downs. I simply did not have the ability to prop her up anymore. I wanted to surround myself with positivity and as another friend put it "Sarah is toxic and I no longer can have such toxicity in my life." She contacted me in the middle of one of my trips to India, but I instantly felt it was more because she didn't feel "in the know" and not because she actually wanted to be a supportive friend. A mutual fried had jokingly told her I was dancing with monkeys in India after I sent the mutual friend my monkey siting story and Sarah WANTED DETAILS. This was further confirmed when Sarah didn't respond to a heartfelt response I sent to her about what I was going through in India. She had received the email, but then got "too busy" to respond. Apparently she was really too busy all the time because she never reached out as a friend and instead told the mutual friend she felt too awkward to because SHE didn't know what to say to me.

During this whole time I never lashed out to her or said WTF. For the most part, I'm non-confrontational and tend to give people a ton of chances. By now we were on year #2 of her attitude change and the world still revolved around her. If I sound bitter, it's because I really was back then. Hurt doesn't even begin to describe what I was going through.

After all of this, I did try a few causal emails with her. Our mutual friend disclosed that Sarah felt bad because she had lost many friends. That made me feel bad for Sarah. The emails I sent weren't super deep or long, but still just something to let her know that I still felt something towards her. Mostly joking about one of her favorite shows that I had started watching. Initially I got a brief response, but then she stopped. I wasn't going to sweat it. She was busy or uninterested or whatever. My emails dwindled away as such. We still invited her and and husband to events, but I never heard from her.

Fast forward to last Tuesday. I attended our mutual friend's production and low and behold - Sarah was there. She BLATANTLY ignored me with such rudeness that I was in shock and missed a part of the production. I went over and said hello to her, but she could only spit out a curt hello as I tried to hug her. When I went up to her at the bar she purposely turned her back on me and continued talking to the person she brought. In the show, she was sitting in front of us and besides loudly talking with her friend the first part of the show, she never even acknowledged my presence.

At intermission I went over to some of our other friends that were seated far away and they made me feel better. Some of them had long since given up on Sarah. Some of them reminding me how I had defended Sarah way past when they wanted to deal with her anymore. Oddly enough, Sarah went over to talk to them when I went away.

By the end of the show I had reconciled the situation with myself. Sarah was toxic, and I could no longer let that hurt me. I allowed myself to briefly wonder what was the cause of this latest rudeness, but I didn't feel the need to obsess like I normally would. (Was it because I told other people what was going on in my life but not her? Was it because I was so close to my other friend that had a baby at the same time? Was it because I had drifted away?) Ultimately, I didn't want to ask because I simply didn't care to be a friend with her anymore.

My husband and I talked about it when we returned home that evening. He had been close friends with her as well at one point and she was equally rude to him. He didn't understand how someone could be so publicly rude and had never experienced it before. (I can't remember it happening to me since I was in my early 20's!) We discussed how sad it was to lose someone that had been such an integral part of our lives at one point, but ultimately had become such a drain. We were sad to lose a friendship, but not sad to lose Sarah.

This post is my memorial to a friendship. The picture at the top of this post pokes fun, but I have no desire to be passive-aggressive about it on facebook, nor do I have an interest in stalking Sarah to see what she may be saying about me. This post allows me to put all of my emotions about it to rest and say farewell. And when I think about it, this is much more productive than anything else I could do about it. Including saying F-it and playing a video game. My old therapist would be proud.

Saturday, April 27, 2013

Amniocentesis and another 2WW.


Thursday we had our amniocentesis. What a nightmare. It was really important for us to have one, but holy crap that stuff is scary.

The doctor certainly didn't help. It was that same irritating douchey specialist from the other week.

I guess I should back up a bit since I've been MIA.

The cell-free DNA test ended up coming back inconclusive. That's right, the test that the doctor recommended and then we found out afterwards that the manufacturing company doesn't always recommend for multiples or donor eggs (and since this is surrogacy, my eggs are considered donor) - came back inconclusive. Shocking. They wanted my SIL (our surrogate) to come back in for another. She called me and gave me the update. The nurse was really pressuring my SIL to come back in for another try at this test that is only partially covered by insurance.

After thinking about it, I told my SIL not to get it. It didn't make sense. Why should she have to take extra time off from work for a test that was not going to tell us anything different than the amniocentesis that we had already decided we were doing. Why should we pay even MORE money for a test that didn't give us anything different? Why should we put her through an unnecessary poking that could very well end up being inaccurate or inconclusive. I told her to not worry about going back for the test.

And then she called back. The nurse was EXTREMELY insistent that she come back for this test. At this point I because very irritated (not at my SIL, but at this Dr.'s office.) It was clear that they wanted us to do this test to try and convince us against the amnio. I told my SIL not to stress about it and I would straighten everything out with the Dr.'s office.

Ready to rage war, I started making phone calls. First I called our old fertility clinic ACRM. Our nurse that took over our case when our original nurse was promoted was nothing short of awesome, and I wanted to ping her for her advice. Then I walked outside my office, took a deep breath, and called the specialist's office.

The nurse that spoke to my SIL was not available, but another person in the office was able to call me back fairly quick. That conversation did not go as expected. Actually - it went quite well. The nurse (I think she was a nurse - but we will call her one anyway) was awesome. She is similar in age to me and she confided that she would consider the amnio if she was in the same situation. She explained why the other test was inconclusive and agreed that if we were going with the amnio, then it was not necessary to get the cell-free DNA test - especially so close together. We talked for quite awhile and she restored my faith in this part of the process.

Hubby and I decided that maybe it would be better to have the amnio done at an office closer to us. Maybe staff at a Decatur/Atlanta office would be more professional that some of our previous encounters at the Fayetteville office (like the bad nurse my SIL talked to). Heck, I'll bet the Fayetteville office, even though quite modern and large, has never even seen a mixed Indian/Caucasian couple, much less one using surrogacy. It would be the same doctor (groan), but hopefully no sight of other staff members with similar issues. (Atlanta is completely different than most of the rest of GA.) We would still do the regular appointments closer to where my SIL lives, but we felt safer with the amnio in a more diverse setting.

Fast forward to Thursday: amnio test day. Meep.

We knew that my hubby would be about 15 minutes late due to work constraints, but we really wanted the time to be more convenient for our SIL and let her set it. So when the doctor came in after the initial ultrasound, hubby had not arrived yet. The doctor started off with "are you sure you still want to do this?" and I had to resist the urge of having a fit. Both SIL and I answered in the affirmative.

The doctor then explained that since there were twins, the first injection would have an add-on of dye. The barrel part of the syringe is interchangeable and thus one needle can be used to insert dye, screwed off, and another barrel placed on to gather the amniotic fluid. This insures that you are hitting the same place and that you don't have to puncture multiple times. The purpose of the dye is when they go to do the second amnio on twin B, they make sure they get the fluid from twin b and not twin a again. Apparently the sacs can be all over the place.

Guess what happened? 

Removing fluid for the second amnio showed blue dye. The doctor stopped and asked us if we wanted to continue. By now my husband has arrived and we have to explain what the blue dye is and what it means. It also, all of a sudden, occurs to me that 2 punctures to the same sac means we have just doubled that baby's chance of miscarriage. And the doctor says that if he hits it a third time it will triple it. And if one miscarries, then it can make the second one miscarry.

I sat shaking. Oh - and I haven't even MENTIONED how horrible this looked for my SIL. The first one didn't look painful until they removed the needle, but the second one definitely looked painful. What to do what to do? I felt paralyzed. Secretly I wished my husband would make the decision for us, but I knew that wasn't fair. My SIL turned to us and said she was fine if we wanted to continue. She continuously amazes me.

While the doctor started rambling on about some of our other options, I quietly thought to myself. There was a pause and I explained to my husband again, because I felt it had been glossed over, that the second puncture had increased the chances of miscarriage and a third would triple it. I stated it again to make sure my understanding was correct. The doctor said it was and my husband started asking more questions. Again I reach internally and quietly thought to myself.

What I realized was that my initial fears of chromosomal abnormality had not changed. I still couldn't deal with certain outcomes, but now I was increasing the chance of making a good outcome bad. And I didn't have my comforting statistics on hand to let me know what was optimal. Ultimately I internally decided that I felt we should continue. And to nut punch the doctor if he pierced the wrong sac again. My SIL reiterated she was fine to continue today.

I overheard the doctor saying we could try again in a week or two. This made ZERO sense because then you would definitely be piercing the twin A 3x (because you would have to do the dye again) and the timing would be off if we had to make other decisions. My husband turned stonecold at this point and told him "Just do it now." Hubby looked at me and I nodded my head yes.

The doctor found another area that he sounded more confident with injecting. Complete opposite side that had not been available (baby moved) previously. My husband asked him "between 0 and 100% what it your confidence rate that you won't hit Twin A a third time?" The doctor replied "Oh you can never be 100%" and didn't answer the question. Hubby repeated the question again and doctor replied "I'm very confident". Which of course we followed up with "how much is VERY???" His reply: "At LEAST 50%." Facepalm.

The doctor had to get into a weird hand position to access the third location. The dye check occurred and this time it was clear. We all breathed a big sigh, but the room was still incredibly tense. I could tell it was painful for our SIL. I watched as the doctor withdrew the amniotic fluid and saw his hands visibly shake the entire time. I have no idea if it was because he was old, nervous, or just because his hands were in a really awkward position. I decided that it would make the situation worse to announce "WTF is wrong with your hands?!?" mid-withdraw, so I stayed silent. (I did tell hubby, mommy, and SIL later.)

It was over. We were done. We asked SIL if she was ok. She said she was. Hubby ran downstairs to pharmacy because the doctors office didn't provide any after pain medicine and we didn't want her hurting on the long drive home. Tylenol was fine the staff said. SIL said she was fine, but hubby ran to get some Tylenol anyway.

My mother was waiting in the lobby when we were done. She had graciously volunteered to drive my SIL when we realized the night before that she shouldn't drive herself. Doctor's office failed to mention this. Hubby ran back downstairs and got drinks and Reese's peanut butter cups for everyone. We talked for about an hour to make sure SIL was feeling ok, before the long drive home.

At the end, we scheduled our appointment for the next ultrasound. We decided that Fridays would work best for everyone, rather than Thursdays. The front desk lady informed us that we would have a different doctor if we went on Fridays. Without getting mad, or causing a scene, I simply replied "GOOD" and she made the appointment. 

Saturday, April 6, 2013

All is Well - Hard Things to Think About

Ramble Warning. 
Depressing Statistics for Women with AMA Warning.
VERY Uncomfortable Discussion about Chromosomal Abnormality Warning

I wrote this over a week ago, but was afraid to post. It's been on my mind for awhile and still is. Since this is a blog about my experience and feelings during my journey, the honest thing to do was to post it. 

After a year of infertility treatments and tut-tuts about my age from a multitude of medical professionals, I've become a little more sensitive than usual regarding my age. To compound the problem, a years worth of infertility treatments (3 IVFs in 8 months!) and the stress that goes along with them has left it's physical and emotional mark in more ways than I care to mention. Now I am faced with the added realism of doctors constantly calling me 41 BEFORE my 41st birthday, because they have to consider the age of the embryos  when they are born. Why you ask? Because that is what counts for problems that may arise.

In the land of infertility, 41 is old and can cause a multitude of issues - age related things that most of us women with AMA didn't think of when we started down the dreaded infertility path. Besides decreasing our ability to get pregnant, our miscarriage rate increases, as does the chance that there will be a chromosomal abnormality. This last part is the current worry area we are visiting. Depending on where you look, our odds of having a baby with a chromosomal abnormality is somewhere between 1 in 13 and 1 in 15. (Note this is with fraternal twins, much different for singleton pregnancies.)

On the upside, the odds that both will have an chromosomal abnormality are about 1 and 900. 

If you've gotten this far and are totally against fetal reduction in all cases - then you should stop reading here. I will have total respect for your beliefs and how they pertain to you, but I ask the same consideration for me. All of us in the land of infertility go through our own personal hell, and we really don't need judgement heaped upon us for the litany of hard things we have to consider every step of the way.

Since I am of "advanced maternal age" AND we are having twins, we are considered a high risk pregnancy and our surrogate has to see a perinatologist. We visited the new OB/GYN a few weeks ago (who won't be our actual OB/GYN, but that is for another post) and had our first visit with our Perinatologist last week. Building up to that visit, both my husband and I researched the heck out of the tests we would need to consider.

The consultation did not go well.  

While I didn't think about it before, our Perinatologist must be a part of the same religious medical group as the OB/GYN practice (not uncommon here in the south). This essentially means he Was. Not. Happy. when we were trying to get information about options if the worst case scenario happened and one of the fetuses has a chromosomal abnormality (CA) that we feel we could not deal with. These can range from things that would result in a stillbirth to death after a few weeks of life to some that we feel the quality of life would be extremely poor. Termination is somber idea for us who have fought so hard for life. 

At the doctor's appointment when discussing the CA tests, I uttered a question about "termination" and the doctor stopped short and very ADAMANTLY told me they DO NOT do that there. (Even our OB/GYN didn't act like he did.) Based on his attitude after that, we all began to have a genuine concern that he was misleading us on several counts. Tests he up-sold recommended to us (instead of amniocentesis) that we later found out may not be recommended for twins or donor eggs (which in this case, my eggs would be considered the donor eggs.) This is especially odd since I'm sure twins takes up a large part of his practice. Additionally, based on information we knew, some of his numbers for risk were off. (Example of that is below.) Finally, he suggested dates for the amniocentesis that would not allow us to get the information back in time (for GA law) should it be one of the items that we would consider termination. 

When I asked him directly about risk percentage of CA for what he was recommending - cell-free fetal DNA that tests for 3 types of CA - versus and the difference of the additional CA items discovered with amniocentesis, he assured me that miscarriage through amniocentesis was greater. (We do not have confidence that he was honest here.) 

My hubby says this is confusing how I say it, so I'll try to clear it up.
(Chance of any CA (for 1 baby) in my age bracket with twins = 6-8%) - (Chance of one of the 3 types of trisomy that his test is for - variable X) 
Is this > (Risk for miscarriage for doing an amniocentesis (.3-1%)?

is 7%-X > 1%

So theoretically, if the cell-free fetal DNA tests only 4% of the CA's, that still leaves us with 2-4%  untested risk. In my mind, that is a higher risk than the .3-1%  from amnio. This isn't even including the other things amnio tests for that are non-CA. That 4% is probably pretty close estimate. 

All of this is a major problem, but to get a new specialist would could cause us to run past the time period that were are so precariously balancing in at the moment.  

Don't get me wrong, this is not something either of us takes lightly. I shouldn't even have to justify it as everyone has their own limits - and yet I still feel an overwhelming need to do so. We have gone through so much and if we had to make a decision like this, it would be horrific. But that said, both my husband and I are on the same page on what we would and wouldn't do when faced with certain results for certain tests. And our SIL/surrogate agrees as well.

Not only do we have to consider what we could handle at the birth of a child (death being a major one), but also as we age. Both of us have had a lot of experience with people important in our lives that have some very severe issues - both young and old. Enough that we wonder what will happen when everyone is much older and unable to physically care for them. With our siblings (and us) all in an older age group, the option of family being able to step in probably would not be available to our babies. Unless I left the burden to my son, which I don't think is fair at all. 

A child born with a severe chromosomal abnormality can have devastating effects. More than likely one parent will have to not work, which can be a big blow in income. Add the costs of medical and 1000 other things normal people don't think about, and any savings could be wiped out in a very short time. It only money right? Yes and while that may be true, older parents entering their 70's and 80's may have zero money left over to care for their child when they no longer can (much less themselves). They are then faced with the VERY REAL probability of a mentally and physically disabled child that will be sent to a state run facility. Knowing the child will spend the rest of his/her life potentially living in hell is just not something we are prepared to risk. 

So while I absolutely despise that we have to think about things like this, I guess I feel it's important to share. Because I think it's important we all know these things before we jump in.* That may not change our minds, in fact I can almost guarantee in most cases it won't, but maybe if someone is on the fence about other decisions (such as donor eggs)** then the information will be important to them. We all get so caught up in the idea and worry of having a baby, that we forget some of the other, very real, life changing concerns.

In my mind, there is no right or wrong answer with these tough decisions. I place no judgement on those of us that don't even want to know about things like this. Nor do I judge those who decide things differently than we would. In the end, we are all left with our own decisions and we must choose what we can live with 1, 5, 40 years from now - not what matters to outsiders looking in.

Sigh. I told you this would be a rambling post. We had such a small chance of getting pregnant. Heck, our chance of miscarriage was higher than our chance of getting pregnant. If we can just make it past the amniocentesis, then I will be able to breathe. For a little while at least. 

*In our experience, which is A LOT of different medical professionals, we really did not get enough information about all of the risks for my age. Really the only one that was relayed to us was our lower chance of getting pregnant. I'm not sure if we would have made a different decisions, but I think medical professionals need to do a much better job of informing their patients about these risks. 

**Even this does not guarantee that all will be fine and dandy as many here in IF blog land can attest.