Monday, November 30, 2020

Whining

 Back in the land of long-ago and far-away, when kids were not on the horizon and disposable income could go to things other than medical expenses, I grew to appreciate wine. I grew up 45 minutes away from Napa, my family and I would drive out there for special dinners. After I left the house and my parents divorced, my dad got really into wine. He and his business partners began an annual trip to Napa to thank their employees for the hard work done that year. Dad invited DH and I, and so for about five of the years we lived in California and the trip occurred, we went. 

The trip was always amazing, and relaxing. I began to think of total relaxation as "a Napa state of mind." The down-side of the trip was that I was exposed to some really good wine. Thus, I began to appreciate really good wine. DH and I joined a wine club, and either we bought, or my dad bought for us, some very nice wines. We got a wine fridge, it filled to capacity. We got some wine racks, they filled to capacity. I did my duty to help empty them again! Then this whole 'getting pregnant' business started, and I stopped buying wine, but I also stopped drinking. No drinking while cycling, or while pregnant, or while preparing to cycle again. DH drank the less good wine, but I threatened him with grievous bodily harm if he drank the good stuff when I couldn't. 

Having come to the end of our baby making road, this Thanksgiving weekend, I opened one of the bottles of good stuff. A 2008 Rombauer Fiddletown Zin. That's a little old for a zin, but it had aged beautifully. It was smooth. No tannins left. No hardness, no bitterness. Just jammy perfection. 

I thought about myself and my own aging since I bought that wine. I've got a few less tannins, too. That is to say, that I'm less bitter about many things. I've drawn new personal boundaries around what the 'small stuff' is, and I don't sweat it any more. Quite frankly, in comparison to losing my girls, a lot of life falls into the 'small stuff' bucket. I am also more thoughtful about my actions and how they'll impact others. Part of that is because of raising children, and part of that is because of all the times after my losses that I thought, "I'll be a better, kinder person if I can just have kids." I don't think being kind brought me kids, but it's not a bad thing to strive for!

Unlike the wine, though, I've not been reduced to jammy sweetness. I've developed a new hardness. When it's important to me, I will push and push and push to get to an answer I'm happy with, if I don't like what I'm being told. I will stand up, in situations I would have sat down for in the past. I may not have aged quite as beautifully as the wine, but I have become something different, and something that I consider to be better than what I started with. Here's to aging well, and being able to find a Napa state of mind when needed!

Not sure what #MicroblogMondays is? Read the inaugural post which explains the idea and how you can participate too.

Wednesday, November 25, 2020

You're the Best (Comparatively Speaking)

 In my ongoing effort to find a new job, another opening at my current company has surfaced. I applied and three days later was scheduled for interviews. Completed them on Monday. I applied largely because I'd rather do anything than what I'm doing now, and this is something I know I can do well. It's not the most exciting job ever, but to some extent a job is as exciting as you make it. I'm actually more excited about it after the interviews because I think there are more opportunities and more organizational willingness to pursue them than I'd originally expected.

Who knows if I'll get this job. I think I'm the only candidate right now, so comparatively speaking, I rocked the interviews! They said they'd make a decision by early next week. Our company has a unspoken rule about internal job movement that you start on day 1 of the month after you get the offer. Thus it would be to my benefit if I don't get an offer until December, because it would be helpful to finish out the year in my current role. We'll see what happens. I have pretty much given up on having any expectations about anything, so I don't expect anything positive to come of these interviews. 

Monday, November 23, 2020

Microblog Monday: The System

 I believe that my success in life has been the result of multiple factors. It’s partly due to my own hard work and reasonable level of intelligence. I worked hard during college to get perfect grades, while working a part time job. Those grades got me into a top grad school with a full ride scholarship, and I worked a full time job for my last two years of grad school. All of that put me in a great place for my first job, and working hard at that and subsequent jobs earned me promotions and new opportunities. I’m proud of the hard work.

But hard work was just one part. My success in life was also due to the fact that my parents placed a high value on education. And they owned a nice house in a neighborhood with great schools. That’s the result of their parents also prioritizing education, and having jobs that paid well enough to send both of them to great schools. My success is also due to the fact that my parents were both successful corporate professionals. I learned from them how to act, and how not to act, in interviews, in professional settings. In a broader sense, my success is partly due to the fact that my parents and grandparents and great-grandparents all had the ability to shape this country in the way that best suited their beliefs, through civic participation.

My employer, like many others, has a social media type channel for our employees. Anyone can post anything. Some is done by corporate communications, some by different user groups, some by individuals. Corporate Communications has recently celebrated some of the efforts to further social justice and racial equity. One individual has railed against that, decrying the notion that systemic inequities exist. He posts often, and with great detail, about how people just need to work harder/behave better to do as well as he does. 

To that, I can only look to my life, compared to the lives of people of color. My parents could vote. My grandparents could vote. My great-grandfathers could vote, even if my great-grandmothers could not before 1920. For many POC, equal access to voting didn’t exist until 1965. While the right to vote theoretically existed starting in 1870, the use of poll taxes, literacy tests, grandfather clauses, and white primaries meant that many men of color couldn’t vote until 1965. For POC, their grandparents and great grandparents did not have a chance to shape the country in the way they thought best. That sounds pretty systemic to me.

Looking beyond voting to education, the inequities in the US are even worse. My parents went to good, neighborhood schools.  My grandparents went to good neighborhood schools. For POC, schools were just being desegregated when my parents were entering grade school. Because of the way schools had been segregated, and because of where POC lived, most POC didn’t have good neighborhood schools to go to. They fundamentally did not have the same opportunities that whites did, and therefore their children won’t have the same opportunities and same role models. Once again, sounds pretty systemic.

Let’s talk about home life. My parents and grandparents grew up in decent neighborhoods. To be clear, my grandparents didn’t have it easy. My grandmother was abused by her alcoholic parents and lived in poverty until another relative took her in. My grandfather was one of seven kids (Irish Catholic) in a family that would have been considered poor back then. Despite that, though, they were able to buy a house in a good neighborhood when they got married. They worked hard at jobs that were good for that time. Even my grandmother was able to get a job. Those jobs, however, would have been unavailable to POC, since businesses could, and mostly did, openly decide to hire only whites. Their ability to buy a home was due partly to their hard work and partly to their race. POC did not have that same opportunity. Further, lending laws, redlining, and covenants crafted by local governments expressly prohibited POC from certain neighborhoods. See this article for a good description of the lingering effects of these practices. That is about as systemic as it gets.

I don't understand the perspective that systemic inequities don't exist. It seems to me to be the utmost example of being self-centered to assume that 'if I could pull myself up by my bootstraps, they could too.' That completely glosses over the fact that "my" bootstraps were miles longer and stronger than "their" bootstraps. I don't know how we can fix these issues. I work at a Fortune 500 company where only two or three people have been willing to challenge the 'no systemic racism' poster, and where our head of Diversity and Inclusion has done a few things that were so jaw-droppingly not supportive of diversity or inclusion I don't even feel comfortable describing them on an anonymous blog. Again, I wonder how can we, how can I, make positive change in the face of such resistance. (For anyone asking, "why don't you reply?", as an HR employee in learning & development, with the current executive order, I've been prohibited from replying on the social media channel as my response could be considered an 'official' HR response and therefore could expose the company to a hotline complaint and resulting legal action.) 

Wednesday, November 18, 2020

Real Life

Since T and A were born so early, and spent so long in the NICU, I never had newborn photos done. We decided that with fall photo sessions in full swing, we'd sign up and see if we could get at least some professional photos before the kids are old enough for their high school senior portraits! 

Usually the first snow in Minnesota is the second week of November. October is the time of fall colors, crisp night temperatures, and beautiful days. Thus, we booked our photos for late October. The week of the photos, we got nearly a foot of snow. The day of our photos it was below freezing and extremely windy. Minnesota broke both cold and snow records. As a result, instead of idyllic, happy family photos, we had freezing, cranky, real-life ones. A, in particular, was miserable and sobbed any time DH tried to put him down, including when DH tried to pass him to me to hold.

This photo sums it up perfectly.



To be fair, we did get some gorgeous photos thanks to the talented Melissa Kay. Here are two favorites.




Overall, these depict real life, and it's a real life I couldn't be more grateful to call mine. Sobbing toddlers, red noses, and misplaced clothing, I'm happy to experience it all. 

Tuesday, November 10, 2020

Aneuploid

 We have a little boy with Down Syndrome. 


So that's that. At this precise second, I actually feel ok. Life with two kids is great. It's easy in ways that it wouldn't be with a third. Plus, I love sleep, so I'm not sure how well I'd do with newborn sleep deprivation. Thus my sadness at this outcome is tempered by my realization that there are real benefits to things staying the same.

The hard part now is deciding what to do with our single, day 7 euploid. Actually, the hard part is deciding what I'm willing to do. I'm 100% not willing to do a pre-pregnancy cerclage with only a day 7 embryo. I might be willing to do the operative hysteroscopies, transfer, and if he sticks, then do an in-pregnancy TAC. *Might*. That would be signing up for a great deal of additional stress, anxiety, worry, etc. It would also mean an open TAC, versus a lap-TAC, which I would have done as a pre-pregnancy procedure. So I don't know what I'll decide. We regroup with our RE on Friday and I'll probably ask for a referral to a guy at Mayo who in theory works wonders with Asherman's. It's worth investigating for the sake of the little dude in the freezer. 

Monday, November 9, 2020

Microblog Monday: Today

Today I should get the call with the CCS results for our lone blast. I feel as if I've been holding my breath since May. Whatever the outcome of this call, I'll have to start breathing again. Either in relief, because it's euploid, or in sadness and resignation, because it's not.  Either way, it's time to start moving on.


Not sure what #MicroblogMondays is? Read the inaugural post which explains the idea and how you can participate too.

Saturday, November 7, 2020

On Your Fourth Birthday

Today you should turn four. Would you believe that I still miss you as much today as I did on your last three birthdays? That I still tell you both that I love you, every night right before I fall asleep? I do. 

It's funny to me that despite having friends with four year olds, and despite getting to know your little brother and sister, I still can't imagine what you'd be like. I think that's because I want to know you as who you are, not who I hoped you might be. Since I never got an opportunity to learn who you are, there's a blank spot there. It's not a bad blank spot, but a brilliant, shining, sparkling one. It's almost like the aura that's left behind after staring at a bright object. You can no longer see the object, but the aura remains. 

You may not be here with me, but I believe that you are both brilliant. I believe you are both amazing. I believe that no one is as lucky as me, because I'm the one who got to be your mom. 

I miss you, Alexis and Zoe. I love you, my beautiful girls. Happy Birthday.


Wednesday, November 4, 2020

Outcomes

Because data and organization make me calm and happy, I decided to get the data from my four cycles and organize it. This is not optimized for web viewing, but I think it's interesting none the less.

Here is the outcome for every egg retrieved whose outcome I know. One of my 1PNs has no day 7 record. One egg has no record. The rest are shown below. 

The part that I find interesting is that every single fertilized egg, and even one egg that in theory didn't fertilize (0PN), reached either blast or compacting morula. This last had two non-expanded blasts (1 expansion), so they couldn't be biopsied, but three of four fertilized normally did reach blast. 

Red boxes were aneuploid. Green box is euploid. Yellow box is as-yet unknown.




So there you have it. I suspect that if we were in a position to transfer day 3 embryos, we'd have achieved a healthy pregnancy from some of these. I suspect they just don't do as well in vitro as in vivo. No way of knowing for sure, and it makes me question my decision to do IVF first, then surgery. But here we are. Hopefully round 5 adds another green block or two to the diagram. 

Tuesday, November 3, 2020

On Choice

 On this day of a historic election, with a newly seated Supreme Court justice who is likely to limit reproductive choice, I feel the need to share this. Go. Vote. Your vote matters. It matters to you and it certainly matters to me. As you vote, think of the real impact of your choices. And appreciate the fact that you do have choices. In the days to come, choices may become more limited for many women, if things trend as they seem to be trending today.

___________________________________________________

Some years ago, we decided that we wanted to have a child. It was a decision made after years of preparation and a great deal of care.

We found ourselves pregnant quickly, but there was no heartbeat at 10 weeks. Based on the size of the embryo, development had stopped about a month earlier, before a heartbeat ever formed. The fact that I hadn’t miscarried or bled, or had any issues, made this what’s called a “Missed Miscarriage.” We were both devastated, despite being told that “this happens.”

Because the baby failed to miscarry naturally, we had to seek medical intervention. I had surgery and we were cleared to try again as soon as we were ready.

Our next two attempts both resulted in positive pregnancy tests that faded away by 6 weeks. Testing determined that our 10 week loss had done damage to my uterus, which was preventing new embryos from implanting. The solution was surgery, followed by hormones to rebuild my uterine lining. 

We implemented the solution and were overjoyed that our first attempt resulted in twins. Although I had only ever wanted one child, nothing in my life has felt as right as seeing those two heartbeats on the screen. I loved them with a fierceness I didn’t know I was capable of.

Testing showed that they were both healthy girls. I don’t think I have felt as happy in my life, before or since, than the weeks that I knew I was expecting two healthy girls. 

Our happiness came crashing down when Baby B, Zoe’s, water broke at only 17 weeks. In Europe, the standard of care for pre-viable premature rupture of membranes (PPROM) is to give antibiotics, encourage bedrest, and wait. The main risk is that an infection will develop, as the baby is no longer protected in her amniotic sac. Here in the US, my doctors, at a top research hospital that is currently saving babies born at only 22 weeks, refused to administer antibiotics. They told me that the risk to me was too great. The likelihood that I’d develop an infection was 100%, and if we took antibiotics it could mask that and would jeopardize my life. They urged me to induce labor immediately, if labor didn’t start on it’s own.

Baby A, Alexis, still had all of her water. Neither girl was showing any signs of distress. I understood the risks to my own life and reproductive health. It should have been my decision to take those antibiotics. I should have had the choice. There are hundreds or even thousands of stories out there of women who got the antibiotics and reached viability. But my ability to choose was overridden by people who thought they knew what was best for me and my babies.

We refused the induction and went home to wait. We were told that if we didn’t go into labor within 1 week, we actually had a good chance of making it to viability. The week passed. Then at one week, one day, Alexis’s water broke as well and contractions started. By the time we reached the hospital, her foot had come through my cervix. She was born the next morning, after passing away during labor. She was beautiful and absolutely perfect and the pain of losing her is beyond my ability to describe.

The infection the doctors had feared set in by that point. My uterus was having trouble contracting as a result. Zoe did not come for another 8 hours, by which point an adverse reaction to a medication left me in convulsions. I hemorrhaged so badly they estimate I lost over half of my blood volume. I never got to see or say goodbye to Zoe. My husband tells me she was beautiful like her sister. I was rushed to emergency surgery, and then a day in the ICU.  It was my choice to stay pregnant and take that risk. I am grateful every day that I got to make that choice, despite the consequences. 

After that, we were assured by our doctors that what happened was a fluke. A risk of a twin pregnancy that had experienced recurrent bleeding. So there was more surgery and more hormones, and amazingly, they led to a singleton pregnancy. Another little girl, who we named Quinn.

I asked the doctors for some additional monitoring during her pregnancy. They refused. As a result, we didn’t know until it was too late that my cervix had opened, allowing bacteria into my uterus once again. Emergency surgery was attempted, but despite its apparent success, Quinn’s water broke 48 hours later.

Again we were refused antibiotics. Again we were pushed to induce labor immediately. Again we made the choice to remain pregnant, so long as I wasn’t showing signs of infection and Quinn had enough water for lung development. 

At the hospital that has saved 22 week old babies, my daughter was born at 21 weeks, 3 days. She was born alive and spent her hour of life in my arms, and my husband’s arms. Feeling her move as I held her is the single most important memory I have, and it was the memory that got me through the grief that followed.

It was my choice to stay pregnant. I’m grateful I had that choice. But because I made it, Quinn suffocated to death as her lungs weren’t capable of breathing. I question myself every single day. I question if I made a selfish decision, trying to keep her alive. I wonder if the better thing to do, for her, would have been to induce labor earlier, and let her pass warm, inside, as her older sisters did. That would have spared her the horror and perhaps the pain of the death that she experienced. 

The reality is that I made a choice. I have to live with it. But I believe that every parent should have the right to make that choice. I honestly can’t tell you what I’d do if faced with the same situation a third time. But I can tell you that just as antibiotics should have been my choice, knowing the risks to my body, termination or continuation of the pregnancy should always be my choice. As a parent, I owe it to my children to make those choices on their behalf, with their best interests in mind – even with the knowledge that perhaps the best interest means ending their lives. No parent ever wants to be in that situation. No parent ever should be in that situation. Still, many of us are. The choice should be ours. 


Artificial Oocyte Activation (AOA) Research

 Since I'm on a roll, it's time for another research-based post. Today's topic: artificial oocyte activation (AOA). The fundamental premise, as butchered by my non-scientific self, is that an egg must be activated by the sperm in order for fertilization to occur. Activation is typically caused when the sperm oocyte-activating factor, phospholipase C zeta is delivered to the egg by the sperm. Eggs that are receptive to this factor then generate an oscillation in calcium levels. This in turn leads to a resumption in meiotic activity. Fertilization failure occurs when these oscillations in calcium levels are not triggered, whether due to sperm or egg issues. 

Going back at least 20 years, researchers discovered that exposing a fertilized egg to calcium rich environments can trigger fertilization. This is true in cases where fertilization didn't happen in that specific egg, and in cases where prior retrievals resulted in fertilization failure, but subsequent retrievals, using calcium, show fertilization. 

As a ballpark, fertilization rates after ICSI should be about 75%. After our catastrophic 1 of 5 fertilized cycle, which in turn followed cycles where only 2 of 3 fertilized, I was concerned about our fertilization. There is research out there showing that high sperm dna fragmentation is correlated with lower fertilization. The same is true of low morphology. (Like all research subjects, there are also papers showing that neither of those things is true!). End result, I requested that we use AOA. Here's the research on it.

This 2019 Fertility and Sterility article grouped eggs by cause of fertilization failure: severe sperm related activation failure, less severe sperm-related activation failure, and assumed egg related activation failure. Fertilization rates went from 10% to 70%, 15% to 63%, and 18% to 57% across those three groups, when AOA was used. Live birth rates went from 0% to 41%, 22%, and 22% across the groups. I suspect this is the basis for my RE's statement that AOA only helps with sperm-related issues, although a benefit was seen in egg-related cases, too.

Article text: https://www.fertstert.org/action/showPdf?pii=S0015-0282%2819%2930330-9

Because there are few things better than a good meta-analysis, here's a 2017 Fert Steril article meta-analyzing AOA using 14 studies with over 1,500 ICSI cycles. It found the incidence of clinical pregnancy was 37% in the AOA group and 16% in the non-AOA group. The live birth rate was 27% versus 9%. The part that I find really interesting was that the fertilization rate was 59% versus 47%, which is significant given the sample size, but I question the practical significance. Blastocyst formation was 50% in the AOA group and 10% in the ICSI group. I suppose that explains the difference in live birth! 

Article text: https://www.fertstert.org/article/S0015-0282(17)30488-0/pdf

Looking specifically at DOR patients, this 2015 Fertil Steril found no difference in results. However, only an average of 2 eggs were retrieved in both the AOA and the control group. The study population specifically excluded couples with male factor infertility, abnormal sperm parameters, or a history of prior fertilization failure. In my mind, this wasn't a useful study, since the population didn't have fertilization issues. There were some other oddities, such as retrieval being 32-34 hours post trigger, and the use of unusual protocols for DOR patients (long lupron). 

Article text: https://www.fertstert.org/action/showPdf?pii=S0015-0282%2815%2901675-1

Finally, a 2018 Human Reproduction article. This looked at couples with two or more past cycles with less than 30% fertilization, or 100% abnormal sperm morphology. This study looked at SrCl2 and calcimycin separately. Both treatments produced higher fertilization (49%, 42%) than plain ICSI (27%).  Live birth was also better (42%, 36%, 23%). Differences were found in which activation medium worked based upon cause of fertilization issues.

Article abstract: https://pubmed.ncbi.nlm.nih.gov/30099496/


Monday, November 2, 2020

Anger

 I'm sorry for the vagueness, but I just have to get this out.

Something has happened at work that has perfectly mimicked research showing that when white men behave a certain way it's called "good leadership" and it's rewarded. When women or people of color behave the same way, it's called "aggressive" or "disrespectful." 

Someone that I have the utmost respect for will have permanent impacts to their career because of this bullshit.

I have escalated through the right channels, but there's nothing I can do at this point because the system itself is not equipped to recognize the inherent racism and sexism and respond appropriately. 

I am so, so angry. I can't imagine what this person will feel when they find out. There are additional layers of bullshit that make it even worse and make me even angrier. 

Our country is broken. The way we treat each other is broken. Even when we have the ability to acknowledge the breaks, we lack the fortitude to fix them. 

Here's Your Sign

They say familiarity breeds contempt. I think it's more like 'familiarity breeds disillusionment'. Maybe 'realism' is better.

We decided to go for one final, out of pocket cycle. Across my lifetime, that means that yesterday was my 12th baseline scan. I'm not really a person who believes in signs, but I'll admit that when A and T's cycle aligned, date-wise, to Alexis and Zoe's cycle, that seemed like a good thing. A sign. I had the same feeling of a 'sign' when our early IVF round aligned to Alexis and Zoe's cycle. When the nurse who did my baseline was the same during my first IVF cycle as during A and T's cycle, that also seemed like a good thing. It felt sign-like. It felt good.

Yesterday's baseline was with that same nurse. Instead of thinking "Oh, that's a good sign!", I didn't even notice. It wasn't until I was driving home again that I thought "Oh yeah, it was Gina. She did A and T's scans and some of Alexis and Zoe's. Her measurements are usually large compared to the other techs, so don't panic that she said you have a large follicle at baseline." Only after going through that thought process did I remember the overlap with my past twin cycles.

By now, I know that no amount of good signs is going to lead to a better outcome. No amount of hoping and praying and visualizing the outcome I want. No amount of wearing the same clothes, or the same jewelry or the same facemask will change what happens. Fertility treatments are mostly a numbers game. The best I can do is hope that this round happens to produce a good draw of the numbers. I can acknowledge the small probability that months of HGH use and careful lifestyle choices have had a positive impact. I can take my meds on schedule and go to my appointments, but no matter who does the scans, either these eggs are euploid, or they aren't. Either they'll fertilize, or they won't. Either they'll reach blast, or they'll get stuck at compacting morula like every other embryo we've created. 

Although I don't believe in signs, I'll still put out a plea to the universe. Please, Universe, let this be a good draw. Let the numbers land in such a way that this one gets us a take home baby. Please. Penitence and persistence and effort don't count for anything in this path, but if they did, I've lived them. So, please.