Very Bad News

“Anencephaly”

“Incompatible with life”

“Worst type of neural tube defect”

This has been the most horrible, awful week of my life. And I’m not exaggerating, not even a little bit.

Monday, September 12

I received a Facebook message from a high school classmate, someone I see around town occasionally. The Buddy Walk, a fundraising and awareness event for Down syndrome, is coming up soon, and I know she’s heavily involved, so I just assumed she was contacting me about that. I waited until later in the day to read the message. When I finally got around to it, she tells me that her cousin, and my friend, died the night before. Suicide. I was shocked, but not exactly surprised. I knew she struggled with anxiety and depression for quite some time. But I had no idea how bad it was. No one did. I somehow muddled through work, periodically looking at her Facebook page and the final messages she had shared late the night before. If only I had still been awake to see them, I kept thinking. I looked through all the photographs on her page. She was a wonderful photographer. In fact, she photographed my wedding, and took all of my daughter’s professional photos from birth. She never really liked taking pictures of people, but she would make exceptions for friends and family. It was hard to believe she was gone.

Tuesday, September 13

Still in shock and saddened by my friend’s death, I was looking forward to today and my anatomy scan. I wasn’t worried, because I had just heard baby’s heartbeat on my trusty home Doppler that morning. I couldn’t wait to see my baby, and maybe even come home with a nice image of her face.

The ultrasound tech was friendly and upbeat. She pointed out all of baby’s parts and noted how much she was jumping around. At the end, she said baby was lying really low, so she wasn’t able to get a good look at everything, and told me to expect to return in a couple of weeks. She sent me home with a few pictures of baby’s hands and feet.

An hour later, in my OB’s office, I found out the truth about why she didn’t let me see her face. Anencephaly. Incompatible with life. Those were my doctor’s words. Devastated is an understatement. The OB had me call my husband to deliver the bad news to him, too. She told us both that while she wanted us to see a specialist for confirmation (an MFM, or doctor of maternal fetal medicine), she was confident of the diagnosis. The condition is fatal. She will not survive.

We went home in tears, and I spent the rest of the day and night crying and telling my baby that I was sorry, so sorry that my body had failed her. I told her that I loved her with all my heart and soul, and that the universe was a son of a bitch, and that we didn’t deserve this horrible situation. I told her how much she was wanted, about all the things we had planned as a family. I cried until my head pounded, and then I cried even more when I realized that there was no longer a reason for me to avoid taking Advil.

Thursday, September 15

My husband and I left our toddler with my mom at 6:00 am to make the 3 hour drive to the MFM. Before the ultrasound, I found myself hoping, even praying, that my baby wouldn’t have a heartbeat. I already knew the outcome would not be good, that we wouldn’t be bringing this baby home. But as long as she had a heartbeat, the laws in my state would limit our options moving forward. So, I hoped for no heartbeat, something I never dreamed I would ever do.

The doctor confirmed the original diagnosis, adding that it was pretty much the worst type of neural tube defect possible. He said she didn’t have a brain, just a the stem, which was why she still had a heartbeat. Her body was developing normally, but her skull above the chin was missing. No nose, no eyes. No brain. But a perfect little body. And a strong heart. He went on to explain that this was “just a fluke.” My MTHFR mutation did not play a role, he said. I was already taking a high dose of folic acid, which was actually more than he would have recommended for someone like me, who had already had a successful pregnancy and healthy baby. I did everything right. And we still got fucked.

Though we were expecting bad news, I broke down again. It didn’t matter that I barely heard what the doctor said about our options going forward. I already knew. Our options were: 1) Terminate the pregnancy through induction or D&E. 2) Carry on with the pregnancy, and maybe she would pass away at some point before full term, or maybe we would make it to full term, but she wasn’t going to survive longer than a few hours.

Not such great options.

But I knew right away that I simply could not continue with the pregnancy. For some, it’s the right choice to carry to term. But not for me. Not for my family.

We chose termination through D&E, for which we would have to go out of state. A nurse put us in touch with Planned Parenthood, and we made an appointment for next week. It would mean two days and two nights away from home, away from our toddler. But it would also mean closure.

Friday, September 16

Today I’m feeling… Conflicted. I’m at peace with my decision, but I’m still torn between wanting my baby and wanting to no longer be pregnant. When you’re talking about a child who has already been born, you obviously want as much time with them as possible, right? But when you’re pregnant with a baby you know will not survive, it’s difficult to imagine how you can go on with the pregnancy with that knowledge. How do you go on with life? How do you go to work? How do you get up every day, shower, do chores? How do you look at your growing belly and not break down? How do you cope with all the terrible side effects that pregnancy brings, knowing that it’s all for nothing? Not to mention, what do you say to other people about your baby? People assume that a visibly pregnant woman is planning to bring that baby home. Or, at the very least, to expect to give birth to a live baby. They engage her in small talk about due dates and names and daycare options. What does she say to those people? How does she tell them she’s just waiting for her baby to die?

I feel horrible about it, but all I can think about is moving on, packing up my maternity clothes, boxing up the ultrasound images and few things that I purchased for the baby, and unsubscribing from all those pregnancy emails. Is there something wrong with me that I don’t want as much time as possible with her? That I don’t want to feel her moving? I’ve read so many stories about women who chose to carry to term, about how they “had beautiful moments” with their babies before they passed away. And all I can imagine are months of heartache and torture, followed by a painful (and maybe risky) labor and delivery. Only to have to say goodbye anyway.

So, one week from today we will be saying goodbye to our baby girl. I don’t know what happens after that.

When Is an Embryo a Fetus?

According to North Dakota law, an embryo is always a fetus. Science be damned, I guess.

As it turns out, it’s illegal for my husband and I, as residents of North Dakota, to donate our embryos for stem cell research. Specifically, it’s a Class C felony. This shouldn’t surprise me, as our lawmakers passed the most restrictive abortion law in the nation a few years ago. (It was ultimately struck down by a federal appeals court as unconstitutional.)

So, now we’re left with two options for our remaining embryos: Discard, or donate to another couple. I wonder, however, if it’s illegal to donate them for research, can it be legal to have them destroyed? I guess I’ll find out.

Edited for clarification: We haven’t decided to destroy them, but given what I learned today, I’m curious if that’s even an option anymore.

Embryo Decision

Disclaimer and sensitive topic warning: I realize that to some, we are in a privileged position of having more embryos than we can use. Part of me hesitated to post about this, but it’s a tough decision, and I need to talk about it to work through it, come to a decision, and be confident in that decision. I’m not soliciting advice, though if you’ve been in this position, I would welcome you sharing your perspective on how you made the decisions you made.

We received a letter from the long-term embryo storage facility that my clinic uses that our two remaining embryos were recently transferred back to the facility, and that our annual storage fee would be due soon. Always mindful of wasteful spending, my initial thought was, “Do we need to store them?” We already decided that we weren’t going to use them. If this pregnancy works out, we’re done building our family. If it doesn’t, we don’t have it in us to start over again. Basically, I started to push us into making a decision about what to do with them NOW, before the fee is due.

I called the facility to inquire about our options. As expected, they are:

  • Dispose
  • Donate anonymously to another hopeful parent
  • Donate to research

I always thought I would lean more toward the donate to another parent option, but the more I think about it, the more unsettled I feel. I know I would always wonder if it worked, and even though I would not think of that child as “our” child, the thought of the possibility of our biological offspring out there somewhere…. I don’t know. I think I would be overly preoccupied with the idea.

After speaking with the storage facility, the donation route is rather involved. My husband and I would have to have physicals and blood work, complete a 3-generation medical history, and have a phone session with a social worker. All told, a 3-6 month process, and I’m not so sure we would even “pass,” since I know nothing about my grandparents and their medical histories. Plus, both of our families have a history of mental illness. I understand the necessity of all of that, but my gut reaction is that I don’t want to go through all of it. Then again, it could make someone’s dreams come true. I know there’s a chance the embryos may not even survive the thawing process for transfer, or they may not implant, or the ultimate result may be miscarriage. But at least they would have a chance.

Donating to research is an easier process. It’s the option I’m most comfortable with at the moment. I understand that ultimately the embryos would be destroyed, but hopefully they would first contribute to furthering stem cell research.

The only thing I’m sure of is that I don’t want them to be disposed of before they have a chance to make some kind of contribution to the world. Is that crazy? I don’t think it is, considering what we went through to make them. The emotional and financial toll…. They should be put to some kind of use.

Of course, we don’t have to decide anything right now. Sure, we could save a few bucks, but, honestly, the storage fee isn’t significant. It’s a drop in the bucket compared to what we shelled out for IVF and FET. Not to mention, it’s a small price to pay to ensure that we have the time to make the right decision for us. In theory, we could pay to keep them stored pretty much indefinitely, if we wanted to.

“How NOT to Be an Asshole to an Adoptee: The Rio Olympics Edition”

This blog is almost exclusively about me and my family building journey through infertility and IVF. However, my brilliant and hilarious internet friend Jenny wrote this amazing post about the importance of the language we use when talking about families created through adoption.

Here’s a little preview:

Without further ado, today’s post-coffee lesson on how NOT to be an asshole to an adoptee, and more specifically, why the statements made by Al Twatwig were so wrong.

BECAUSE THOSE ARE HER REAL PARENTS YOU INSUFFERABLE ASSHAT.

Sorry. Rough beginning. Let me start over.

The person, two people, three people, or whatever the hell Timon and Pumba were, that raise you? Those are parents.

That is not a fluffy concept meant to make adoptees feel better, or to be stitched ever-so-lovingly into a decorative pillow.

The people that raise you are your parents.  I am 34 years old, and in my lifetime I have been made painfully aware that this is a difficult concept for a lot of people to grasp. I have been asked, hundreds of times in hundreds of ways, by perfectly well meaning people, questions like:

Read more on Dear Moof. Enjoy!

 

 

Money Can’t Buy Happiness….

…. But it CAN lessen one’s burden, and less stress leaves more room for happiness.

This weekend was weird. My sister got a call from our aunt, the sister of our estranged father who passed away years ago. His father (our grandfather, obviously) passed away a few months ago, and since our father was also deceased, my sisters and I were to be the recipients of my father’s portion of the estate.

Our family is not wealthy, so I wasn’t expecting much. Maybe a couple hundred dollars or so. But, my aunt insisted on giving us our checks in person, rather than sending them through the mail, so we agreed to meet her. Seeing anyone from my father’s side of the family is always stressful. There’s just not a lot of love there, rather lots of resentment, and you can feel it. It was a stressful encounter, but afterwards we shopped then ate sushi, so that made up for it.

Anyway, my sisters and I were shocked when we saw the figures on our checks. It’s not a life-changing windfall, but it’s enough to pay for our FET cycle, plus medications. We had put most of it on a credit card, which we can now pay off in full, with funds to spare for our savings account.

It’s a huge weight off of our shoulders. We were managing just fine, but I was beginning to get really stressed out thinking about my maternity leave and how much of it will likely be unpaid, followed immediately by a doubling of our daycare bill. (In fact, we’ll likely have to start paying for a spot long before we actually need it, just to ensure we will have a spot at all.) Being able to clear out our credit card debt (we still have plenty of other debt, like student loans, car payment, and a mortgage) is a huge relief.

Feeling incredibly grateful.

whoever-said-money-cant-buy-happiness-has-never-had-to-pay-for-ivf--decb8

Seeing Pink, Again!

12 weeks

I really thought we were having a boy this time! But I’ve never been so excited to be wrong.

It feels strange to know this early. I realize some people know even earlier, if they tested the embryos before transfer. We found out early with C, too, but that was around 16 weeks. I’m not even in the second trimester yet. Almost, but not quite. If I believed in jinxes….

More importantly, the Panorama test result was low risk for Down syndrome, Trisomy 18, and Trisomy 13.

I feel like I can breathe a little easier knowing this information. I would feel even better if I could pick up the heart beat on my Doppler at home, but I haven’t had much luck. I heard it once last week, and I’ve tried twice more since then with no luck. I know it’s still early, so I’m not freaking out.

I met with my doula today, just informally. She was excited that I’m planning for a VBAC and thinks I’m a great candidate. (She used to be a labor and delivery nurse, so she knows a few things.) She’s also excited that I want to use Hypnobabies to help manage the pain. She had another client use the same program recently, and said it worked wonderfully. That makes me feel good!

For now, I’m focusing on names, and staying calm and relaxed.

10+ Weeks

Today has been emotionally exhausting. Leading up to my first OB visit this morning, I was actually doing just fine. Slightly anxious, but nothing to write home about. Then I got to the OB’s office. I was the only one in the waiting room for about 2 minutes. After that came the parade of heavily pregnant women. One after another, until there were 8 other very pregnant women in the room with me less than 5 minutes after I arrived. You’d think it wouldn’t bother me much, being pregnant myself. But that’s when the anxiety started to set in.

Once in the exam room, my anxiety just kept increasing. I was annoyed by the nurse’s questions about my history and current medications. (I know they have to do it every time, but when you visit the doctor frequently, it becomes tedious.) She kept saying, “Since you’re only 9 weeks…” and I kept correcting her, “No, I’m 10 weeks 3 days.” She kept saying, “Well, we have to go by the last ultrasound,” to which I replied, “My last ultrasound was only off by a couple days, so I’m still at least 10 weeks.” She insisted, “Well, that doesn’t change the fact that the doctor probably won’t even attempt to listen with the Doppler, since you’re SO early.” I realize she was trying to manage my expectations, but in some ways she just made it worse. (Oh, and the way she kept focusing on my last menstrual period, like she couldn’t get her mind around the fact that I didn’t get a fucking period before I started my FET cycle, because, hello, I’m infertile! Drove me mad.)

After the nurse left the room, and I waited for the OB to come in, I burst into tears. I tried to stay calm, but couldn’t. I kept remembering my first pregnancy, where the doctor couldn’t hear the heart beat at that first prenatal visit, and the ultrasound confirmed a blighted ovum. Even though I saw a healthy, growing baby 10 days ago, I still feared the worst this morning. Thankfully, my OB was very understanding. She tried the Doppler for about a minute, then wheeled in the ultrasound machine. It wasn’t the greatest image, but we saw the baby dancing around and heard the heart beating. That was all I needed!

We discussed VBAC, and she stressed that I was an excellent candidate, since the reason for my Cesarean was breech presentation. She raved about my doula when I told her who I planned to hire. I knew I made the right choice! (I should note here, this OB is different from the one I saw with my last pregnancy. This new OB was actually the on-call doctor who delivered my daughter 2 years ago when I went into labor before my scheduled Cesarean. I don’t dislike my previous OB, I just knew there was probably a better fit with someone else.) She officially took me off all progesterone and estrogen. (YAY!) I will continue the baby aspirin until a few weeks before my due date.

So…. Even though my mind is at ease right now, I still feel blah after all the crying from this morning. You know how it is, the crying hangover: exhausted, emotionally spent, a slight headache. From now on, I need to focus on more self care. I have the Circle+Bloom meditations already, I just need to download them to my phone and make time to listen each day.