Five Years Ago…

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September is a hard month for me.

Five years ago, I was pregnant for the first time. I remember that I found out on a Friday, the day we were having a social at a wine bar. I tested early in the morning, while G. was still asleep, and I woke him up with happy tears.

I thought the worst thing that could happen at that point was a miscarriage.

I wish I could go back to that innocence.

A friend recently posted on social media that she was struggling with the idea of never having children. She is not a candidate for IUI, isn’t a big fan of state adoption (at this point), and her sister, who at one point had offered to be a surrogate for her, is going through her own grief right now.

Talking to her just reminded me of how desperate and angry I was/am.

I’ll have to come back to this. Time for dinner here!

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14 months…

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That’s how old my twins are! Really! So, my last post left you hanging. I’m sorry. Yes, Baby B is missing his corpus callosum and has something called polymicrogyria. I’m not sure if my posts reflected it, but I was certain the pregnancy was going to end horribly, one way or another.

As I mentioned, because of the current laws in Texas at the time (which SCOTUS just recently deemed unconstitutional!) made it impossible for me to wait for prenatal testing results to make a decision in Texas, we decided that if we got a horrible results, we’d go to Colorado. We were able to figure out that there is a WIDE range of outcomes for ACC, and we couldn’t make a decision without knowing more about where Baby B would likely land.

How ironic is it that Colorado’s lax abortion laws saved my son?

We had another MRI around 32 weeks, but we talked with specialists in abnormal pediatric neurology who told us that based on the MRI’s, ultrasounds, and genetic testing, there would be an 80% chance that we wouldn’t be able to tell which twin had the ACC, that he would be completely normal. The worst case situation would (probably) be seizures, learning delays, low muscle tone, and social awkwardness around puberty. Nothing like the worst case scenario(s) we had read about.

Thank you, Colorado. Thank you for giving us the time to get test results back. Thank you for giving us the time to talk to the experts rather than jump blindly off of personal anecdotes off the internet. Thank you for giving us the time that Texas didn’t think we needed or deserved.

I ended up being miserable for most of my pregnancy. Between HG and carrying twins and worrying about Baby B on top of typical pregnancy worries, I didn’t enjoy pregnancy as much as I wanted to. Near the end, I just lounged on the sofa wallowing in hormones.

I had worries with my boss, as well. I felt pressure to come back in August NO MATTER WHAT. While that was originally my plan, I had no idea what to expect with Baby B (what would I do if he had to spend time in NICU?) and ended up stressing about threats to my job. As in, if you don’t come back to work in August, we’ll have to hire a replacement for you. Turns out, as everyone else except my boss knew, that was illegal thanks to FMLA, but it didn’t help my stress level.

I also had a hard time delivering a placenta and almost had to have an emergency hysterectomy. I lost a huge amount of blood, and to have multiple blood transfusions, and had a really hard time breastfeeding as a result. My boss gave me a really hard time about pumping at work, as well. To the point that I could have filed a complaint.

The good news is that both babies are doing REALLY well. Like they are both meeting or beating milestones. Baby B is in Early Childhood Intervention, but he requires no services at this point. He’s as strong as an ox, he walks, crawls, babbles, can say words, and gives the best kisses. He eats well (he LOVES his food) and has a good time playing in the bathtub. He does whine a lot, but that’s easily overlooked because of how stinkin’ cute he is.

I don’t really have much time to blog these days, but I really have a lot to say. Typos, grammatical errors and everything.

I have diapers to put in the dryer and bedtime to get ready for.

But I have babies. I have two healthy, happy babies.

I am still missing a part of my heart, and I will forever miss my daughter, but I am confident knowing that I made the right decision for her.

 

Protective

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Even with everything that we are going through, I’m still fiercely protective of other mothers who are faced with the decision to terminate. Whenever I see a poor prenatal diagnosis thread on my message board, I lurk, send private messages, and share my story. I send her to the TFMR board and bump pertinent threads. If they make a public post on our Birth Board about terminating, I’ll go back and stalk it to make sure no one leaves a crass or horrific response.

I’ve found a few, but they were mainly people comments about how God won’t give you more than you can handle and religious comfort. I responded back (nicely, too! can you believe it!), that while those platitudes may help YOU, it sounds condescending when you tell another person that.

It’s a little scary to open up and comment on the Normal Board – to admit to these pregnant women that I tx’d two years ago. But I feel that if I can perhaps help one person, to at least guide her to the TFMR board, then it’s worth it.

You Didn’t Think I’d Be Back, Did You?

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I know. Here I am, 20 weeks pregnant with twins, and posting on my grief blog. You might think it’s because today marks the anniversary of my spina bifida PPD, but it’s not. I’m back.

Honestly, I don’t know if I am *back* or not, but we did get another poor prenatal dx. I don’t know all the details, but there is a brain anomaly with one of the babies. It would be nothing, or could be serious, or it could even be fatal.

So far, we know nothing. No details. I had an amnio on Monday and have an MRI and meeting with a pediatric neurologist on January 2nd. Does that date ring a bell for any of you? It’s the date we started the termination for Baby M.

And people tell me not to be superstitious.

I’m hoping I get the FISH results today, but as I well know, the holidays are a bad time for getting medical advice.

I was frantic on Monday because I was 19w3d. Texas has the 20 week cut off. BUT, it’s measured by conception date, not by LMP, or something like that. All I know is that if we were going to terminate in Texas, we would have to start the procedure on Monday.We’re not ready for that.

I have to wait for the answers (at least, what answers we’ll be able to get prenatally) before I can make a decision that big again. My genetic counselor is putting phone calls in to an out-of-state clinic to ask the rules and regulations for selective reduction in the case it comes down to that, but at this point, we are still hoping for good news: that we will be on the minor end of the spectrum.

I’ve been talking to people online about the dx and how it affects THEIR kids, but really, I don’t want to know that – I want to know how it will affect MY SON. And no one can answer that until after he’s born and we start to see how he meets or misses his milestones, how he interacts with other people. We should get a clear view when he starts school.

If this were the only bump in the road that we had encountered in the last 3 years year, I think I’d be able to be more positive about it. But people don’t get it. Sure, we could end up on the easy side of the spectrum, but historically, we need to look at the worst case scenario.

Some people seem to be hoping for a false positive, and while I secretly dream about that, it’s not realistic. My anatomy scan (NOT A GENDER SCAN for all those assholes out there who have no idea how traumatic an anatomy scan can be) was done in 3D at the MFM’s office. Baby A’s CC was clearly formed. Baby B’s was not there. You can’t blame it on the machinery – it’s not like this was some shitty 2D stuff at the OB’s office. I just think I’d be setting myself up for more disappointment if I really allowed myself to think that there might be a false positive. Besides, I’ll know soon enough anyway.

I just wanted healthy. Why is that too much to ask for? Why is it the things that other people take for granted are the very things that my husband and I have to fight for? How much more can our relationship take? How can we afford another medically fragile individual in the house? How would we be able to meet our daughter’s needs if our son ended up being on the bad end of the spectrum? How could I love with the guilt that I allowed him to suffer? I just want him to be happy and healthy.

I thought spina bifida was a grey area. I had no idea.

So Here Goes Nothing…

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Again, most updates will be on my other (more positive) webpage, but I did want to let my readers know that the third time was a charm. I’m pregnant with IVF twins!

I’m currently 16 weeks and ANXIOUSLY awaiting my 20 week anatomy scan, but so far, it looks like things are going well.

The past few months have been very stressful for me, so I’ve been keeping my pro-choice activism on the down low, but I’ve still been sharing my story in meaningful ways.

I participated in an interview with Sea Change about abortion storytellers.

I have been vocal about my decision on my birth boards.

I’ve helped people with poor pre-natal dx’s find the TFMR board.

I had to cut back with the amount of time I was volunteering with the Wendy Davis campaign because I was bed rest for about 5 weeks, but I still managed to vote.

I don’t plan on this webpage going away – this is an issue that I feel very strongly about, and I still have triggers that set me off.

I still fight hard for my friends who are still struggling regardless of whether they are still TTC or not. I plan on fighting any Personhood laws that get introduced in Texas.

And I still want to make a trip to Austin to speak with Hegar, Duell, and Nelson specifically. I’m heartbroken and disgusted that Abbott/Patrick won their office. I’ve mentioned specifically before how horrible it feels to spill your guts and more intimate moments to strangers only to have them spit on you.It’s getting harder and harder to have any love or respect for where I live. I hate feeling so… jaded, but it’s the truth.

I think I’m starting to ramble now, but I just wanted to thank you guys for the positive thoughts and love that you’ve sent my way while I’ve been TTC on this blog for the past two years. ❤

A Secret IVF Stim Cycle

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This was originally written in July. I’ve kept it hidden since then.

After our second failed stim cycle attempt, I was done. I was really depressed for a few weeks – I’m not sure if I blogged about it or not, but the finality of ending TTC reminded me of the finality of the tx when we lost our daughter. I was a mess.

And then…

We decided to give it one more shot. One more chance. Any why not? My insurance gets renewed on September 1st, and I have 0 co-pays on my meds right now, so if we were evening THINKING about giving this another shot, it’s now.

So. We jumped.

I’m on a Lupron Flare cycle. For me, that means I have been taking two shots of Lupron every day since CD 3. On CD 5, I added 300 Gonal-f in the morning and added the omnitrope and 300 menopur in the evening. Yep. That’s five shots day. My belly is really unhappy.

I can also confirm that the Gonal-f leaves a horrible nasty taste in my mouth. Yuck! Also, I don’t know what I’m doing wrong, but icing doesn’t seem to help a thing this time around.

We decided to keep this secret from everyone because I got tired of disappointing people. Also, it’s hard to have privacy in the IVF world, especially while I’m working.

Quick Update

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All is well here. Really and truly. Just really busy working a full time job, working an extra two nights a week, and volunteering for Wendy Davis.

I have tried to stay away from social media since Wendy David announced that she experienced a TFMR. It’s just too triggery right now. I bought her book, but haven’t read it yet.

I participated in a survey how organizations can help better support women who go public with their abortion stories. They actually called me so I gave them a more detailed phone interview.

We found out that DH is a carrier for Tay Sachs, but I confirmed that I’m *not* a carrier. He’s been doing okay, just dealing with management of his condition.

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I promise a more in depth update soon, but I’m going to make breakfast!