Five Years Ago…

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!

14 months…

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

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?

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…

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

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

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.

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

Thoughts on Karma

When I was younger, I had a friend who was in the process of going through a divorce and thought her husband was seeing another woman. I asked her how she was coping, and she proclaimed that she would be okay and that he would get his on Judgement Day. I remember being shocked that that sort of mentality kept her passive and submissive – he eventually came back to her (after she had weight loss surgery) and they are together still.

I think karma sounds benign enough when someone cuts you off and you think that they are going to get pulled over three blocks down, or when you give your spare change to the coffee can for March of Dimes at the cash register. But it’s really not a nice thing.

I went over to my ex-husband’s house on Friday to pick up something he had borrowed from me. I haven’t been alone with him since I first left him, so he had always been polite and normal. He has a weird sense of humor, but it was nothing inappropriate. We have a lot of mutual friends, and it got really awkward for me when I wasn’t “friends” with him in social media and because he had never done anything overtly horrible, I just sucked it up. It’s not like I share that much on FB anyway. Maybe he just wanted to stalk whoever I was dating at the time. I don’t really know. In any case, he knows about my husband’s illness.

So I listened for an hour and half as he updated me on the craziness in his life – he has become the surrogate father of a drug addict’s baby and they recently broke up again, complete with appearances from cops, violence, and a requested Amber Alert. And I forgot to mention the creepy sexual stories he told me, but I don’t think this blog is the place for that. And after he told me all about this, he asked me about DH. And so I told him that things were okay for now, but that we think his autonomic nervous system is failing. I didn’t go into too many details, but I did mention the most recent one: the fact that he is having trouble eating.

And then he said it.

Now before I tell you what he said, I need to insert a little background information. Year ago, when we were married, he had a double hernia operation. Even before he had the surgery, we had a tumultuous relationship. I was deeply unhappy. He was not a nice person to be around. He yelled, screamed, belittled me, and always had to be the center of attention. He said that I was rude and selfish and always had a knack of turning any concern that I had about him into a negative quality about me. This just got worse when he had his surgery. It just magnified the kind of person that he was. I’m sure that I wasn’t the best, either. I was stuck taking care of this old man who I was not meeting my needs. I took him to meet my family and I found that I was embarrassed by him. It was everything: his age, his weight, his overbearing personality, how he treated me in front of people. how he treated my parents – just everything.

So i dealt with him the same way I deal with everything – I put my feelings down on paper. I never had any intention of him reading my journal – it was my diary! I had written in it for years, so it’s not like he didn’t know what it was. One day, he found my ranting about him. I’m sure it was over the top. When you aren’t allowed to express yourself, you voraciously unload when given the opportunity. So while all of my complaints were most assuredly justified, I’m sure that my word choice was particularly cruel. I think at one point I said that I found him disgusting. It wasn’t just his recovery that upset me – it was his helplessness. Even when DH was in the ICU paralyzed, he wasn’t as helpless as R. DH never expected me to do anything for him – he appreciated everything I did and never took me for granted. R? Not so much. He wanted an employee to boss around, not a wife.

We got into a fight one day, and I left. I usually always left after a fight because he would follow me around the house, goading me and baiting me further. So usually I would get in my car, drive to Walgreens parking lot, and cry. Not really mature, but it’s what I did.

While I was gone, he read my diary. He was horrified that I wrote those mean things. (Note: I did go through all of my old things looking for that diary, but I can’t find it anywhere. He may still have it. He is the kind of person that would keep that sort of thing). When I got back home, he demanded an apology. From me. He didn’t think he did anything wrong – he claimed that he read my diary because I left it on the bed (doubt it) and that he thought I left it there for him. Uh, whatever.

So, with all that in mind, he asked me about my husband. I told him. And then he kinda laughed and asked if he could tell me something kinda mean. Uh, okay, I guess. I mean, I figured that a 50 year old man can determine whether or not something is appropriate to say out loud. So then he said, “You remember when I had my surgery and you wrote those nasty, horrible, mean things about me? Well, I think it’s karma that this happened to your DH.”

Karma? KARMA? How about it’s karma that your druggie “friend” cuckolded you into taking care of her and her kid for the past two years and now she’s left? How about it wasn’t your illness that disgusted me, it was YOU?

Karma? So you you think that’s why I had a sick daughter, too?

As weird and uncomfortable as last Friday was, I’m so glad it happened as a reminder to me that you are not a nice person, regardless of what you present to people. There’s a part of me that thinks you pursued this girl because no one is going to believe her – she’s a crazy druggie. You are an upstanding citizen (at least you play one on Facebook) who is generous and selfless and all that crap. Whatever.

Schadenfreude.

My Reaction to Fertility Meds

Gonal-f: Nasty tasting. I know it’s an injection, but I can taste it. Yuck.
Menopur: This stings by itself. If mixed with Gonal-f, it doesn’t sting as bad. The more I took, the stingier it got.
Omnitrope: Easy to take, a pain in the ass to mix.
Lupron: Gives me headaches.
Cetrotide: Easy.
Ovidrel: Easy.
Bravelle: I have no recollection of my reaction to this shot.

Clomid: Tastes nasty and gave me hot flashes.

PTSD Freakout?

I know I’ve mentioned that I’ve self-diagnosed with ptsd, and while I had been doing better, I had a small episode today.

DH has not been feeling well lately. He came home early last night and stayed home from work today. Around 1:30 or 2, I go in to check on him and touch his leg to gently wake him up.

There was no movement from him. None. And he’s a light sleeper.

I touched him again and noticed his leg was cold. I couldn’t hear him breathing.
And I lost it. I panicked and shook him pretty hard and he finally gasped and confirmed that he was alive.

I sobbed “Don’t do that to me again!” and started bawling.

I’m sure that’s just the way he wanted to wake up.

I think the reaction was triggered by a combination of bad news, hormones, and worry about DH.

Bah.