special needs.

My Facebook friends are always commenting on how perfect my  husband is. It's true; if we're FB friends and you are not in the loop on the most intimate details of my life, you probably think I have this totally too-good-to-be-true marriage. It's not exactly fake, either. Mr. Hope is one of the sweetest, most loving people I know. He genuinely adores me. I love him more deeply than I have ever loved anyone ever. We really do have as much fun together as it seems.

So definitely not fake. More like...edited. 

What I don't ever talk about on Facebook (nor will I ever) is the mental illness that almost destroyed us.

Mr. Hope has bipolar disorder. Technically, it's bipolar disorder with psychotic features, but I tend to leave that last part off since the psychosis has been in check for years. But it's there. He takes a small dose of a scary little pill every night that keeps the olfactory and auditory hallucinations away. He takes a lot of medicine to keep his brain functioning in a way that's conducive to so-called normal life.

Today, I consider us lucky. Mr. Hope is so "normal" now that sometimes I forget he even has this disorder. He's been working steadily for more than two years and just got a new position at his company that came with a nearly 50% pay increase. He went from twice-weekly therapy sessions to one every other week. When bad things happen, he is better equipped to handle them. I am confident that he's going to be a great dad to Jellybean.

But if you'd asked me even four years ago, I would've had a very different take on our relationship. 

The quick and dirty version is this: when Mr. Hope and I got together I soon realized he was a binge drinker. Not every day, mind you. But, like, out of the blue he'd get blackout drunk. Sometimes he'd be verbally abusive. There was an incident that pushed me over the edge about six months in. I told him to get sober or get gone. 

He chose sober, and has been sober ever since.

The bipolar was diagnosed in the wake of this. The drinking was a way to self-medicate the mania. This is common in mental illness. Not just drinking but dependence on any substance.

Mr. Hope also has ADHD. It's pretty bad. His psychiatrist tried him on a non-habit-forming ADHD med. Things got better...until they got worse. Here's the fun thing: symptoms of ADHD and symptoms of mania look an awful lot alike. So as the shrink upped the ADHD medicine, the symptoms got worse. More medicine. More symptoms.

Eventually, the medicine broke his brain.

That marked the first time Mr. Hope logged time in a mental hospital, but not the last. After he recovered from that episode and returned to work, the shrink put him back on the same ADHD medicine. Once again, it broke his brain - only this time, it did it a lot quicker. And also a lot worse.

More hospitalizations. More leaves from work. In a three-year stretch, Mr. Hope only logged about 8 months on the job. He was actually on SSI for a couple of years. Fortunately, his company has really good short- and long-term disability. He never lost his benefits. In fact, he never went below 50% of his salary.

Taking an extended leave from work gave us a lot of time to find the right med combo. This took more than a year. No joke. When we eventually went for a consult at a world-renowned hospital, the doctors we met with said they'd never seen anyone on as many medications as Mr. Hope and still be functional. They dried him out and started fresh, and that's what got us where we are today.

When Mr. Hope returned to work, we weren't sure he was going to make it. But he did. Not only that, he excelled. He got picked for training jobs. He got assigned to special task forces. He was accepted into a prestigious leadership development program. And just this week, he was hired into the new position, jumping up two job grades in the process. 

I honestly could not be more proud.

Why am I telling you all of this? This is a blog about infertility, not mental illness, right? 

Because I wasn't entirely honest in yesterday's post. I wrote something about being afraid of the test not telling me that our kid had a damaged heart. But what I'm really afraid of - the thing I've always been afraid of - is having a kid with special needs. Not your garden variety special needs, but like the kind that keeps your kid a kid forever, even when they're 40. 

This makes me a horrible person, I know. Before anyone else says it, let me: YOU SHOULDN'T HAVE TRIED TO MAKE A BABY IF YOU WEREN'T OKAY WITH A BABY THAT NEEDED MORE LOVE AND CARE. Okay, fine. I'm awful. I'm the worst. Nothing you say can make me hate myself more than I already do.

But I know what I can handle. I know what I am capable of. I have glossed over Mr. Hope's breakdowns here but let me be clear: those were some of the worst days of my life. They were scary and dark and nearly broke me. Bouncing back - putting not only his brain back together but also our relationship - took years of hard work on both our parts. And there were times I thought we'd never get to where we are today.

This is one of the reasons I've always been more in favor of having one child, not two. If I have one and Mr. Hope's meds stop working, or if something triggers another break, I'll be okay. I can handle being a single mom of one while he is in the hospital. I can handle taking care of one kid by myself while he is healing. But two? Two seems like it might be too much. Throw in a child that requires an extreme level of care? I don't know that I could do it.

But what about autism? you ask. They can't see that on a test. This is true. We could have a kid that requires a high level of care that no diagnostic test would ever pick up. It's a gamble. I get it.

It's a gamble we were willing to take.

Anyway, there it is. The whole truth and nothing but the truth. Skewer me if you desire, but like I said: I have enough self-loathing for all of us. 

the plight of the preggo in the one-bathroom house.

Mini-Hope is visiting for the weekend. She inherited her father's sensitivity to wheat and/or gluten, but refuses to give up refined flour. So, of course, she woke up with an upset tummy (mac-n-cheese does that to the wheat and/or gluten insensitive) and immediately took up residence in our small ranch house's one tiny bathroom.

You can probably guess what happens next.

When I wake up in the morning, I make a beeline for the bathroom. I did this even before I was pregnant, but now that I am with child, my bladder is even more sensitive. I HAVE TO PEE, DAMN IT.

Only, I can't, because there's Mini-Hope.

I go back into the bedroom and say to Mr. Hope, "You're going to have to build me another bathroom."

He asks if I knocked on the door to let Mini-Hope know I have to use the bathroom, too. I didn't, because she embarrasses easily. But five minutes later, I can't afford to spare her feelings. I knock and say, "Hey, Mini-Hope. You almost done in there?"

"No," is her plaintive, 10-year-old response.

Balls.

I say, "Okay, but remember - we only have the one bathroom, and I need to go, too."

She doesn't respond. I putter around the house. Feed Precious Pup. Put away some things in the kitchen. Try to forget that my bladder is a ginormous balloon about to pop.

I go back into our bedroom. "So about that second bathroom...."

And then we hear it. The glorious flush of the toilet.

When Mini-Hope emerges, she's clutching her stomach. "You feeling okay?" I ask.

"No," she tells me. "My stomach really hurts."

So I don't go into the bathroom. I go into the kitchen to get her a small glass of ginger ale.

Which is when Mr. Hope takes it upon himself to use my bathroom and take the world's longest pee.

When he emerges, I duck in...only to discover the roll of TP is almost used up. I go to the linen closet. No extra rolls of TP.

"Hope!" I say. "There's no toilet paper! Go be a husband and GET ME SOME."

He does.

At which point I'm finally allowed to relieve myself - literally twenty minutes after first waking up.

Did I mention that I really, really, really need a second bathroom?

plodding along.

I should have written this update Monday, after I got back from seeing Smiles. I know there are a few lovely people who've been following my story and I honestly didn't mean to worry anyone by not reporting back. I am very sorry. 

Here's what's been going on:

Went back to Posh Clinic on Monday. They took me back for blood work while Mr. Hope was still parking the car. I see a piece of paper on the top of my file with an hCG number. It was in the 67k range. I don't  know if this was from Wednesday or Friday, as I had blood draws at the satellite clinic both days. But I do know the number is low, especially since the previous Monday it had been in the 56k range. Immediately feel sick to my stomach.

In the waiting room, start running numbers through a doubling calculator on my phone. I know at this stage that it's normal for it to take up to three and a half days to double. If the 67k draw was on Wednesday, it had a doubling time of seven and a half days. If on Friday, fifteen days. Neither one looks good.

I look at hCG ranges by week. I'm still in a great range, number-wise. Even my chart had a "HIGH" flag on it. But I'm less concerned with the overall number than I am doubling time. I know this is because my numbers never doubled properly with the last pregnancy - that it's now an anxiety trigger for me. I figure I will ask Smiles about it when I see him.

We go back for the u/s. As I'm pulling down my pants I tell Mr. Hope that I have a bad feeling. He asks me why. I tell him I don't know; I just do. He gives me sad face. My heart is racing. I'm sure it's over. I am "sure" it's over before every u/s, but this time I'm really sure.

K, our favorite u/s tech, gets right down to it. Within seconds, we see Jellybean's heartbeat. I blurt out, "OH THANK GOD," and Mr. Hope squeezes my hand. I start asking questions. "Give me a minute," she says, not unkindly. 

Heart rate is 137. I panic for a second before she assures me this is a great number for where we're at. The crown-rump length is 10 mm, only one off from where they'd predicted last Monday. These are all good things.

The bleed has gotten slightly bigger and changed shape. It's no longer a pencil eraser but a long, skinny banana. Like a crescent, or the back end of parentheses. K tells us that it's in a good place for a bleed, behind the baby and not on top of it. This is reassuring.

We don't wait long to see Dr. Smiles. I am still a ball of nerves. When I walk into his office I say, "You know I'm about to lose my shit, right? You know this is happening." (Have I mentioned how much I love my doctor?)

He goes over my meds with me and decides to discontinue the lovenox (blood thinner) to see if it will help. Then he tells me that I'm still on bed rest.

I say, "Can we talk about this for a second? What are the advantages of full bed rest over modified?"

"None," he says. 

Um, okay.

He tells me that he's sure I've Googled enough to know that bed rest can't prevent a miscarriage, but to him, resting when there's a bleed seems intuitive. I ask about sitting with my feet up so I can work. He didn't realize that I can work from home, and when he does, he says, "If you're telling me all you're doing is moving from the couch to a chair with bathroom breaks, I'm fine with that." No standing too long, no cooking, no lifting, no walking the dog, no anything other than laying on the couch or sitting in a chair or using the potty.

This is an enormous relief to me, because the stress of not being able to work wasn't doing me a damned bit of good.

I ask about the hCGs and how they're not doubling any more. He tells me he doesn't care about that, because they plateau at a certain point anyway. But he didn't care about my ridiculously low hCG last time around, and we all know how that ended.

So then I say, "Be straight with me. What are the chances that this baby is going to make it?"

He chews this over for a second, then says, "Ninety-eight percent." 

"Really?" I say. "You're that confident?"

"Yes," he says. "I am."

As we leave the clinic, Mr. Hope says, "Those are really good odds." And he's right; they are. If someone told me I had a 98% chance of winning the lottery, I'd buy a ticket, no questions asked.

And yet the broken part of my brain thinks, "How can he be so sure?" and "What if I'm in the other 2%?" and "Why am I still terrified I'm going to lose this kid?"

At home I log onto my work laptop and see that I have 550+ emails backed up. This is with me checking sporadically on bed rest. We have a big event scheduled for the next day and I dive right in. Initially I think I'll work for two hours and then rest, but I don't. I work for five hours straight before feeling so exhausted that I have to lay down on the couch. 

I figure I'll update my blog in the morning. But when I wake up, the day of the event, I log on early and just never get off. I work steadily, with only a short break for a therapy appointment with Quirky and another to talk to Mr. Hope when he gets home for work, until eight o'clock. Seriously, it was 8 p.m. when I finally logged off. I got on the couch and was passing out within a couple of hours. 

So that brings us to today. Tomorrow morning, it's back to the clinic for another scan. I will say that I've had less discharge the past two days on modified bed rest than I did on the four and a half days of full bed rest. I hope this means the blood is reabsorbing or working its way out. I can handle modified bed rest, but during my session with Quirky I apparently talked without breathing for 20 minutes (I know she was thinking MANIC). I think this is because I went from working in an office where I'm in meetings with different people all day to being at home all by myself for most of the time. I think I miss interaction.

I'm starting to catch up on day job but am still behind on the freelance project. The project manager is getting antsy. She knows my history and I told her about being on bed rest but now being on modified. Her response was "Great! How far have you gotten?" Since I lost almost a full week, and went on bed rest literally the day after she asked for the last status update, the answer is NOT BLOODY FAR. But I didn't really say this. I just told her I was plodding along.

This is kind of how I feel about my life right now. I am plodding along. I get up, I do some stuff, I go to bed. Waiting for something to happen, or to not happen. Time moves slowly and quickly all at the same time.

I don't know what it will take for me to feel comfortable with this pregnancy. I felt good for two days after we saw the heartbeat and then I gushed red. So now I feel like nothing is guaranteed, it could end any second, and feeling comfortable just means setting yourself up for disappointment. It's not healthy, but it's where I am.

Tomorrow I will be eight weeks. We lost Nugget between weeks 8 and 9, but the weight week ultrasound already showed a slower heartbeat and signs of lagging growth. The gestational sac was too small, the yolk sac too big. All of my sacs are appropriately sized right now. So, maybe tomorrow. Maybe if the growth is appropriate and the heart is beating strong and there's no sign that Jellybean is going the way of the Nugget, maybe then I'll feel better?

Maybe?

moment of truth.

I was probably more nervous about this morning's FRER than I have been about almost anything so far post-transfer. In part, because Kyla at Three Quarters Full posted a picture of her FRER yesterday, when she had a beta of 679. Literally ONE point from where I need to be in order to be doubling appropriately.

Now, I know all pee sticks are different, even from the same brand. But it's kind of like when you're making a recipe - you know your dish won't turn out EXACTLY like the picture, but you want it to look pretty close.

So I dipped the FRER and right away the test line was screaming red, even before anything hit the control line. I exhaled a little. Ten minutes later, I could see that the test line was brick red, super-dark, and the control line looked smudgey, and had more of a cherry color.

I took the stick back to my desk to look at Kyla's again. It's very close. If anything, my test line might be a little darker and my control line a little lighter. Obviously I can't look at two lines on a stick and translate that into a specific beta, but I went back and looked at the pictures from last cycle. I know that my beta was 508 on 12dp5dt and 1461 at 19dp5dt. I didn't take a test at 19dp5dt last cycle, because I'd moved on to every other day, but I did take one at 18dp5dt, and it looks similar to the one I took today.

Ergo, I do not think I will get a nasty surprise at today's beta. I think I will be scheduling my first ultrasound for next week.

In other news, Precious Pup needs to go back to the vet due to a small, smooth cyst on his front right paw that he keeps chewing at. This in addition to the fun post-op stuff he's still got going on. My poor little furbaby. I just want him to be healthy and happy for a few more years. Ideally five or six. I don't mean to be greedy but this dog is my heart. This morning, I woke up with him tucked between Mr. Hope and me, and he had one paw draped over my arm, NBD. It was the cutest thing.

And remember how my car totally crapped out at Posh Clinic on Friday? The repairs were going to run us a whopping $2,000. Not cool, car. I asked about a trade-in value and the dealership offered us a decent one. We'd still owe on the loan but if I put the money I would've spent in repairs on the loan instead, it doesn't leave all that much to roll over into a new loan. It's kind of like buying a car without a down payment. Another option is a short-term lease, like a year, just to get us out of the money pit. We're going back tonight to get me into something.

I'd taken today off from work thinking it would give me time to catch up on some things, but the universe has totally conspired against me. Now I'm leaving the house at my normal time, only it's to get Mr. Hope to work so that I can have the car today. Then it's the long drive to Posh Clinic for my third (and hopefully last!) beta, then back home to pick up PP for his vet appointment. Then I've got to get PP home and might have an hour before I have to leave to go get Mr. Hope so that we can go to the accountant's together to get our taxes done. Not sure how long that's going to take, but we'll need to grab at least a snack before we go to the car dealership because they never get you out in less than 2.5 to 3 hours.

Even so, I'll try to find a few minutes later today to update after I get my beta results. They usually don't call until the afternoon, but that should be between the vet appointment and the tax appointment. Fingers crossed!