Guardian Angel

I want to tell you about Lexie's Guardian Angel. It's a cliche, I know. But hear me out.

October 21, 2007, would have been the due date for pregnancy #1, our first loss. That pregnancy only lasted a couple of weeks, but we didn't know to be scared/wary/worried. We knew only that you shouldn't tell people about a pregnancy until 12 weeks or so, once you were past the risk period. (Now, the thought of this almost makes me laugh.) Nobody knew about it except for me and Steve and a couple of close friends. I spontaneously miscarried, and the doctor termed it a chemical pregnancy. When my brother called us a week after my miscarriage to announce that his wife was pregnant, he didn't know about our loss. To this day, he doesn't know. I didn't know what to say. We hadn't announced the pregnancy, and somehow it didn't seem appropriate to say, "Hey, congratulations! We were expecting too, but then I started bleeding like crazy! Our baby would have been born two weeks before yours! Isn't that a funny coincidence? Ha ha!"

January 5th, 2008, would have been the due date for pregnancy #2, our second loss. With this one, we saw a heartbeat at 7 weeks, and the doctor smiled and said "it looks viable." But the egg had implanted way too low, and although that doesn't *always* mean things will go badly, it did for us. At the next appointment there was no heartbeat. I waited to miscarry on my own, but nothing happened. A classic "missed abortion." I had a D&C a couple of long weeks later.

I still think about the babies that weren't, especially around their due dates. My doctor said we'd just had bad luck. At the time, we didn't know about my uterine anomaly. I believed that our first miscarriage was probably just a bad egg, but the circumstances surrounding our second miscarriage were not normal, and we wanted answers. We fired that doctor and went to a specialist. After a barrage of testing, the specialist diagnosed a unicornuate uterus. He noted that most women with this condition have normal pregnancies, but a higher percentage than normal experience preterm labor.

I did my own research and became highly educated on the subject. It seemed to me that implantation in a good spot was key to making it through the first trimester; there is some evidence that the shape of a unicornuate uterus creates far fewer healthy places for implantation in the uterine wall. We'd have no control over where an egg implanted. I didn't know how many more pregnancies it would take, but we would keep trying. More importantly, though, we now knew to be hypervigilant for complications when we finally made it past the first trimester. That's where the new information would make a difference.

If we hadn't had the second miscarriage and started investigating, my pregnancy with Lexie could have had a terrible ending. I wouldn't have already signed on with a perinatology (high-risk pregnancy) practice for all my OB care. We wouldn't have known to call immediately when I started having symptoms of preterm labor. A regular OB probably would have told me to lie down and take it easy for the weekend. Instead, my perinatologist had me report immediately to the hospital, where I stayed for 9 weeks. I was 22 weeks pregnant at the time. Without prior knowledge of my condition, we would likely have lost Lexie in devastating fashion.

We couldn't save the baby who would have been due in January 2008, the baby who had no chance because of my unicornuate uterus.

But by helping to lead us to the answers we needed, that baby saved Lexie.

Update From the NICU

We've been spending a lot of time in the NICU watching over our little girl. Lexie is tiny, but amazingly there are smaller babies in the NICU with her -- much smaller.

The doctors say she is doing great and just needs to gain weight and grow. She's breathing on her own without any trouble. She has a tiny feeding tube that gives her about half her nutrition nowadays and they inch it up a little bit each day, and inch down the IV nutrition.

I'm hoping to post a birth story within a week or so, but the short version is that I started leaking amniotic fluid last Tuesday night. It was spontaneous -- I was just lying in the hospital bed as usual when it all began. Wednesday morning I was contracting regularly and most of the amniotic fluid was gone. Ultimately my doctor determined a C-section was the safest course and things started rolling pretty quickly.

The scariest part of it all was after I was sewn up and my doctor looked over the curtain and confirmed that I did indeed have a unicornuate uterus, adding: "You were lucky to get her to 30 and a half weeks. Your uterus is very small."

I can't believe I'm back home on my couch and we have a little girl sleeping and growing in the NICU. We are so lucky.

Ready, Set, Triage

It seems I spoke too soon.

On Sunday night, I went to the bathroom and noticed a small amount of unusual fluid on the TP. Placed a call to my OB answering service, and they told me to report to the hospital.

I've been there ever since, and it's going to be a while.

In triage the doctors found that I was having actual contractions (vs. Braxton Hicks) and I was admitted overnight until an appointment Monday morning with the transvaginal ultrasound, aka the hootchiecam. They found that my cervix was 1.6 cm, well below the danger threshold of 2.0 cm. Less than a week earlier my cervix had been holding steady at 3.4 cm.

So here I am. The first few days were really hard. At first I thought I might be able to go home at some point, and I felt devastated with each sign to the contrary. I could not remotely wrap my head around my fate -- I would lie here in my hospital bed thinking, "I cannot believe this is happening." Steve has been really supportive but it took a while for him to realize that I wasn't coming home, and I felt terrible to be leaving him on his own.

I kept trying to look for a silver lining, and I couldn't come up with one.

I'm feeling a little better about the situation now... I know this is the best place for me. This hospital is a great one with lots of experience in high-risk pregnancies and preemies. Whenever the contractions get too hard and fast, I get a shot of terbutaline and that calms them down for a while. The doctors will move up to a new drug regimen as each one stops working -- apparently most people desensitize to the drugs over time.

A lot of my friends have been really great, asking to come visit and bring food (thank god) but I'm not ready to see anyone yet except family. I'm hoping to get a private room in a week or so and that should make things a bit better. I'm still sad sometimes and scared about how this will all turn out. I wish I knew what was going to happen. I also selfishly wonder how long it will be before I get to go outside again.

If you know of stories like mine that turned out to have a happy ending, I'd love to hear about them -- it helps me to hear about the successes.

In the meantime I'll be here in my medical prison, trying not to worry myself sick. The first goal is viability -- that's 24 weeks, officially next Saturday. After that, every day is a victory and increases the chances of us having an ultimately healthy little girl.

Eventually, I did come up with a silver lining, feeble as it is. You know the show "Locked Up Abroad"? It tells the story of people who get arrested in third-world countries for smuggling drugs or money or whatnot. Those people typically end up living in squalor in a Mexican prison for like 4 years.

That would be much worse than this.

22 Weeks and All Is Well

As of today, the little girl sitting on my bladder is 22 weeks along. I continue to be shocked and thankful each time the doctor reports that things are looking fine. She continues to jump around so much that we haven't gotten any good ultrasound pictures. I have high hopes for the next visit, the day before Thanksgiving -- when she'll be about 24 weeks, the first reasonable point of viability.

I'm getting pretty tired of Gatorade, but I dutifully chug 20 ounces of the sport drink first thing every morning to calm down my irritable uterus. It does seem to be working -- the contractions are much less intense as long as I've had Gatorade or salty food (which makes me retain water). I'm still working but trying to take it easy. My job can be pretty intense, so taking it easy is a challenge, but I do what I can and I'm lucky that my boss is supportive on those days I need to work from home.

We still haven't bought anything for the baby. That's probably not normal, I know. But this still doesn't seem like a sure thing. We did finally start looking into daycare, which was a big step for me. When people congratulate me on my pregnancy, I try really hard to just smile and say thank you. And when they ask me when I'm due, I try to just say "March 20" instead of adding that I will probably not make it that far.

It would be a great irony if, after all this worrying, I actually made it to full term.

***

Please take some time to hop over and congratulate my UU compatriot Sara, who made it to 35 weeks with lots of complications before giving birth to the 4-pound baby Brynn on Nov. 8.

What Are the Chances?

En route to our 20-week ultrasound last week, I was nearly overwhelmed with nerves. I've mentioned before that I have tended to approach each appointment with a stoic attitude, prepared for the worst. My biggest concern this time would be that the ultrasound would show no kidneys, or some similar malformation that is not consistent with life outside the mother.

I tried to calm myself down, thinking "what are the chances of something like that happening, especially when I've already had such unlikely things happen to me?" But for anyone who's repeatedly been on the wrong side of the stats, this is less than compelling. I had two miscarriages in a row (there's a 1 in 20 chance of this happening) and then found out I had a rare uterine malformation (there's an estimated 1 in 6000 chance of this happening). I'm no stranger to the short end of the statistics.

Steve came with me to this appointment. We had to wait longer than usual in the waiting room, and I tried to remain calm while the clock ticked on. After what seemed like a long time, we were called back. The ultrasound tech started doing her thing. Once again, the little bugger was deemed "very active" and it took her a while to check all her details. Finally, she announced that everything looked normal, and I was finally able to relax.

I did confirm from the doctor that I am already having contractions. He said I have an "irritable uterus" and told me that's pretty normal for a woman with a unicornuate uterus. He told me to stay hydrated and lie down when the contractions come, and he gave me the signs to watch for that would indicate I should hightail it to the hospital. I've been chugging Gatorade ever since.

We also found the baby's sex. I'd had a strong feeling that it's a boy. Of course, I had a 50-50 chance of being right. I was shocked to find out for sure: it's a girl!

More Perspective

I had a checkup today to ensure my cervix was still behaving. (Thankfully, it was. All looks good for now.)

While I was waiting in the exam room at my high-risk OBs' office, I noticed an appointment schedule on the bulletin board. It listed women by name, and included a "notes" field. In the notes field were things like, "triplets -- wants reduction" and "blood clot in neck." Leaving aside the obvious privacy concerns, it kind of drove home for me how lucky we have been so far in this pregnancy.

Sure, we have some adversity. But things could be a lot worse.

Looking for Meaning Where There May Be None

One of the odd symptoms I had in early pregnancy was an apparent increase in the intensity with which songs would go through my head on endless repeat. Since I subscribed to XM a few years back, the variety of options for my internal jukebox has increased exponentially, but suddenly that seemed to make no difference.

I was about five weeks pregnant when I found myself struck with insomnia, while Reba McEntire's "Fancy" rolled through my head, over and over, through the wee hours of the night. In case you aren't familiar with the song, it's about a dying mother who realizes that her teenage daughter has only one way out of poverty, and it's via the proverbial Oldest Profession.

She handed me a heart shaped locket that said
To thine own self be true
And I shivered as I watched a roach crawl across
The toe of my high heel shoe
It sounded like somebody else that was talkin
Askin' "Mama what do I do?"
She said "Just be nice to the gentlemen Fancy
And they'll be nice to you"

She said "Here's your chance Fancy don't let me down
Here's your one chance Fancy don't let me down
Lord forgive me for what I do, but if you want out, well it's up to you
Don't let me down now, your mama's gonna move you uptown."

Well, that was the last time I saw my ma
The night I left that rickety shack
The welfare people came and took the baby
Mama died and I ain't been back
...
I charmed a king, congressman
And an occasional aristocrat
Then I got me a Georgia mansion
and an elegant New York townhouse flat
And I ain't done bad

A strange song to have stuck in my head, but maybe the message, if there is one, is that Fancy triumphs over adversity in the end.

A couple of weeks later, the Estelle/Kanye West song "American Boy" kicked off its rotation on my internal jukebox's endless repeat.

Take me on a trip, I'd like to go some day
Take me to New York, I'd love to see LA
I really want to come kick it with you
You'll be my American Boy.

This went on for several days. I wondered if my brain was trying to tell me something about the sex of the little bean growing inside of me. At this point, though, I remained completely unconvinced that this pregnancy had much of a chance of success. I tried to just tolerate my internal soundtrack and go about my business.

A week or so after that, as the nausea descended heavily upon me, came another unique selection. The Smiths' "The Boy With a Thorn in his Side" began playing in my head on endless loop.

If they don't believe us now,
will they ever believe us?
And when you want to live, how do you start?
Where do you go? Who do you need to know?

In addition to the clear connection to a fragile life, I noted with interest the gender-specific title, and the fact that my UU condition causes all my pains and twinges to be localized to one side of my abdomen.

A thorn in my side, indeed.

Later, as the 12-week nuchal screen for chromosomal disorders rolled around, my anxiety again neared a peak. The concern nagged at me that we'd find no heartbeat, and if it was still alive, we'd get results that indicated a high chance of abnormalities.

Around the same time, though, "One Step at a Time" by Jordin Sparks (yes, the American Idol winner -- don't judge) started up on the old internal jukebox. Desperate for some sort of philosophy to cling to, I locked onto this one.

Hurry up and wait
So close, but so far away
Everything that you've always dreamed of
Close enough for you to taste
But you just can't touch
...
Now you're feeling more and more frustrated
And you're getting all kind of impatient
Waiting
We live and we learn to take

One step at a time
There's no need to rush
It's like learning to fly
Or falling in love
It's gonna happen when it's
Supposed to happen that we
Find the reasons why
One step at a time

At the test, we saw the little bean jumping and flipping around. Steve was fascinated by the ultrasound images. We got great results from the screen. And as of yesterday we're at 16 weeks and counting.

One step at a time, right?

Thanks to metrolyrics.com for most of the lyrics, with a tweak by me here and there. ;)

Step Right Up. Take a Chance. Everyone's a Winner

Only a few posts ago, but a long time ago in blog years, I mentioned that Steve and I were headed to Emerald Isle, NC.

It was a great vacation on a beautiful island.

We hung out on the deck in our little beachfront cottage, cooked out on the old grill, ate lots of seafood, drank a few beers, and relaxed as never before.

We explored the island and visited Fort Macon. Below, Steve peruses the fort.


It was very windy all week long. I had some crazy beach hair.



Perhaps most momentous, however, was one of the last pictures we took:


I met this news with trepidation above all else. Steve was hopeful, but subdued. There was no way to know if the third time (our third pregnancy) would be the one that stuck. On the last morning of our vacation, before we headed back home, I spent some time sitting on the steps to the beach, looking at the ocean, trying to remind myself of my very small place in the world. The ocean always helps give me perspective, and I needed it, badly, after getting this news.

I was beside myself for the first few weeks, certain that each day would be the last one for this pregnancy. Even seeing the heartbeat at 6.5 weeks didn't make me feel any better -- we saw a heartbeat last time, too. I kept assuming it would be the same as before -- that is, until about 7 weeks, when the nausea hit harder than ever. That was the first real sign that this pregnancy might be different. (Because of the nausea, I had to cancel a much-anticipated business trip to Las Vegas.)

But still, for each doctor's appointment, I went in feeling stoic, bracing myself for bad news.

I'm at 15+ weeks now, and so far the news has only been good. This morning, for the first time, I entered the doctor's office without the certainty that I'd be leaving with a D&C appointment. Things are looking up, but we aren't out of the woods.

I'm considered high risk due to my unicornuate uterus, and I go to a perinatologist every two weeks now for a checkup to ensure everything is still closed up tight -- no signs yet of premature labor. I can't express what a relief it was at my first peri appointment, when I asked the doctor if she'd ever seen a UU before (typically the answer with past doctors had been "no" or "rarely"), and she said they see UUs regularly, because it's a very busy high-risk practice. I feel confident that we're doing everything we can do to stay on track.

We haven't told many people yet. I felt a deep aversion to sharing my news and having it go "viral" thoughout our friends and family. I didn't want to have to round up everyone who knew to tell them if things didn't work out. Even now, there are people in my family who don't know. I'm not sure when I'll feel comfortable telling them.

I don't believe that "God will watch over our baby." If that were true, there would be a lot more babies in this world -- in fact, there would be more in my house. If that were true, people would never miscarry or have stillborn babies or have preemies that can't survive. It actually upsets me deeply when people say things like, "this baby is God's plan" or "I know God is keeping my baby safe." It implies that people who experience devastating losses were abandoned by God.

I know the answer is supposedly "we never know what God has planned for us," and that, like Job, we are supposed to learn from the "gift" of devastating losses. But the fact that pregnancy is directly caused by unprotected sex, versus some sort of lightning strike from Heaven (Jesus/Mary notwithstanding), implies otherwise. And the fact that crackheads and murderers can have children if they have unprotected sex at the right time also seems to indicate something less than the hand of God in the mix.

I believe what science shows, which is that the human reproductive system is not perfect. For some of us, like myself, it is even farther from perfect. It's a crapshoot, and all we can do is make the best of it.

Here's hoping we've rolled our lucky 7 this time.

The Medicated Cycle

I just finished my second medicated cycle, the first one that went all the way through. Before it started I was pretty curious about how it would all go down. Everyone will have a different protocol per her doctor, but maybe this could be useful information for others to have.

Disclaimer: If you're easily grossed out, you probably want to skip this post.

On Day 3 of my cycle (the third day of bleeding), I went to the doctor for a transvaginal ultrasound (the wand that goes inside the va-jay-jay) and a blood test. The ultrasound allowed the doctor to take a look at my ovaries and ensure they didn't have any cysts left over from the last cycle. The blood test ensured I was not pregnant. I was cleared to begin medication after those tests. I started on Day 3 with 25 mg of clomiphene citate (AKA Clomid) to stimulate my ovaries. I ovulate naturally on my own, but I have a unicornuate uterus (only the left side of my uterus formed) and I have no right fallopian tube. This means that if I ovulate on the right side, the egg has no way to get to my uterus and ends up just being released into my abdomen somewhere, where it eventually dissolves. The clomid increases the chance that both ovaries will ovulate, and every time the left one works, that's a chance for pregnancy.

Clomid, however, has side effects. For me, they included increased thirst, a hot flash or two, and the most unfortunate one -- it reduced the thickness of the lining of my uterus. I took the clomid through Day 8, and starting on Day 9 I began taking a 2 mg estrogen pill called estradiol. This is a green vaginal suppository that counteracts the issue with the uterine lining. I inserted it twice a day through the remainder of the cycle. The estradiol caused intense headaches until around the time I ovulated. And because it is a green pill, it caused bright green vaginal discharge.

On Day 11, I headed in to the doctor again for another transvaginal ultrasound and blood test. At the ultrasound, I had three follicles on my right ovary (the disconnected one) and two on my left of a good size, so we were good to go. (The prior cycle had been canceled because I had no follicles on the left.) If the follicles were not large enough yet, I would have been told to come back in a day or two. This was all in preparation for my "trigger shot," which triggers ovulation.

The blood test results revealed that I had already started the 24-48 hour process of ovulation, so we were told to make sure I injected myself with my "trigger shot" that night and to ensure we did the deed that night as well.

The trigger shot is a syringe pre-filled with 250 mg of recombinant human chorionic gonadotropin. It is best injected into the belly. I was disturbed at the idea of injecting myself in my tummy, but it actually didn't hurt at all. It was trippy, sticking a needle into myself and pushing the plunger, but the pain was less than minimal.

So we did the deed that night and the next night. We were actually told to do it that night, optional for the second night, and definitely on the third morning. But I was pretty sure the show was over by the third morning, because the ovulation pains (pretty noticeable when you're on clomid) had disappeared. And the third morning was a Monday, so that was that.

I don't regret missing that last opportunity. Remember, this is a natural cycle, which means we do it the old-fashioned way, and I was inserting those little green pills. And nothing says romance like green vaginal discharge.

Starting on Day 14, I began taking prometrium capsules, which increase progesterone levels. They were also vaginal, so they got popped in right after the estradiol, creating an even greater need for a panty liner. Prometrium is supposed to help with implantation. The side effects basically mimic pregnancy, which to me is a cruel joke. My breasts were very sore, my chin broke out, and I felt irritable and tired, especially as the cycle wound down. Luckily, I'd been warned about the pregnancy symptoms, so I didn't get too excited.

At 7 a.m. on Day 28, I went in for my beta test (a blood test to check for pregnancy). I found out later that day that the test was negative.

On the bright side, I was able to stop all the meds. And the meds are not pretty. For two days after that, I still had to wear a panty liner as the meds continued to drip out. Finally, yesterday, it stopped (Day 31).

And today is a new Day 1.

Better Luck Next Time

Today was Day 11 of my medicated cycle, so I went in to get my ovaries and lining checked. I had two great follicles -- on my right ovary. Unfortunately, since I was born without a right fallopian tube (and right side of my uterus), that is not particularly helpful. The left ovary was sitting there quietly all hooked up to my half-uterus, but keeping a low profile, follicle-wise.

The doctor said we could go ahead with the trigger shot this month on the offhand chance that -- get this -- my left fallopian tube swings over and picks up the eggs from the right ovary. (I have heard of women with unicornuate uteruses [UUs] getting pregnant when they knew the unattached ovary was the one producing eggs, so I guess that's how it goes down.) But I decided just to stop the meds for this cycle. I'd rather really go for it when the chances were high.

I'm bummed, but philosophical about the whole thing. I guess that's easy since it was the first real attempt under medical observation. I wonder how far this thing will go before we actually succeed.

Stupid Unicorns

Wow, it's been a long time since I've updated. I still haven't gotten to our Ireland recap, but it's on my to-do list. Hopefully things have calmed down enough at this point that I'll have time to post regularly again.

The big news today is that Steve and I have been undergoing some fertility testing, and today we had our "what now" meeting with the doctor. At the appointment today, he confirmed that I have what's known as a unicornuate uterus (UU), which is basically half a uterus and only one fallopian tube. I have two ovaries, but my right one is just floating around in there without a tube attached. Unicornuate uterus is often associated with recurrent loss, second-trimester loss, incompetent cervix, lots of bedrest, an inability to carry twins, and a 40% live-birth rate. How does this happen? About 3 in 10,000 women have this condition (2-4 % of women have any uterine anomaly, and only 1% of those anomalies are UUs), and it's something that happens when we're fetuses ourselves and one half of the uterus just fails to form. So, those of you who know me in person: You always knew I was unusual ... now you know exactly *how* unusual.

The doctor recommended a medicated cycle, which we'll look at starting after the first of the year, when our new insurance starts. It's good to have a plan. Even though my condition has a really stupid name.

One positive piece of information I received today was that even though a lot of women with a UU have just one kidney, I have two. So that's something.

This news scares the crap out of me re: a potential future pregnancy, but all we can do is press on. And I figure, I've already lost two pregnancies, so with a 40% success rate, the odds have moved into my favor, right? (I'll just keep telling myself that.)

When I learned a month ago that I might have this condition, I started looking for info online. There's not a lot of stuff out there -- there's not even a wikipedia page -- but I did find some good resources. You can also find good information by searching for "Mullerian anomalies," of which UU is one type. In case anyone stumbles upon this page while seeking info after a diagnosis, here's a list of some useful resources.

Good Information

• http://www.emedicine.com/radio/topic738.htm
• http://home.earthlink.net/~hrair/introuni.html
• http://radiology.rsnajnls.org/cgi/content/full/233/1/19
  
• Image of a UU: http://www.uhrad.com/mamarc/mam001.htm
  

Positive Stories

• http://talk.sheknows.com/showthread.php?t=166081

Yahoo Groups (membership required to read and participate in message boards)

• http://health.groups.yahoo.com/group/MullerianAnomalies/
• http://health.groups.yahoo.com/group/ttcmulleriananomalygroup/
• http://health.groups.yahoo.com/group/uusisterhood/

Blogs

• http://citygirltales.blogspot.com/
• http://unicornuateuterus.blogspot.com/