The Story of Evelyn and Sophia

After reading this post over at Nanette's Underachieving Mommy, I am inspired to write about my pregnancy.

(Many of you know the story, so feel free to skip this retelling. I'll see you back here next time, when we'll discuss my incredulity at the fact that Rachel Ray is America's second-most-trusted celebrity.)

Getting pregnant was the easy part. It took only five months of trying, and that last month we weren't really trying very hard. It was December, we were stressed out and busy with holiday parties, gigs, trying to get our annual holiday CD out the door (someday, friends, we'll start that tradition back up again, but I don't think this is the year).

So we were kind of taking the month off from trying to get pregnant, which is apparently what it took to get the job done. The timing was nice -- we found out a few days before Christmas, so on Christmas Day we shared the news with our parents and brothers -- and swore them to secrecy. Not another soul was to know until we were out of the first trimester and in the (mythical) pregnancy safe zone.

Two weeks later, spotting and cramping sent me to the OB in a panic. It was a week before my first scheduled visit, but I was convinced a miscarriage was underway. Poor Airan was on a train from downtown, desperately trying to get to the hospital in time to be there for the ultrasound, but he didn't even come close. So I was all alone with the ultrasound tech when I got the big news -- two heartbeats, two little sacs, two babies.

(Ironic, because I'd just spent a few months teasing my pregnant friend Mary Beth about how she was eating for three, right up until her 20-week ultrasound, when she found out she was having twins. It was my karmic backlash -- I wished twins on MB, and I got them myself in return.)

So another round of phone calls to the parents and brothers with even more big news. Much rejoicing! And a little bit of fear -- because of my osteogenesis imperfecta and thus my low muscle tone, I was scared that my body wouldn't be able to keep it together through a twins pregnancy. My OB was optimistic, but I had doubts.

And just a few years earlier, my cousin Jim and his wife had premature twin boys who stayed in a NICU for six weeks after their birth -- I remember being terrified by pictures of those tiny little preemies, thinking they looked so tired, so world-weary, so fragile. How can such tiny babies survive in the world? But they did survive and thrive, and so I tried not to be too afraid.

At this point, it wasn't even crossing my mind that the twins might have inherited OI from me. I knew it was a possibility, but I wasn't worried. My OI wasn't diagnosed until I was seven, so I assumed that, if the twins did have OI, we wouldn't know or have to deal with it for years.

And so the first trimester went happily along, with lots of morning sickness, a queasy but otherwise fun trip to Paris, the barest beginnings of sort of starting to get ready for twins. We had OB visits every other week, with ultrasound heartbeat checks every time, so we were amassing quite a collection of in utero baby pictures.

At week 17, we got the ultrasound tech to place her bets on the babies' genders. She wouldn't give us 100% certainty, but she was 90-95% sure we had a couple of girls in there. Much rejoicing! Half the family confessed to secretly hoping for girls. (Honestly, I'd been sort of hoping for boys because I remember what a horrible bitch I was as a 13-year-old, but as soon as I got the girls verdict, I was converted. Girls rule!)

A few more weeks of happiness/nausea, and then the 20-week level II ultrasound. We should have been suspicious when the ultrasound tech, after chatting away through her evaluation of baby A (Evelyn), suddenly clammed up and was silent as she took measurements of baby B (Sophia). But we didn't notice. And when the doctor came in, all serious, asking me questions about my OI, still it didn't occur to us that anything was amiss. And then she showed us Sophia's femur, her thigh bone, and pointed out the fact that it appeared to be broken. And bowed. And not quite as long as it should be. And that was our evidence, years before I expected it, that at least one of the twins had OI.

It seems, as I write this, like this discovery shouldn't have been that big a deal. So what if Sophie has OI? I've lived my life with this disease. Yeah, it's really sucked at times, but it's never been life threatening, and it's never prevented me from doing anything I really wanted to do. (I never wanted to go skiing anyway. Roller skating, however...) And being an adorable seven-year-old trapped in the hospital for weeks on end has its advantages -- never in my life have I had such good luck getting people to bring me stuffed animals and root beer floats and anything else my heart desires.

Here's why I was so upset to learn about Sophie's (and, in a few more ultrasounds, Evie's) OI:

1) I know what it's like. I know having OI sucks. And I think, when I was growing up, it must have been much harder for my parents than it was for me. So I was scared for them and scared for us.

2) I did this to them. I knew full well that any child I have has a 50% chance of inheriting OI from me. I casually chose to believe that I wouldn't pass it on, that everything would be just fine, that we'd beat the odds. I am to blame for this, and had I not been so blase, so careless, I could have prevented this. (Here's where I choose not to think about the fact that, had we actually used genetic testing and in-vitro fertilization to avoid passing on OI, the egg(s) that became Sophie and Evie would have been discarded, and those precious girls would never have existed.)

We had only a few more weeks to deal with this knowledge before the next blow came. At my 25-week routine appointment, they couldn't get a good look at my cervix on the ultrasound. The OB did an internal exam and found that my cervix was completely effaced and I was starting to dilate. With 15 weeks to go.

Bed rest. They let me spend the first few days at home, but then (skip ahead, o ye of weak stomach) I lost my mucus plug. Airan rushed me to the hospital, where they discovered that I was having contractions. They drugged me and kept me in the hospital, dangling the promise that maybe in a few more days they'd let me go home to finish out my bed rest. Cue the amniotic fluid leak. Not a gushing flow, just a slow, steady leak. (I now understand why water torture is so effective -- especially if it were to involve your girl parts.)

No hope of going back home now. A fluid leak meant a risk of infection, so they had to monitor me and the babies several times a day to make sure we were all still healthy. At this point, the best they were hoping for was to get me to 34 weeks -- and from 26 weeks, that seems like a very, very long time to be stuck in the hospital on bed rest. Alas, I didn't get to find out just how awful that would be.

At 28 weeks, my water broke for real. Hard labor hit, and I spent the night writhing and moaning in a delivery room, hoping they could get the labor to stop, knowing we were looking at an emergency C-section first thing in the morning.

How can it be that the most terrifying day of your life is also the best? My tiny, tiny babies came into the world 12 weeks before they should have. They couldn't breathe without help, they couldn't eat, they had to be kept in incubators to maintain their body heat. That instinct that kicks in when you have a baby, the overwhelming need to protect and care for and provide -- useless. There wasn't anything I could do for them. But that's the day I got to meet them, finally got to see those little people who had been screwing up my life for the past six months (and who will continue to do so for the next 18 years), and welcoming them into the world was the best thing that's ever happened to me.

The girls stayed in the NICU for 10 weeks. The 10 longest, hardest weeks ever. In the beginning, while it wasn't exactly easy to leave them there, we knew and accepted that it was necessary. They couldn't breathe, they couldn't eat. They couldn't come home. But as they got bigger and stronger, as they were weaned off the breathing apparatus, as they learned to drink from a bottle, as they were moved from their little heater isolettes to open-air cribs, it got harder and harder to leave them there every night, to go home without them to an empty condo, a deserted nursery with two gaping cribs.

I started to lose it. Once-respected doctors became quacks, crackpots. Who let these idiots out of medical school? They didn't know how to care for my children. Nurses who had been friends and confidants became The Enemy. They didn't know how to care for my babies. I needed to get those girls home, where I could make sure they were getting the care they needed. I could feed them and change them and handle them carefully -- I didn't want those ham-handed nurses laying a finger on the girls.

Discharge came not a day too soon.

And, truly, happily, ever since those girls came home, life has been grand. Sure, we've had many sleepless nights. We have the occasional scare. Two babies/toddlers are a handful, that's for sure, and when you throw in a few special needs, things are even more complicated. But I wouldn't change a thing. The rocky path we took got us exactly where I want to be. Y'all know I'm not religious, so I won't say there was some sort of plan or destiny or any such nonsense. But we make the best of what life hands us, and I love my lot in life.

So that's the story. Still with me? Don't worry, I won't blame you if you skipped a paragraph or two. It's a long saga, and we all have our stories of hardship. I don't think mine is especially outstanding or unusual. It's just a big part of what got me where I am today, so it is (understandably) interesting to me. I hope you're not too bored, and I promise to move on to lighter topics next time.