On November 13, 2003, I was 30w 1d pregnant. I sat down in the nurse's room of the ob/gyn high risk practice that was following me (due to the diabetes). The nurse bit her lip, looked at her feet and said, "The doctor is going to want to talk to you about the results of your last ultrasound."

I learned from the doctor that the "problem" was that the baby had "short femurs." Size was normal, head was normal, all the organs were there and working properly, but the femurs were short. I was told they were three weeks behind expected measurement. I was told this meant the baby might have a "mild form of dwarfism," but that's probably because I'm short (I'm 5'8") or my legs are short (they aren't). I was told I shouldn't worry because the baby wouldn't die. That people with this form of dwarfism, you can't even tell, they are just short. I had no idea what any of this meant. All I had heard was that there might be something wrong with my baby, my little baby who squirmed and kicked and mooned the world all day and all night long. My little baby who had a bright cheery room, many little clothes already washed and lying in the drawer. My little baby who I'd waited so long for and worked so hard for and done everything I was supposed to for.

My dream of a perfect baby died that day, and nothing would ever bring it back.

My pregnancy, which I had just loved right up until then, even though I'd been terribly sick for the first 18 weeks, was tainted. I closed the door to the baby's room. Sometimes I would forget I was pregnant at all--look down at my stomach and be shocked to see it, swollen and round.

I did a lot of research. I read hundreds and hundreds of pages from medical journals on ultrasound screening, achondroplasia and hypochondroplasia (the "mild" forms of dwarfism), diagnosis, accuracy, false positives, as well as what the lives of people with these disorders were like. Would my baby be happy? What would life be like? What did I need to know?

I learned that the definition of "short femur" used to screen for true dwarfism (achondroplasia) was much shorter than 3 weeks behind, and that "weeks behind" didn't mean anything anyway because it was diagnosed by percentiles (3rd %ile or less). I learned that the majority of people with legs this short were just people with short legs, that the risk of a person with legs below the 3rd %ile having achondroplasia was approximately 1/200. I did not learn any of this from the doctors. I had to find out by myself, researching in the library.

We met with a geneticist who told us that the risk of achondroplasia, she felt, was minimal to non-existent. There was a possibiilty it was hypochondroplasia (the mildest form of dwarfism), and it could also be downs' or another chromosomal disorder like Turner's syndrome. I asked her what the risks of those were, based on our ultrasound results. "Oh," she said, looking shocked, "I couldn't possibly say."

I got copies of all the ultrasound test results. I found a site online that calculates the numeric risk of down syndrome based on ultrasounds and found out that my result was approximately 1/300, or almost great enough to justify an amniocentesis. I'd been told that if I wanted an amnio, it should be after 36 weeks because it might trigger premature labour and we didn't want a premature baby. I did more research, on screenings and diagnoses for chromosomal disorders.

We went for more ultrasounds to track the growth of baby's legs. They stayed three weeks behind, which was a very good sign--they weren't getting any shorter relative to the rest of her (by the way, three weeks behind in her case translated to about the fifth percentile). I scanned the images on the computer screen desperately, trying to prove to myself that she had no secondary signs. No frontal bossing, no trident hands. Sometimes I thought I saw it, other times I thought I didn't.

I vacillated terribly on the question of the amnio. Some days I felt relatively good, that the risks were low and in any case we could handle whatever happened. Some days I felt desperate, struggled to adjust to a new reality and a new life I had never prepared for. On those days I went shopping, and spent a lot of money--"My baby deserves the best of everything," I told myself, "whether she's "perfect" or not. She's perfect to ME. She's beautiful to ME." Some days I was torn by a terrible needing to know, a choking awful feeling of grief, and on those days I needed the amnio. If only so that the birth of this desperately wanted baby could again be joyful, instead of terrifying--if only so I wouldn't be ambushed in the delivery room--if only so I could prepare and work on acceptance.

I never did make up my mind.

On Sunday December 21, 2003 (35w4d), I had a surprise baby shower. I returned home and went to bed. Shortly after midnight I awoke to a wet mattress and what I thought were gas pains. Soon I realized that my waters had broken and I was in labour--the contractions were three minutes apart. I hadn't even packed my bag yet. I quickly did, and then at 3 am when the contractions were still strong and getting stronger, I awoke my husband (he was sleeping in a separate bed that week because he had a cold) and we went to the hospital, still half convinced that it was a false alarm and they'd send me home.

But no. On Monday December 22 2003 at almost 10:00 am, Frances was born--exactly one month early and weighing 5 lbs 1 oz and just over 15 inches long. In case you're wondering--that's very short.

Frances spent 8 days in the NICU while the nurses pretty well did whatever they pleased with her. They fed her from bottles even though I asked them not to--they gave her pacifiers even though I asked them not to--and yes, she ended up with a terrible case of nipple confusion (which the nurses said didn't happen to preemies) and a distinct preference for a nipple shield (which the nurses told us we needed to successfully breastfeed a premature baby). We managed to overcome this through pretty drastic measures after she'd been home several weeks, still wasn't taking the breast, and I was losing my mind using the nipple shield (which I hated) and pumping all the time to supplement her. Of course once we got her off the fake nipples she wouldn't take one again until she was 8 1/2 months old, but that's another story for another day.

Meanwhile the high-risk pediatrician determined that she did not have down syndrome and showed no signs of dwarfism. They took a blood test for chromosomal abnormalities and that, too, came back negative. Our baby was (briefly) normal.

Meanwhile, she wasn't growing very fast. Her length shot up relatively quickly over the first month or two and she briefly hit the tenth percentile, but her weight was increasing very slowly. First hypothesis: reflux. She was spitting up huge amounts after almost every feeding, and screaming afterwards for hours. We couldn't put her down at an angle of less than 45 degrees for even a few minutes or she would spit up everything in her little tummy and scream. I learned to get by on one meal a day, without peeing, without showering, and without getting dressed. Leaving the house was a joke. Her carseat bunched up her tummy and made her spit up, and from the driver's seat I would hear her choking on it and crying. Already scared adn worried over her low weight gain, I did not dare put her down during the day unless it was absolutely necessary. She slept held upright on my chest all night, and I dozed leaning upright against the headboard. She went on zantac, and it helped, but not so much that I didn't have to do all of these things.

The reflux slowly got better, but her weight gain did not improve. Our family doctor had been seeing her and was nervous about this; she had been pushing formula not very subtly for months. I resisted because it would make the reflux worse, and have a family history of allergies, asthma and diabetes, the risks of all of which are increased in someone fed formula during the first year. I did not believe it had anything to do with the breastfeeding, as she had lots of wet diapers and poops, was active and alert for many hours each day, and meeting her milestones on target. At one appointment she recommended to me that we take her to the geneticist's again because her eyes were "unusual."

"She has her father's eyes," I replied.

I went home and cried. Her eyes, her beautiful big blue eyes, were one of the things I loved most about her. How could they mean that anything was wrong?

We got in to see the high-risk ped who'd seen her at the hospital and he agreed to take her on. This was a huge relief; he didn't push formula or panic over her unusually slow weight gain. But he did want us to see the geneticist. Our respite, our period of having a "normal" baby, was over.

We saw the geneticist. She agreed that her eyes were unusually prominent, that she was very small. Furthermore her ears were low-set and her anterior fontanel (the one on top) was very large and closing slowly. I discovered that as painful as it is to hear about a problem with the baby to be, it is nothing like being a mother and hearing a doctor discuss your child's "abnormalities." She suspected a craniosynostosis disorder, possibly crouzon's or pfeiffer's syndrome, though the wide-open fontanel gave her pause. She said we could have a blood test taken and the genes analyzed to be sure. That's what we decided to do.

I was paranoid about her "unusual" appearance for a while. People looking at her made me feel sensitive and strange. I was over-protective. I didn't want to leave the house with her and expose her to other people who might think she was "unusual." LIke the lady who led one of the baby programs at the rec centre, who said she had a niece who looked "like a turtle" when she was a baby, and now she was a really pretty girl! I took great comfort in the many, many lovely people who stopped us when we were out to compliment her on her big mop of blond hair, her sweet demeanor and her huge blue eyes. They might be unusual, but they got a lot of compliments.

I took my five month, not-yet-10-lb baby to the lab and another nurse and I pinned her to a gurney while she screamed so another nurse could take several vials of blood out of her little broomstick arm. I was told I should have the results in "a few weeks."

It took four months.

The results were negative. She did not have a craniosynostosis disorder.

So back to the geneticist's we went because if she's short, her fontanel is closing slowly, her ears are low-set and her eyes are prominent (though the doctors are no longer convinced of this--it seems she's grown into them. I could have told them that, but whatever) there has got to be something wrong with her, right?

Right?

Personally, I don't know. Our next appointment with an "expert" is May 17, and hopefully we will know after that. But I've thought that so many times by now that I am halfway resigned to never knowing. I worry about what this will do to Frances's self-esteem, growing up with doctors rambling in her ears about her "unusual" features and how they must be "pathological." It's hard enough for me to hear it.

So that is our long story.

If you've actually read through the whole thing--Congratulations! I think that deserves a prize of some kind.

If you are pregnant or expecting and you have been told that there might be something wrong with your baby, I hope you were able to take some comfort from this. You are not alone. Whatever you are feeling is normal and healthy. It will get better. Hang in there. Doctors can be and have been wrong. Frequently. Keep reading the rest of my ultrasound entries. There is a lot of information in there about the frequency of false positives--which outnumber true positives by a huge margin.

If you are a parent with a "different" child then you already know all of this, don't you? Only maybe you think I'm whining and spoiled because, after all, my baby isn't sick and doesn't need surgery (though we thought for a while that she would, on her skull) and is meeting her developmental milestones. I do feel very blessed for this. It could have been so much worse.

If you too are living in a permanent limbo-land of some presumed diagnosis that never materializes, then you will know already about the constant anxiety that never quite fades. How sometimes when you are staring at your child's beautiful face you will also be evaluating their "unusual" features, to see what it is the doctor sees, and if maybe they're right.

This is not the whole story.

Of course it isn't.

Look at how beautiful she is. I'm not biased, either.

This story, that I've written here, is the story of all the terrible things that I did not expect, but which I somehow survived. And got used to. But it is not the whole story.

You didn't read here about how much I love her. Or maybe you did, in my post yesterday. You didn't read about how perfect and flawless she is to me, how I would not trade a hair on her head, how if this year and a half is the price I have to pay for Frances to be the loveable little person she is, then I would pay it over again. How I would never trade her for a "normal" baby, or even herself made somehow normal.

You didn't read here about the charming, sweet, giggly, smart, amazing little individual person she is. About all the days in between the weigh-ins and the appointments and the tests and results, when I hardly ever even think about this. You didn't read here about our picnics in the park, about how charmed and enthralled her daycare workers are with her, about how much she laughs, or how much she loves to play kissytickles or belly biting baby (it is what it sounds like). How she lights up whenever she sees the cats and tries to chase them around the kitchen. How she loves chocolate. And cheesies. How well she does with strangers, how social she is. You didn't read here about how happy she is.

Life with her is amazingly, overwhelmingly good.

I couldn't have pictured this back at that doctor's appointment, when I first got The News (which turned out to be wrong anyway).

But it's true.

There was a time I could not have imagined things being this ok. I could not picture my life with a child who was "different." When I was pregnant, the only thing that reassured me was that they might be wrong (and as it turned out, they were, about the dwarfism and the chromosomal abnormalities anyway). I could not have pictured myself coping with any of this. I could not have pictured myself remaining relatively sane and even happy.

But that was before I knew Frances. Now I love her so much, I can't picture her any other way, and whatever "condition" she has (if she has one) is such a small part of our life together. It's just another thing about her. She has big blue eyes, a throaty little laugh, when she sleeps she has a huffy breath, two crowns on the back of her head make her full blond hair (already two inches long born one month early) stand up in a teeny mohawk. And, oh yeah, her fontanel is closing slowly, she is still growing out of her size six-month clothes, her ears are a bit low-set which makes finding glasses that fit her tricky.

Our life has not become her diagnosis, whatever it turns out to be.

I did not think, before she was born, that I could be a mother who coped with this. Those mothers you read about in the newspaper, the ones with babies who have some disability, those stories that make them sound so heroic and noble--they are not special women. They are mothers. Probably before the baby was born they, too, believe they could never cope with a baby who was "different."

I didn't think I could be that mother. There was a time when I was thinking seriously of terminating the pregnancy, depending on what we found, if we found anything.

I'm glad I didn't. I don't think it was "more right" or "moral" or whatever. But I have Frances, the greatest prize I could have asked for. And I could not have imagined myself being a woman and a mother with a "different" baby who went to all these extra appointments and who worried desperately sometimes about what was wrong and investigated memberships in organizations for people who are "short" or who have "facial differences". I know this is not really comparable to the experiences of mothers who have disabled children. But I could not have imagined this life for myself, as relatively easy as it may be; I could not have imagined myself coping with these difficulties.

But I did.