Tuesday, July 31, 2007

I can't believe it's been so long since I've written. I knew it was a long time, but nearly a month? Loooong.

It's been an up-and-down month, with doctors giving sometimes conflicting information, my hopes going up one day, crashing down the next, DH doing his best to be the stable rock I hang onto when it all gets to be too much. Nothing else to do but wait and see how Zoe is once she's born.

Did I mention we picked a name? Zoe Francis. Zoe because we like it and because we like the meaning: Life. Francis for my dad, even though he never went by that name and always used Frank instead. We had an ultrasound a few days ago and saw Zoe kicking her legs, flexing her feet...DH even thinks he saw her curling her toes, though I have no idea how he could have possibly seen that on the grainy black-and-white sono screen. Still, it's good news. And I feel her kicking now, annoyed by the pressure of the edge of the laptop on my abdomen, right above her legs. Kick-kick means nerves that work, nerves that are getting messages from the brain to the body, all the way down the legs and to the feet. I have to stop myself from deliberately poking Zoe, hoping she'll kick back. Just three more months to go.

I've been working on a blanket for Zoe. It's alpaca, Knitpicks Decadence in a deep wine-red color, made from the February baby blanket pattern in EZ's Knitter's Almanac -- double knitting, which takes twice as long but results in a blanket twice as thick and soft, bordered all around in garter stitch. Simple and beautiful. I'll have to take a photo to post.

And one more thing, a special treat for myself, something I started working on before I found out all this about Zoe, something that just arrived in the mail the day before yesterday and that stunned me with its beauty and craftsmanship.

It's a Golding custom spindle, and the slightly out of focus photo doesn't even begin to do it justice. It's a Chinese dragon, a design I worked on with Tom Golding over several weeks, tweaking it until it was just right, picking out the perfect vintage carved silver ring for the outer edge, choosing the wood -- dark walnut -- and the paint colors, everything, and still it came out so much more beautiful than I imagined. You can't really see in the photo, but the dragon is covered in tiny painted scales, he has little flaming golden eyebrows and a shot of fire coming out of his mouth. Even the claws have been individually carved out of the wood, one by one.

Chinese dragons bring good luck. My spindle couldn't have come at a better time.

Monday, July 09, 2007

Checking In, Checking Out

It is so hot...too hot to move, too hot to think. These are the days -- and nights -- when I want to throw my eco-friendly, too-cheap-to-have-AC reservations to the wind and freeze the hell outta this house until we're all nice and comfy and completely unaware that it's an absolute blast furnace outside. Right now, it's a blast furnace inside, and it's nearly nine at night.

Baby M is too hot to sleep. She's whiny and fussy and calling for me endlessly. Trouble is, when I sit with her, she really never gets to sleep -- just stays up, holding my hand, looking around, basically waiting to see what's going to happen next...which is never anything except my eventually leaving the room so she can get to sleep, whereupon she wails as though her little heart were breaking. Hearing her cry like this on top of the heat is just about making me crazy.

DH is outside, and believe it or not, he's working at his smithy, which means he's heating metal rods to red-hot and banging them into different shapes.

The man has truly lost his mind.

Friday, July 06, 2007

No Guarantees

There's only so much that medical science can tell us. Today we met for the first time with the pediatric neurosurgeon, Dr A, who read the MRI. He was the most hopeful-sounding of the doctors yet. He said this doesn't look like a typical case of spina bifida at all to him, not the kind with brain damage and all the other horrific possibilities we were first confronted with last week. He thinks instead this may be a case of a tethered spinal cord, which basically means that during formation some part of the spinal cord didn't fully detach from the surrounding skin. This condition can cause problems as the child grows, but it can be corrected surgically after birth. There's a range of potentialities: in the best case, the child could wind up with no lasting aftereffects at all; in the not-so-best-case, the child could wind up with some degree of paralysis and/or loss of bowel/bladder control. The doctor said they won't know more until our baby is actually born, but he thinks the main worries are the physical problems -- he feels that her chances of having brain damage are very slim.

And so, we wait and hope. I totally broke down in the doctor's office today, not out of sadness but because he'd confirmed the hopes I'd been holding onto these past few days. Poor guy; I don't think he could quite understand why I was crying like a baby but telling him I wasn't sad, I was happy.

I was also pretty stunned to hear him say, as we were discussing going forward with the pregnancy, that some couples wanted him to guarantee that their child would be 100% fine and healthy, and if he couldn't do that (which of course he can't in any case), they would terminate the pregnancy. DH had actually suggested that maybe the reason our first doctor had been so callous and matter-of-fact about wanting to do that with us without even getting a second opinion was because most of his patients opted to do that as soon as they heard there was a problem. I thought DH was just being cynical, but after hearing Dr A today, maybe he was right after all. I'm certainly the last person to judge someone else -- I know how agonized I was when I thought our baby would be so profoundly damaged that she would have no quality of life at all -- but it just seems sad that people would need a guarantee of a perfect baby in order to want one at all. I mean, nothing in life is guaranteed, right? Everything can look perfect but not be, just like everything can look hopeless at first glance but not be.

In any event, we've made our decision, and as DH says there's no looking back. We'll have our daughter at Columbia-Presbyterian where she can have an MRI within a day or two after she's born to find out the extent of her injury and the best way to treat it. The facilities aren't as nice as the ones near us -- shared rooms instead of private, more patients therefore (I'm sure) less personalized attention from the staff -- but the doctors are so much more knowledgeable and competent in dealing with high-risk pregnancies than our local doctors are that it will be worth it.

Now all we can do is wait and see what the tests show after our little girl is born.

And of course, we can now jump headfirst into all the fun stuff we should have been doing since last week, like picking out a beautiful name for Baby M's little sister.

Wednesday, July 04, 2007


Had the MRI yesterday. I am consistently impressed with how good the staff at Columbia-Presbyterian is. The procedure itself -- my first MRI -- wasn't bad at all. After getting a foot-long needle in the abdomen for the amnio, I suppose no other test will be quite as bad, ever.

And now, we wait. I'm strangely calm. What worries me now is that I've gotten too hopeful, hung on too tightly to the positive comments the doctors have made. No chromosomal abnormalities, no indication of anything wrong in the brain, no unusual chemical markers in my prior blood tests that would indicate an open lesion...how can I help but picture a best-case scenario, one where my little girl has no lasting effects from whatever this thing on her back is?

We'll know more on Friday.

Monday, July 02, 2007

One Small Step

I can't say thank you enough to everyone who was kind enough to comment on my last post. Thank you for your words, your wishes, your thoughts and prayers.

DH and I are hanging in. Today we got the preliminary results back from the amnio, and they show no chromosomal abnormalities -- so that's one bright spot at least.

Tomorrow I go for a fetal MRI; Friday it's a meeting with the pediatric neurosurgeon and hopefully the complete results of the amnio plus the MRI. All we can do is hope for more good news.

It's strange; I can feel my little girl kicking away inside me as though nothing in the world were wrong. It's so hard to believe that she really, really might not be all right.

Sunday, July 01, 2007

An Appeal

It's been a rollercoaster of a week. Wednesday we went in for our 20-week ultrasound all ready to find out whether it's a boy or a girl. What the doctors told us instead was that our baby -- a girl, incidentally -- has spina bifida.

Spina bifida is a neural tube defect. It occurs when the spine doesn't close properly over the spinal cord. This results in all sorts of damage, anything from major paralysis and brain damage to, well, maybe no damage at all. It all depends upon just about a million factors, such as how low on the spine the problem is, whether the spinal cord itself is involved, whether it's exposed to the amniotic fluid.... You get the drift.

So, Wednesday sucked hard. It didn't help that the doctor who did the diagnosis suffered, in DH's words, from a serious case of hubris. This doctor, who shall remain nameless, basically said, "You can go for a second opinion if you want, but any other doctor will agree with me." He then told us we had a week to arrange to terminate the pregnancy.

Needless to say, we went for a second opinion. We were supremely lucky to get referred to Columbia-Presbyterian Hospital. The staff there is top-notch, everyone from the doctors to the "customer care coordinator" to the person who does all the fiddly insurance stuff. Kind, caring and totally, one-hundred-and-ten-percent professional all the way.

They squeezed us in for an ultrasound on Friday morning, and that doctor -- who suffered from no hubris at all -- said it could be one of two things: spina bifida (which he tended to think was probably the case) or something called a sacral-coccygeal teratoma -- basically, a benign tumor that carries its own potential problems, such as the potential to grow large enough to suck too many nutrients from the fetus and cause damage in utero. At least this doctor, Dr. R, gave us specifics: the mass is 1.9cm and located in the sacral area of the spine, vertebra S1 or below. This is far more than Dr Hubris even bothered to write up in his report, which was so vague that a friend of ours who (luckily!) just happens to be a well-respected pediatric neurologist, and who we showed that first report to as soon as we heard the news, basically said she couldn't tell us anything at all from it.

So, here's where we stand. Wednesday we pretty much heard a death sentence for our little girl. Thursday after consulting both our friend the pediatric neurologist and a pediatric neurologist recommended by Baby M's pediatrician, we heard some of the potential things that could be wrong with a baby with spina bifida. Awful, awful, awful. Crying, heartsick, awful days. Friday we took the second ultrasound plus an amnio, something I'd avoided because of the risk of miscarriage it poses, but now a necessity to make sure there's no chromosomal abnormality that may be the cause of (or simply another problem to go along with) the visible mass. And we gained back some hope. Maybe it isn't as black as it sounded at first. Tuesday I'm scheduled for a fetal MRI, which is probably the best chance we have of finding out if this is definitely spina bifida, and if so, how serious it may be. In our advantage are the facts that it seems relatively low on the spine, there's no indication of anything wrong in the baby's cerebellum, and so far at least, it looks like whatever's inside that mass isn't in contact with the amniotic fluid (doctors know there's a connection between contact with the amniotic fluid and damage to the nerves in the spinal cord, they just don't know why). Dr R basically said we could have a baby with problems...or we could have a baby who gets operated on at birth and shows no aftereffects at all. And much as all these tests can tell us, what they can't do is guarantee anything at all. It's all a guess, albeit a more informed one.

Spina bifida is a one-in-a-thousand thing and doctors don't even really understand what causes it, although they suspect some combination of genetic predisposition plus environmental factors. It just goes to show you can do everything right -- take the prenatal vitamins, not drink, smoke, do drugs -- and still something completely unexpected and horrible can happen.

So, here's my appeal. Please put in a good word for us, for our little girl, with the higher power of your choice. If you're not a higher-power type, please just send us some good thoughts and wishes. We're hoping to hear good news, or at least the best news possible under the circumstances, in the next few days. Please keep your fingers crossed that we do.