Short Story About Egg Donation

So, after this long hiatus, I come back to the blog to post about a discovery I made on the Web today.

I was surfing for something else entirely and happened across Lillian Fishman's short story Glass on the site Necessary Fiction.

I'm not sure what made me click the link and start reading; when I realized the story was about egg donation, from the point of view of a donor, a chill went up my spine.

And having read it, I'm unsure what I feel about the story, which is about a young woman named June who is about to earn $30,000 by donating eggs to some alumni from her (apparently expensive) college.

“Think of the money,” she tells her sister over the phone. “I don’t even know what I’m doing for the summer. Let alone with my life. It’s not a bad gig.”

“You can’t just give yourself up like this,” her sister says. “It’s too weird.” A long pause, and then: “What if you run into your kid on Bleecker in fifteen years?”

“I’ll never know,” June says.

I guess, in some ways, the story made me sad. I have always worried about what, to me, is the darker side of egg donation: The fear that a young woman could be emotionally harmed, either in the present or in the unknown future, by her decision to donate. And that by offering her money for this precious gift at a time when she is young, fertile, and relatively poor, we (who are old, infertile, and if not rich, then credit-worthy) are luring her into self-harm.

And yet. There is nothing wrong with paying a donor for her time and trouble (ours received nowhere near $30,000, bless her.) I just don't like to think of another woman being hurt by my need; my deficiency. It's why I asked to be matched with a donor who had already had her child and didn't want any more.

It's the elephant in the room, I guess--this terrible imbalance of power, affluence, and need between women who have viable eggs, and women who don't.

Anyway. Read the story, which is excellent. And give it some thought.

Egg donor child: Video!

Watching and listening to this beautiful girl, I'm reminded that sometimes, just sometimes, life gives you what you need, when you need it.

I came across this video tonight when I found a new blog, that of the lovely Donor Diva--check it!--and I just yelled for my husband to come and listen to Allegra with me. I've been thinking lately that it's time to introduce the idea of donor egg to my darling girls, who are four and two this year.

I've always been in the "tell" camp, for reasons I'll blog about one of these days when I have time to get into the tall grass. Instinct -- and now Allegra -- has led me to believe that if I plan to tell my girls of their origins at all, it had better be when they are young. Very young. That way, as they grow it will simply be part of their normal. Egg donation will no doubt be a topic we return to many times over the years as my daughters grow and understand more, but it will never be a shock or a betrayal.

Lately, Madelyn has been putting little stuffed animals under her shirt and telling me, "I have a baby in my tummy!" so I think the time is right for this conversation. Tomorrow, I'm going to order some children's books, and maybe by next week I'll be reading them to her.

But I am nervous. In dread, actually. So I am deeply grateful to have "met" this a dazzling young woman, who embodies all that my girls can become. And who has, for tonight at least, laid my fears to rest.

Who is the real mother of a donor egg baby?

Today I happened across a blog post that led me to a January 7, 2010 news story from the Jerusalem Post. It reports that many of Israel's rabbis now believe a child of donor egg is Jewish only if the egg came from a Jewish egg donor. This is a reversal of their earlier opinion that a child is Jewish if born to a Jewish mother, regardless of whether she used a Jewish egg donor.

I am not Jewish, and do not pretend to understand the importance of establishing Jewish heritage for a child of egg donation. If that's you, I refer you to Melissa Ford's excellent analysis at her blog.

What struck me about this rabbinical opinion is its implication that the egg donor is considered to be the real mother of a child born of donor egg IVF.

A mother or would-be mother of a donor egg child spends a lot of time thinking about the nature and experience of motherhood. Given that she shares no genes with the baby, will she feel like the baby's real mother?

This is not the emotionally self-indulgent question it appears to be at first glance. It would be a grave sin against any child to become its mother, without the ability to bond emotionally with the baby. This was my greatest fear before becoming a donor egg mother: That I would not feel like my baby's real mother, and would not be able to love my baby as I should.

In Mothers and Children, writer Susan E. Chase discusses how reproductive science has divided the concept of motherhood. No longer must it be embodied in one woman. Today, a child can have a genetic mother (the egg donor), a gestational mother (who carries the child), and a social mother (who raises the child).

Who then, is the child's real mother?

With regard to establishing Jewish heritage, rabbis say it's the Jewish egg donor. Some adoptees, who have a a deep need to find their birth parents, might agree with this even when when they love their adoptive parents dearly. And literature abounds with stories based on the King Arthur fantasy, that the parents we know are not our true parents. In these stories, real parents are those of blood and bone.

I do not deny the role that our egg donor has, and will always have, in my daughters' lives. She is their genetic mother. I do not flinch from the word mother when I think of her, with such gratitude for the gift she gave. If my girls want to know her when they are grown, I will support that choice.

But I am my daughters' real mother. Not because I am their gestational and social mother, but because I love them, deep in my blood and bone. And because I will care for them to the best of my ability, for the rest of my life. It is that simple.

So with thanks to Margery Williams for the paraphrase, let's listen to the Skin Horse and the Velveteen Rabbit.

"What is real?" asked the Rabbit one day.

"Real isn't how you were made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, really loves you, then you become real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse. "When you are real, you don't mind being hurt."

"Does it happen all at once?" the Rabbit asked.

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are real, most of you has been loved off, and you get loose in the joints and very shabby. But these things don't matter at all, because once you are real you can't be ugly, except to people who don't understand."

Considering egg donation? Keep it on the down low

Recently I had a blog comment from a lady who is just starting her journey with egg donation, and her post got me thinking back to that time. I realize it's strange for a woman who blogs on the public Web about egg donation, to tell others to keep quiet about it. But bear with me, and I'll explain why.

Using donor eggs is rarely -- never? -- a woman's first choice for how to have a family. Most of us come to egg donation after a long battle with infertility. We run a grueling course of monthly disappointment, failed cycles, and sometimes the heartbreak of miscarriage. And what do women tend to do about our problems, our struggles, our tragedies?

We talk about it. We talk about it a lot.

When I first learned at age 38 that I had diminished ovarian reserve, with a Clomid Challenge FSH of 40 (you all know what that means, right?), my doctor cut straight to the chase. He told us the odds were long on having a child with my eggs. He advised us to switch to a practice that could offer IVF with donor eggs. And he warned that if I pursued pregnancy with my eggs, I would have a high risk of miscarriage.

I was devastated. This diagnosis was truly like a death in the family. It was the death of the children I would never have, and I grieved my loss. Loudly, and to anyone who would listen.

All my friends and family knew what the doctor said and how I felt about it. Anytime my girlfriends and I got together, I talked about my infertility and asked what they all thought about egg donation. Business lunch, football party, it didn't matter -- I talked about my issues. And when I felt I needed even more self-expression, I started this blog. Talking, writing, and a lot of tears: That was how I worked through the grief of never being a genetic mother. Some people hold their pain close. I let mine run wild. For me, it was a coping mechanism. It was how I got through.

To the everlasting credit of my friends, they put up with me. (My husband and family get no credit, as they are contractually obligated to endure.) Two of my dearest friends even offered to be donors.

Fast forward to today. I have two beautiful little girls born of anonymous egg donation. Everybody in my family and group of friends treats my girls the same as all the other kids getting underfoot on holidays. But...they know. In the back of my mind, I can't forget that all of them know my girls' origins.

For me, it doesn't matter any longer what people think of my choice. My girls are perfect in my eyes. If I could wave a wand and make them my genetic children, they wouldn't be themselves. And the world without Madelyn and Lilly, exactly as they are? Not to be thought of.

The problem is, I am not sure how my girls will feel about their donor egg origins. We plan to tell them about egg donation, and it's very possible they would want that part of their history to be private to our family. But it's too late for that. I took that choice from them with all my blathering.

Also, you may decide while pregnant or after your baby is born, that you would rather not tell your child about his or her egg donation origins.

I have had a purely unscientific poll running on this blog for about three years (look at the top right part of your browser.) Of the 273 people who have voted on the question "Will You Tell Your Child About DE?", a full 25% have answered no. If you've told all and sundry that you are doing a DE cycle, you won't be able to change your mind later and keep the choice private. Not without telling some whoppers.

So my advice to you, if you are just considering donor egg: Play your cards close to the vest. Don't talk about it to everyone you know. Or if you do, speak only in general terms. There are ways to get the help and counsel you need without sacrificing your children's privacy:

1. Find a good support forum like Looking to Be a Mom Thru DE, and cut loose there. Take care to maintain anonymity when creating your online persona.
2. See if there's a counselor at your infertility clinic who would talk with you for an hour.
3. Make your partner be your confidant.

I'm not saying you shouldn't tell anyone about pursuing egg donation. Each person's needs and relationships are different, and there are plenty of future donor egg moms whose donor is a friend or family member.

Just keep in mind that once you've told, you can never "un-tell." If it makes sense for you, save that choice for your children.

Left over embryos: What to do?

We have a basket in our kitchen. It's a pretty big basket. And it's usually overflowing, because it's where we throw unopened mail, receipts, magazines, preschool artwork, papers that come home from school in the kids' backpacks, even the odd library book (found it!).

We pay almost all our bills online, but there are a few that end up in the basket. So unless I've got time to empty the whole thing -- and believe me, blue moons come around more often than that -- I have to root through the pile a once a month looking for accounts that need to be paid the prehistoric way (with a check and a stamp).

One of those comes quarterly, from our infertility clinic. A fee for storage of our frozen embryos.

Before Lilly was born, I paid the fee four times a year without a thought. We were worried about trying again after Madelyn's spina bifida, but somewhere inside me, I knew I'd be doing a frozen embryo transfer cycle. At that time we had eight embryos remaining. Before the cycle that gave us Lilly, I remember considering, briefly, the idea of thawing all of them and transferring the two or three that looked best.

Why would I do that? Embryos are precious, requiring many thousands of dollars to create, and freighted with all our hopes and dreams of parenthood. The more logical course -- and the one we ended up following -- was to thaw four, transfer two or three, and leave four in reserve in case I did not become pregnant. But I did, and now we have our precious Lilly.

And we still have four embryos.

Lilly is a thriving one-year-old, and the embryo storage bill has appeared in the basket once again. It's time to make the decision I wanted to weasel out of by thawing all eight and letting the embryologist choose. Rather coldly, doctors call this "embryo disposition."

In a perfect world -- in which I win the lottery, quit my job, mother my girls full-time, and travel the globe in search of money-is-no-object treatments for Madelyn -- I would not have to face this choice. Or rather, its terms would be different. The decision would become the same as before Lilly: The recurrence risk for neural tube defect is 1-2 in 100 births, versus 1 in 2,000 for the general population. If we chose to roll the dice again, I could take enough folic acid to choke a cow, do another frozen cycle, and let the pee sticks fall where they may.

But in the world I have to live in, we cannot afford another child, especially if that child might have spina bifida. We are still in debt for our donor cycle, and our family's medical expenses are steep. I have no option but to work, yet if I had a third baby we couldn't afford the daycare that allows my income. And even if we could somehow solve that problem, if we had another spina bifida baby, the financial consequences would be crippling.

Some women who don't want to discard embryos would just take the chance of cycling, assuming it's unlikely they'd get pregnant anyway. After all, the success rate for frozen cycles is less than 50 percent. But if there's one thing I'm good at, in my whole sorry reproductive history, it's implanting embryos. (I have done five cycles and became pregnant four times.)

So for all these reasons, I cannot risk another cycle. Even though a deep and irrational part of me desperately wants to. And in complete honesty, I do not know where that urge comes from. It is just a mother's normal sadness when she realizes that she'll never have another baby? Or is it the embryos themselves that trouble me?

I'm not the only one facing this problem, according to a Mother Jones article titled Souls on Ice: America's Embryo Glut and the Wasted Promise of Stem Cell Research. As the article describes, people like me just keep writing the check, year after year, because we cannot decide what to do with embryos we have chosen not to transfer.

I know what you're thinking. You're wondering why I didn't consider the moral and emotional dilemma of excess embryos before I did the cycle that created them. And possibly you're wondering whether I did think about it, and just brushed it aside amid my overwhelming desire for a child.

What I can share is this: It's different now that I have Madelyn and Lilly, born of the embryos we made. Back when we were cycling, embryos were science--and the more we could make, the better our chances of becoming parents together. Now, my embryos are potential siblings to my daughters. No matter a woman's opinions on abortion, reproductive rights, and all the rest, she will think differently about embryos after she becomes a mother through IVF.

Incredibly, as reported at Science Daily and confirmed in a Los Angeles Times article on embryo legislation, some states are considering the idea of making abandoned embryos "wards of the state." Many people, it seems, consider embryos to be unborn children.

It follows that to those who hold that belief, discarding embryos is equivalent to abortion. This idea horrifies me. I have always opposed abortion, the more so since doctors offered me the chance to terminate Madelyn at 19 weeks (after seeing eyelashes on the ultrasound!).

People can and will argue "when does life begin?" until the fabled cows come home, and I won't bite on that one. But I do not believe that allowing a few-celled embryo to stop dividing is the same as detaching a growing fetus from a womb, given the fact that the fetus from very early days has a nervous system to feel the experience.

Is that just an easy answer for my situation, something they call "moral relativism?" Is it ethically indefensible? Maybe. But it's what I've arrived at after more than one sleepless night. I still wish things were different, and we could give those four embryos the chance I gave to Madelyn's and Lilly's embryos. But we can't.

So what are the options for couples with left over embryos? Miracles Waiting has a nice summary:

1. Leave frozen indefinitely
2. Thaw and discard
3. Transfer in a way that cannot produce pregnancy
4. Donate for scientific research
5. Seek embryo adoption

My husband is not comfortable with embryo adoption. And I feel it is disrespectful to thaw and discard our embryos, or donate them for research.

So we have chosen the third option, commonly called "compassionate transfer," in which the embryos are thawed and placed in my body at a time and using a method that cannot produce pregnancy.

It's a strange choice when you think about it. What does it matter whether the embryos stop growing in a dish in the laboratory, or inside my body?

My obstetrician, who is also a friend, put this in context for me: "More often than women will ever know, fertilized eggs 'roll on through' and do not implant. It's the way nature works." In fact, that's exactly what happened to the embryos that we transferred with Madelyn's and Lilly's embryos, that did not grow into children. By choosing compassionate transfer, I'll be putting our remaining embryos back where they would have been if naturally conceived, but not implanted.

And the mother in me, as I think about the children who are not but might have been, simply wants to hold them for that brief time. And say goodbye.

Lillian Hope

Hello, friends! If anyone still has me on their RSS feed. After so long away I return to my blog to post about Madelyn's little sister Lilly, who was born January 9, 2008.

Lilly is as beautiful as the day is long, with round blue eyes and such a ready smile, unless I take her to the portrait studio, of course. This week she learned how to yell really loud, and to blow raspberries with her oatmeal.

She is Madelyn's full sister, born of the love of her parents and a frozen embryo transfer -- and she doesn't have spina bifida. We agonized over whether to try for Lilly, but in the end we decided that having another child was worth the risk, and we were blessed. (Not to mention, flat-out lucky, though the odds were in our favor.) We won't tempt fate again, but I'm peaceful with it. I feel our family is complete. Lilly sleeps through the night now, and Maddy's doing just great -- she hasn't had surgery in over a year, and she walks and dances and has all sorts of opinions about how her world should be. Just ask her.

Even though we all know that siblings don't always look alike, I was somehow expecting Lilly to be Little Maddy II, but it just ain't so. Maddy has gorgeous chocolate brown eyes and doe-brown hair, while Lilly has deep blue ones and looks to be sporting strawberry blonde when she gets more than fuzz. I look at the two of them and I'm just in awe. I never knew I could love so much.

More soon -- I've got a plan or two for this blog, something better than letting it lie fallow. After all, it celebrates the most wonderful thing that has ever happened to me: Maddy and Lilly.

Power to the people

I've never been much of an activist. I tend toward the conservative in most of my views, with a few bizarre left-wing outbreaks. I do vote regularly, but otherwise my political action runs to watching the evening news and bitching about my state's illegal funding of public schools. If that counts. Recently, however, I did something that made me think about the power of the individual. Specifically, me.

A little background. Frequently -- I should rather say, daily -- I am on the Internet researching something to do with Maddy's spina bifida. It's a two-edged sword, as I wrote about in my last post: Often I find information I wasn't looking to find, that causes pain or worry. (For anyone who's wondering, I've confirmed with a geneticist that obese women are twice as likely as normal-weight women to have children with spina bifida. I'm dealing with it, in my two-steps-forward, one-step-back way.)

When I do my research, I usually start with the Google search engine. I will cop to the charge of being a compulsive googler. And I noticed that whenever I typed "spina bifida" as my search criterion, the same advertisement would display in the top right part of my screen. Something like, "Your baby's spina bifida could have been prevented by using folic acid." To add insult to injury, sometimes this ad would display on my own blog.

Once a person has learned to read, she can't help but take in something that hits her eyes. You'd think I and all other readers would become numb to the onslaught of words. But I noticed that advertisement every time I saw it. And every time, I felt a sickening twist of pain.

Nobody knows the true cause of spina bifida, and it's proven that even women who supplement with folic acid (as I did) can have spina bifida babies. To an admittedly thin-skinned new mother, it's offensive to state categorically that folic acid could have prevented what happened to Madelyn. The dark subtext is one of blame: "Attention please, Mommie Dearest. If you'd taken enough folic acid, your baby wouldn't have spina bifida. Click here now." That advertisement was salt in the festering wound of my guilt.

For months I ignored the ad as it jabbed my eyes over and over, like a paparazzi flash bulb. I told myself it was really no skin off my nose because I did take my prenatals and there was nothing I could do about either the ad or Madelyn having spina bifida. But one day, without really knowing I was going to do it, I found myself clicking on the ad, the way you'll scratch a mosquito bite even though you know you're going to draw blood.

The destination was www.spinabifidalaw.com, which purports to be the Spina Bifida Advocacy Network. Sounds very philanthropic, no? But a few more clicks revealed that this was the web site of a law firm inviting spina bifida parents to sue their doctors for not telling them the benefits of folic acid ("Do I Have a Case? FIND OUT NOW!").

Yeah, I know. You see it on TV all the time: Class-action lawsuits, negligence cases, and the like. Let's all sue for something, right? But this was personal. I was outraged. They were causing pain for spina bifida parents -- at least, for one of us -- with their insensitive advertisement, even as they sought to make money off us.

Full of righteous wrath, I did three things. I emailed my sister-in-law...well, I should say I ranted at my sister-in-law...who will soon be a lawyer herself, wondering if, indeed, I had a case against these lawyers, for adding even one jot to my anguish over Madelyn. I also emailed the lawyers themselves, telling them exactly why their advertisement was false and insensitive. And I wrote to Google about the ad.

And then, having irrevocably hit "Send" on these three emails, I commenced feeling foolish. Temper tantrums will tend to turn on you, and bite you on the ass. Why had I let a little advertisement bother me so much? For the next few days I dreaded opening my email, wondering if I'd get flamed but hoping I'd be ignored. (Cindy Sheehan, I ain't.)

My sister-in-law kindly wrote back to tell me that to sue for damages you have to have damages, and not just of the intangible kind. She said I should consider writing to the bar association in the state where these lawyers practice. I was already feeling so shamefaced about my tantrum that I let that slide. Neither the lawyers nor Google ever responded.

But lo! A few days later, back to my Googling ways, I found there'd been a change to the ad in the top right corner of a "spina bifida" search:

Spina Bifida
Could Your Baby's Spina Bifida Have
Been Prevented By Using Folic Acid?
www.spinabifidalaw.com

Holy Eats, Shoots & Leaves, Batman! One little word, moved from one end of the sentence to another, plus a question mark. And it makes all the difference.

Did the law firm or Google change the advertisement because of my email? I'll never know for sure. But now, when I see that ad (and it still pops up regularly), I no longer feel pain. I feel a little glow of pride, and a tiny seed of confidence that I can take care of Madelyn and myself. Whether it's taking on a school board to get Maddy services, arguing with doctors who know loads about children with spina bifida but zip about my baby, or just firing off a few snippy emails, I'm beginning to think I really can do this special-needs parenting thing.

For today, anyway.

I want to be overweight!

Now, how many people can say that?

Apparently, about sixty million Americans share my goal, because we are obese. Being merely "overweight" would be an improvement in my condition.

"Obese" is such an ugly word to me. I think it's because it rhymes with grease. Have you ever seen one of those infomercials for the next best thing in weight loss, where the evangelical and oh-so-thin host holds up a jar containing a pound of chicken fat? Or then there's the fact that my total weight loss goal of 53 pounds means I need to lose an eight-year-old child off my body. Imagine that childbirth! I think I'd endure it though, in preference to a year of hovering starvation. There's a reason why the word "diet" contains the word "die."

I did not know I counted as "obese" until I tried a body mass calculator, which assigned me a BMI of 30 and gave me the dread news. Luckily, if I lose just 5 more pounds, I will drop into the "Overweight" category.

My body and I have always been at war. I became a plump child when my parents divorced: When you look at a series of school pictures, you can see the exact year when I blimped up. And because of the cruelty of children, my avoirdupois branded me an outcast in gradeschool, the classic last-pick-for-kickball. At thirteen I decided that weight loss was my ticket to social acceptability. This plan did not work out as I'd hoped, but I did acquire anorexia nervosa. I survived, but became bulimic, and that condition lasted well into my twenties. After that I became a serial Weight Watchers member, cycling through the same fifty pounds. I was thin when I got married, but infertility and its associated stress eating put me at the high end when I conceived Madelyn.

To my horror, last week while searching for some information for Maddy, I found links like this one that make me fear my obesity and gestational diabetes are the cause of Madelyn's spina bifida. I have not cried so hard since long before her birth, and I'm heartbroken that I didn't know of this link before trying my donor cycle. It is new research.

My obstetrician and I had talked about the health risks of being overweight during pregnancy (I did not realize that I was "obese" even then) and I worked hard to keep my weight gain low. I had a net gain of only 12 pounds or so during pregnancy and after I delivered, I was 10 pounds below my pre-pregnancy weight. Yet I developed gestational diabetes anyway. And now I find that my gluttony and lack of discipline may have harmed my child.

There are lots of women far heavier than me delivering healthy babies. I am short; on a taller woman, my extra pounds would not qualify as obesity. I can still (barely) shop in regular stores for clothes. And yet the more I learn about the risk factors for spina bifida, the more I realize that I unwittingly brought many of them with me into my pregnancy. Besides obesity, there is drinking tea, which I did -- one cup a day, with the permission of my doctor. That one has been challenged, but there is new work going on to indicate that compounds in tea might interfere with the metabolism of folic acid. There is even the fact that I am of Irish extraction: "Our epidemiologists, in studies in Ireland where the prevalence of spina bifida is particularly high, have identified a specific gene defect that predisposes women to bear children with spina bifida, especiallly if their diets are low in folate."

And then there is the torturous fact that I can't know for sure whether I took my prenantal vitamin every day. For anyone still reading this blog who wants to do a donor cycle, I highly advise that you make a little "X" on your calendar every time you take your vitamin. That way, if spina bifida should befall your child, you will not have the folic acid question to reproach yourself with.

All of this has made me so sorrowful for Madelyn. She is the sweetest, happiest little being who has no idea as yet of what's ahead of her, and now when I look at her, sometimes my eyes fill with tears and I have only these words: "I'm so sorry, my dear one." I do not yet know how I will live my way through this intense guilt. I have made tentative inquiries of the few spina bifida moms that I know, but no one seems to be suffering as much as I am -- or, they don't want to share it. Every doctor, every friend and family member, and certainly my husband, have been telling me: "It's not your fault." But I know in my heart that I did not do my best for Madelyn. I'll never really know what caused her condition, but I suspect it is simple: Me.

Feeling this, the most attractive option available is to crawl into a hole and pull it in after me. I don't deserve to be Madelyn's mother. And yet, such as I am, I am what she's been given. I have to do my best for her now, even if I failed in pregnancy. I must lose this hated weight, once and for all. I owe it to Madelyn, both as expiation and more importantly, for her health. Obesity is a particular risk for spina bifida children because mobility and thus exercise are difficult for them, and it's well known that obese parents have obese children. How can I ask Maddy to control her weight when I'm a living example of someone who does not?

And I want to lose it quickly, or at least more quickly than the plodding one to one-and-a-half pounds a week that I used to lose on Weight Watchers. My babysitter has had much success with a low-carb diet, but I am frustrated with it. After the initial drop most people get from a new diet, I crept down 8 pounds and have stuck there. The diet is hard for me to follow because if I could, I'd eat only carbohydrates; I was ovolacto-vegetarian for years. The only thing I like better about this diet that Weight Watchers is that I'm hardly ever hungry.

This week I'm going to try to drink a lot more water and start some mild exercise, and see if that will "goose" my system into losing weight. Madelyn is a far better motivation than a new wardrobe or the compliments one gets for being thin. I want to do this for her. And for myself.

But mostly for her.

On being a working mother

Ah, the Mommy Wars. They rage unabated in my little patch of suburbia, let me tell you. I went to a friend's card party last year and someone asked sweetly, "And you're still working?" This, I hasten to clarify, was before Madelyn was even conceived. I instantly felt like a second-class wife because I had not quit my job the instant I spoke my vows, in order to create and manage a picture-perfect home for Ward. Er, for my husband. I wonder what they'll say when I show up at the next soiree with an infant, and still admit to the crime of full-time employment. Probably: "Child abuser!"

Not that I care. To me, the Mommy Wars are a social annoyance: I don't like putting up with condescending folk who make thinly veiled slurs at those who work or those who don't. I don't like feeling like I have to justify my life choices to anyone. But, nosy Parkers aside, the real issue is whether I believe I'm doing the best I can for my child, and what exactly "my best" means.

I'm not one of those who works for self-worth or identity, nor do I feel that changing diapers and wiping spit-up is a waste of my talent. I see nothing wrong with feeling that way, and making choices along those lines, if your career is part of who you are -- but that's not me. Even though I enjoy what I do and am reasonably skilled at it, my job is something I do to fund the rest of my life. I suspect this is why I had such a desperately hard time accepting donor egg as my path to motherhood. I saw my genetic children as my legacy in this world, and never imagined making my mark professionally or artistically.

Back in the day, my husband and I had talked about me staying home for a few years while "the kids" -- ha! -- were small, since we blithely assumed we'd have no trouble adding two or even three to our family. But then, in this game of pick-up sticks that I call my life, the straws fell awry. Anybody who says, "You could afford to stay at home with Madelyn if you were willing to make sacrifices" has not experienced two years of unemployment for one spouse concurrent with infertility for the other. At the same time our expenses were skyrocketing, our income was halved.

So what did we do? It's the American Way: We borrowed. We have a huge infertility loan, not to mention a special-needs child's medical bills and other assorted obligations. When I catch a whiff of scorn -- or worse, pity -- from someone who learns I have a spina bifida baby and yet have kept my job, I want to snap, "I'm not buying lattes and having pedicures with my paycheck, sister!"

I tell myself that digging out from under this avalanche of debt is part of being Madelyn's mother; I'm helping to take care of her, and of our family, financially. But I'll admit to feeling like a fraud as I write. Madelyn doesn't know that diapers are twenty-four cents each at Wal-Mart or that it's past time to start her college fund. She only knows that she wants her Mommy. And God, I want her too; every precious minute I can get with her.

Could we survive and inch our way to solvency on one income? Maybe. Probably. About twenty years after it came time to retire, and on a shoestring, house-of-cards basis. Last week at spina bifida parents' group, I learned that the special shoes these kids need as toddlers can cost up to a thousand dollars a pair. Both kids would be on their own for college. And I have real fears about the toll it might take on our marriage. We already have stepfamily issues and special-needs parenting issues; what would it be like if we shouldered again the financial strain we just emerged from?

I think being unemployed left scars on my husband. A guy puts in ten years or so on the job and he tends to take that paycheck for granted: If I get in the car every day and drive there, they'll continue to fund my life. Then one day his company says good to know ya, don't let the door hit you in the ass on the way out, and suddenly his family's survival is in doubt. How many of us really have six months' worth of expenses in the bank, like Suze Orman insists we must? Involuntary unemployment shakes a person (and a marriage) down to the core; it leaves you with a profound, Depression-era sense of insecurity, especially if you have children to support and a heavy load of medical bills. It was a wretched, dangerous time for us.

And right now I have the sweetest of all deals. Four days a week, my commute is twenty seconds up the stairs, because I am privileged to work from home. I have a full-time babysitter who has learned to catheterize and who does a great job with Madelyn's "play" therapy. Her memory of when it's time for Zantac is better than mine, and I can run downstairs almost anytime I want for a hug and kiss, or if there's a problem. I only go in to the office one day a week, and -- guilty little secret here -- I like it. I know Madelyn is well cared for, and I get to dress in something besides baggy sweats, make lunch dates, and talk grown-up talk, one day a week. I am deeply grateful to have this option; there are many mothers out there for whom the Mommy Wars are as far removed as the Civil War...they have to leave their kids with someone every day and go to work. Period. The choice itself, to work or not to work, is a luxury too many women overlook.

So, much as I would love to chuck my job and hire myself as Madelyn's babysitter, right at this moment my gut tells me that would be a selfish choice. My child is happy and safe, and her needs are met. I am not "missing" anything. I admit to a twist of unhappiness at yesterday's physical therapy appointment, when it seemed like my babysitter's smiles were more attractive to Madelyn than mine. But if I quit now, I'd be doing it more to serve my own needs than Madelyn's, not to mention putting a crushing load on my husband and placing our future in jeopardy.

The future may bring different choices, as Madelyn's needs change. I'm toying with the idea of going part-time so I'd have one day a week to do her various appointments without stressing the lost work time, and still bringing home most of my current salary. We'll see what happens.

Happy holiday weekend, everyone. Weight loss report: 8 lbs down, and stuck! Got to get some exercise.

It's always something

Warning: The content of today's entry might strike your ear as, well, whining. I'm Mommy to a sweet, beautiful baby when so many of my infertile compatriots are still struggling toward motherhood. I do know how very lucky I am to have my Maddy.

But.

It really is always something, with a special-needs child. Maybe with any child -- my experience is limited, since Madelyn is my firstborn. But there always seems to be some issue we're struggling with. Right now we're getting unusually high catheterization volumes, meaning she isn't wetting her diaper on her own as much as she was. And she's having trouble moving her bowels; we get either too much or too little.

Bowel and bladder problems are common and we were warned about them, but nobody told me how aggravating it is to figure out what's wrong, what to do about it, whether what you're doing is working or not working, and to communicate same to the nurses, who will talk to the doctors, who will talk to the nurses, who will get back to you on some unspecified date, all while your child is suffering. And if anyone had told me that my husband and I would have half-hour conversations about whether a diaper is "damp" or "wet"--!

So I'm on the phone all the time with the urology nurses, and with neurosurgery too, because it can't just be as simple as dealing with the diaper issues and moving on. No, changes in bowel and bladder function can be symptomatic of a problem with Madelyn's spine. Every little question requires a long game of phone tag and most often a trip to the pediatrician's office, just in case. In case what, you ask? In case Madelyn's fussiness and vomiting are symptomatic for shunt malfunction. (Answer: No, she's got the flu, you foolish Mommy.) In case her huge cath volumes and constipation are symptomatic for spinal cord tethering. (Answer: Even if it is, we won't do surgery until she's four to six years old. Talk to Urology and don't darken our door until August.)

It is always something. We're muddling along, and we get good news now and then -- her sleep study showed greatly improved statistics for her apnea; her vocal cords are completely normal, and so on. But then we'll get a diagnosis of torticollis and it's off to physical therapy once a week, where the advice is frustratingly vague: "Hold her in the opposite arm when you feed her."

Or it will suddenly occur to me that the medications she was started on in January were dosed according to her weight then, when is roughly half what she weighs now. No one has followed up with us on those medications. So I'll start new games of phone tag, and it will turn out that yes, she should have had a new dose of the antibiotic. You know, the one that is protecting her kidneys from permanent damage. "Oh, didn't Dr. E--- talk to you about that?"

No. He didn't.

My stomach is churning even as I write. I can't find words adequate to describe the quality of the worry that I feel, all the time. I've written before that worry is like little rat teeth. But this worry--that I'll overlook or mismanage something crucial to my baby's health--is like a millstone sitting on my chest, slooowwly crushing the breath out of me. Because I've missed things before. I didn't recognize stridor for what it was. And when she was extra-sleepy that one weekend, no alarm bells went off -- I remember being happy that she was sleeping longer than normal, so I could get some sleep myself. Madelyn got early, effective treatment for her partially clogged shunt (sleepiness) and her brain stem compression (stridor) through sheer, dumb luck. Not through her mother's vigilance or knowledge.

It haunts me. I know it'll happen again...other than stridor, the symptoms we are to watch for are just too vague, and too similar to normal baby behavior, for even a watchful parent to easily catch (fussy, sleepy, spitting up, etc.) Here's the bit that drives me crazy: You'll be talking to a doctor, trying to describe how you think she's fussy, but not too fussy, and she's maybe a little sleepy but it's hard to tell, and she could be teething, but there was that weird sound she made.... The whole time you're expecting him to excuse himself and call the cops to report you for munchausen by proxy because this is the third visit to his office in a month.

He'll listen to your whole ramble and he'll say, earnestly, "Well, you know your baby. Do you think this is unusual for her? The Mom is usually right, you know!" And here he grins at you, to show that he's on your team.

Whereupon I want to pounce on him, grab him by the tie, and thump his head against the nearest hard surface, "Look, Doctor, I brought her in here to get your educated opinion, not to tell you mine. If I thought she had a shunt malfunction we'd be at the hospital, wouldn't we? Instead we're screwing around at the pediatrician's office because I don't know what I'm doing. So if you wouldn't mind not adding to my load of guilt and my doubts about my mothering ability? And if you could tell me whether my daughter needs another shunt revision surgery so I can get that on my calendar? Thanks."

Grrr.

I wish I had a ten-spot for every time some doctor has said some version of the above to me: that I know Madelyn best and so I should tell them when there's a serious issue. It's even printed in our spina bifida notebook they sent home from the hospital. On the face of it, it sounds great; the professionals are supposed to pay attention to the child's closest caregiver. But in practice, it's not so great. You go in with vague concerns and -- ping? pong! -- you get vague answers back. And as a bonus you get a reminder that if something is wrong and it isn't identified, it's your fault. Because of course, the mother ought to know.

And then there are the days when I must don my Billing Clerk hat: I actually laughed out loud when I got the hospital bill for our January adventure...before insurance grudgingly coughed up, we owed nearly twice the value of my first condominium. Or, my Scheduling Clerk hat: There is a yellow post-it on the side of my monitor that reads "M. FU ears, sleep, PT? Ask." It is in my handwriting. Hmm. My ways are deep, very deep, and none shall know them.

So, it's always something. And I worry. It's slowly getting to me...I'm irritable, scatterbrained (more than usual). I've started waking up with an excruciating headache every day, and I have finally twigged to the fact that I'm grinding my teeth at night. This has happened randomly in my life as a sort of exam-week thing. But Maddy's only six months old and I've got what, about twenty years worth of "exams"? I've got to learn to cope with this.

Tonight we're going to our first spina bifida parents support group. I am trying not to expect too much...I'll probably be too shy to vent much, at first. But I am dearly hoping somebody, sometime can tell me how to cope with this steady, grinding pressure without falling apart. I need help.

Sweet Maddy

Our darling baby is thriving, and keeping Mommy and Daddy very busy. She wakes up every morning at about six a.m., a half an hour before my alarm is set, and starts making her sweet baby sounds. Not crying, just talking and singing to herself. So each day begins with Madelyn's little voice in my ear, and I have never been so eager to get out of bed and catch the first smile of the day. Maddy learned to smile about a month ago, and like all babies she smiles with her whole body. Her little arms wave and her eyes light up, and of course there's that gummy grin.

Medically we are just dealing with the everyday challenges. Like all spina bifida kids she has bowel and bladder issues that we're trying to figure out, and she has started physical therapy. Today she rolled over all by herself! Maddy hates "tummy time" so I wasn't surprised to see her finally roll over, just to get off her stomach. Right now we're working on building flexibility and strength in her neck; she's not as strong on the left as the right, and it's throwing her balance off as she tries to learn to sit up. It won't be long -- she does "baby crunches" all the time, she's so eager to be sitting up.

I asked about her legs and the therapist says she'll never been in a wheelchair! She might need some bracing for her ankles, but her legs are very strong and she can flex her feet and wiggle her toes. The therapist says we'll have to wait for more milestones before we see what her mobility problems might be.

In a couple of weeks we start solid food...and I cry every time I buy a new size of Huggies. It all goes so fast. And every day I love her more...it's laughable, that I ever worried I wouldn't love her because she came from a donor egg. She's my own sweet dear, and I can't imagine life without her. So many people have told me that she looks just like her Mommy, and I just give them a satisfied smile and say, "Thank you."

As for me, I'm getting back into the swing of things at work. I found a babysitter to come to our house every day and I work from here, so my commute is 20 seconds up the stairs, and I can go down and visit Maddy whenever I want. It works well because the family needs my salary, especially with Maddy's medical bills in the mix, yet I don't miss anything with her and I can supervise her catheterizations. I am incredibly lucky to have this arrangement. Someday I might want to go part-time because Maddy does have a lot of doctor appointments and I end up working nights to make up the time, but what we're doing is working for now.

My big goal now that I've got the Mommy routine more or less under control, is to lose some weight. But I am lazy and sedentary by nature, and I've got a husband who thinks I'm gorgeous at any weight -- yes, I do know how lucky I am! -- so it's hard to stay out of the Oreo package. Well, it's summer and we'll get out for walks. I'd like to be twenty pounds thinner by the end of August. (There, I have made a public commitment...we'll see how it goes!)

Those eyes have it!

Madelyn can see. Madelyn can see.

She's sleeping now. I just gave her a bottle. Afterward I sat in the rocker and held her for a long time, listening to her baby grunts and squeaks; loving the way she snuggles into the curve of my arms, as if I'm all she will ever want or need. And I let the dark future I'd imagined for her dissolve and fade away. Madelyn can see.

The ophthalmologist said she is, in fact, delayed -- not quite where she should be for a 10-week-old. But he said, "I'd more surprised if her vision were normal, given all that she's been through." Her eye structures and optic nerves were fine, and he said she does react to light with "primitive responses."

He thought there were times during the exam when she was focusing on faces and objects. (My husband and I really don't see this in here, but obviously this doctor has more experience!) He said we should find ways to stimulate her vision using high-contrast toys. He also said, "I've seen hundreds of blind babies, and she doesn't act like she's blind."

So, we'll have another checkup in two months, and meanwhile go on to the next crisis--

Kidding. Right now all is well. And, th-th-th-that's all for tonight, my wonderful friends. I've got a baby to cherish.

I'm afraid

That's an understatement. I'm climbing the walls, I'm so scared and heartbroken.

I think Madelyn is blind.

A couple of days ago after I had given Madelyn a bottle, I tried to get her to smile at me. At nine weeks, she ought to be starting "social smiles." I put my face close to hers and chanted, "Can this baby smile for Mama? Let me see your smile, sweet Maddy!"

Not only didn't she smile, she didn't even seem to see me. I tried the thing I've seen the professionals do, where you pass one finger back and forth across the baby's field of vision, to see if her eyes would track the motion. They didn't. Hmm...

I asked my husband what he thought, and he agreed that it seemed odd. We both thought we remembered Madelyn tracking with her eyes, prior to surgery. He tried using a lighter (of course, I'm like, "Don't set the baby on fire!") in a darkened room to see if Maddy would track that. Again, she didn't seem to see the light at all. But, her pediatrician had said she would likely be delayed in her milestones due to all that she's been through, and very young babies can't see very well. We weren't sure.

So yesterday we saw Madelyn's neurosurgeon. I had called and asked to move Maddy's follow-up appointment earlier because she seemed to be sleeping a lot, and we were hearing more stridor when she cried, making me fear another shunt malfunction. But the CAT scan of Madelyn's head showed improved ventricle size. The neurosurgeon also tapped the shunt to verify that the fluid was flowing appropriately. The fluid was yellow-colored, which isn't a good thing, but the doctor said that since Madelyn doesn't have a fever it's probably not an infection. When blood breaks down, its proteins can cause a yellow color in clear fluid, so the color of the spinal fluid is probably a post-surgical, transitory thing. They'll culture it to make sure.

Of course, I asked the neurosurgeon about Madelyn's vision. She tried the tracking thing as well -- no joy -- and then she did another test, hard to describe: She made her hand into a kind of "stop" position, palm flat and fingers turned up -- just like one of the Supremes backing up Diana Ross! -- and then pushed her hand straight at Madelyn's face very fast, stopping just short of her nose.

Madelyn didn't blink.

I kind of knew then. The neurosurgeon wrinkled up her brow, and muttered, "Madelyn, Madelyn..." in just the same tone I use when I'm worried. Then she asked her nurse practitioner to get us an opthalmology appointment. She was very calm about it, but still.... All last night I tried not to think about it, but it was there, under the surface.

Today I had a few minutes to Google. If you enter "blindness spinal surgery" you are, if you're me anyway, in for a shock. Of the infinitesimaly small number of people who get post-operative blindness, a high proportion of them have had spinal surgery. Also, anemia and a long time on the table are recognized risk factors, both of which Madelyn had. I tried off and on all day to get Madelyn to see me, and I don't think she can. I think she's stone blind.

By mid-day I hadn't heard from the hospital, so I called and applied the thumb-screws, in my nice-but-hysterical-don't-mess-with-me way, and got an opthalmology appointment for Monday at 9:40 a.m. That in itself told me there was a problem. You can't get in to see a doctor that fast anywhere at that hospital, unless someone on the inside called them up and said, "Hey, can you please see this baby who's gone blind since we performed surgery?" The ass-covering has begun.

I feel sick. I'm so afraid. How much more can we take? How much more does this sweet little baby have to suffer? I hate God today. I hate myself. But I love my girl, so much. I know other people have gone through things like this -- I know -- but that doesn't make this agony easier to bear. I can't look into those big brown eyes without sobbing.

Maybe I'm crazy, maybe it's all a mistake and she's just delayed because she's had so many surgeries. But I don't think so. We'll know Monday. Please pray for us.

Hard times

Hello Everyone. I see that thanks to Wessel and a caring offline friend, some of our latest news has made it online. I did not mean to leave this blog high and dry...but like a lot of first-time mothers, I had no idea how all-consuming it is to care for an infant. Now I know why my friends laughed at me when I talked about the "projects" I was going to get done around the house during my maternity leave!

Those first few weeks after we came home from the hospital were surreal. It seemed that no sooner had I finished feeding, catheterizing, diapering, and breast pumping...than it was time to start the whole thing over again. It was a labor of love for sure, yet labor it was. I got so sleep-deprived, I was hallucinating that the baby was in bed beside me one night and kept saying, "Here she is" to my husband and patting the covers. After that, he started taking one "night shift" so I could get some rest (grin).

Still, Madelyn seemed to be thriving and we had no idea what we were in for when we went on January 9th to Children's Hospital for our first myelomeningocele clinic. Spina bifida children have to see numerous doctors, and clinic day allows us to schedule all the visits the same day. The previous Thursday, we had noticed her making a sort of "whistling" sound when she was crying, but it went away when she calmed down and was not too loud, so we decided to wait until clinic to see a doctor about it. In fact, we'd nearly forgotten it and I was telling the pediatrician about Madelyn's severe diaper rash, when my husband remembered to mention the whistling sound.

To say that the professionals were concerned was an understatement -- they had Madelyn's neurosurgeon in the room in just a few minutes, and before we knew what was happening, Madelyn was being admitted to the hospital for a stay that ultimately lasted two weeks and three days.

It turns out that the whistling sound is called stridor, and we should have been watching for it all along as a symptom of Madelyn's Arnold Chiari II malformation.

The majority of spina bifida children have Chiari II, in which the brain stem extends past the base of the head, down into the spinal column. Of those children that have Chiari II, most are asymptomatic, and some may never know they have the condition. However, Chiari II is extremely scary for a spina bifida infant because, when the baby does have symptoms, these can be life-threatening. In infants, the symptoms can include vocal cord paralysis (which causes stridor) with blocked airway, swallowing difficulty, and respiratory problems. In older children, symptomatic Chiari II is not usually so serious, but it is the leading cause of death for spina bifida infants under the age of two years.

This was one of the main reasons why I wanted fetal surgery for Madelyn, since early data regarding the surgery suggested that closing a baby's lesion in utero might reverse the development of the Chiari II malformation in the fetus. This never happens in a full-term infant whose lesion is closed after birth, so if they prove this benefit of the surgery it will probably be routinely offered to women pregnant with spina bifida babies. But as you know, I failed to get the surgery for Madelyn and now she has symptomatic Chiari II. Have I mentioned the word "guilt" on this blog yet?

Anyway. Madelyn's first tests were to see whether her shunt was working properly. Scans did not show any significant enlargement of her ventricles, but our neurosurgeon is very thorough and chose to "tap" the shunt. This meant putting a needle through the skin of Madelyn's scalp and into the shunt, to see whether the fluid being drained by the shunt is flowing properly. In Madelyn's case, the fluid was flowing very slowly. The doctor theorized that fluid back-up was causing downward pressure on her brain stem, resulting in the stridor symptom.

So, on Tuesday night Madelyn underwent a "shunt revision" surgery, which is basically exploratory: The surgeon goes in to inspect the shunt and tubing to find and correct the blockage. Among those children who have shunts, this surgery is fairly common -- although unfortunately for Madelyn, kids who have one shunt malfunction tend to have more than one, so we can expect to repeat this surgery again; perhaps many times in her life. Our doctor found that the small tube leading from Madelyn's brain to the shunt had clogged, and she was able to clear it.

The next few hospital days were spent waiting to see if the shunt correction would resolve Madelyn's symptoms. She was given steroids to decrease swelling around her brainstem, in hopes that this plus the shunt surgery would reverse her symptoms. The other alternative was a cervical laminectomy, in which pieces of bone would be removed from Madelyn's cervical vertebrae (making them a "U" shape instead of an "O" shape) in order to "decompress" the brainstem. This is a serious surgery with numerous risks, especially in an infant, and we wanted to avoid it if at all possible.

Meanwhile additional tests were done, and other problems surfaced, all related to Chiari II compression of the brain stem. Madelyn had a swallow study that showed she was aspirating some of her food into her lungs; a chest x-ray showed an area of aspiration pneumonia. Swallowing difficulties are a common symptom of brain stem compression. She also has gastric reflux, where her food "backwashes" up into her throat, causing pain and regurgitation.

A scope of Madelyn's throat showed the partial paralysis of her vocal cords, which was of great concern to us. As it was, Madelyn had a sufficient airway though she made a racket while breathing; but if the symptom progressed and her vocal cords became paralyzed in the "closed" position, she might need a tracheotomy to breathe, or in the long-term a cordectomy, where they would remove one vocal cord to provide a better airway. Worst of all, one night a pediatric resident noticed long periods of sleep apnea, where Madelyn would stop breathing in her sleep for as long as eight seconds.

It was all very frightening, especially when I started reading about symptomatic Chiari II on the Internet and saw some very scary statistics. One source said that about 23% of infants with severe symptoms die before age 2, mainly from respiratory arrest or pneumonia. There was one day that I spent mostly in tears, as the bad news came in waves and I became desperately, if irrationally, afraid for Madelyn's life. I was much relieved when the neurosurgeon told us that in her view Madelyn was a "moderate" case for symptomatic Chiari II, and that "She's not one of those I'm afraid I'll lose in the first couple years." My father, a pediatrician, was worried enough that he drove up to see us from several states away...I was glad to have him with us, but scared that he was scared enough to make the drive.

After we'd been in the hospital for a week and four days, the neurosurgeon said we would not need the decompression surgery. There had been some improvement in Madelyn's stridor from the shunt surgery and steroids. One last test result remained to come back -- a sleep study done to measure her apnea. My father had gone home, and I was packed and waiting for my husband to return from the pharmacy where he was filling Madelyn's prescriptions, when a couple of nurses stopped me in the hall and said, "You're not going home tonight."

The sleep study had come back showing that Madelyn had over 120 apneic episodes during the night, and the pulmonary doctors were strongly urging the neurosurgeon to perform the decompression surgery. She consulted with us and after asking a lot of questions about the potential risks, benefits, and outcome, we consented to the surgery. I spent hours crying and cradling Madelyn. Could we really lose this child we'd struggled so hard for and loved so deeply? I knew that we could. Life truly can be that cruel, that pitiless.

The next day was fairly awful -- we were an "add on" to the surgery schedule, meaning they would take us whenever they got a free operating room -- and Madelyn had to be "NPO," or "nothing by mouth" all that time. She's a baby who likes her food; between hunger and the six "sticks" it took to start her IV, she was a very unhappy baby by the time they came for us in early evening. It was the hardest thing I have ever done, giving my baby into the arms of the nurse to be carried to the operating room. I was so afraid I would never see Madelyn again.

My wonderful father turned his car around and drove 600 miles again to be with us, arriving just as we settled down in the waiting room. My mother came as well -- she's only an hour or so from us -- so I had lots of support to get through the wait. They'd told us the surgery would last two to three hours, and between snacks and small talk and CNN on TV, I did all right for the first two.

Then I got out my worry stone, and sat down in a rocker where I could work off some energy. At the three-hour mark, I took my mother's worry stone so I could have one for each hand. And at three and a half hours, I was going bughouse. My husband looked into my eyes and said, "Want me to go check?" I just nodded. By then it was late evening and the volunteer manning the waiting room had gone home, so my husband patiently knocked on a connecting door until someone came, and then asked for a status. The word came back that Madelyn was doing fine, and they were "closing the dura."

We thought that we were home free at that point, but the surgery lasted another two and a half hours. By the last bit I was fighting back hysteria; I was sure something had gone wrong and we had lost Madelyn. My husband, stoic that he is, told me later that he had thought the same thing. Then the phone on the volunteer's desk rang. We all looked at each other...should we answer it? They'd told us a nurse would come out to us with news. It stopped ringing, then a few minutes later rang again. This time my husband grabbed it.

Have you ever had a moment when everything slows down; when your mind takes an indelible snapshot of all that you see and hear and even smell around you, and you know that your life will be forever divided into the time before that moment, and the time after? I'll never forget watching my husband's face as he listened, and knowing that Madelyn was safe.

The surgeon came out to talk to us and explained that the surgery had taken twice as long as normal because there was a great deal more compression of the brain stem than she had anticipated from the MRI images. She had had to remove bone from the first five cervical vertebrae, not just the first three. But she said, "That's actually a hopeful sign, because the more there is to decompress, the more hope there is that the surgery will relieve Madelyn's symptoms." One grim statistic she'd given us was that only 60% of children who have the surgery see any benefit from it.

Our baby looked so tiny and fragile in her bed in the pediatric intensive care unit (PICU). She still had a ventilator tube down her throat, and I've never seen anything so heart-wrenching as that little face scrunched up to cry, with no sound coming out. But her little arms were waving and her eyes were open. We were given a sleeping cubicle on the floor -- just large enough for a twin bed and a couch -- and in the PICU Madelyn had her own nurse, so we felt safe leaving her to get a few hours' sleep. By the next morning she still needed the ventilator and her heart rate had dropped a few times in the night, so they decided to keep her in the PICU that day. It seemed to be taking her some time to throw off the anesthetic, and she did seem to be in some pain -- she has a long incision down the back of her neck.

The next night my father volunteered to stay with Madelyn on the floor and my husband and I got to spend a night at a nearby hotel that offers a "caring rate" to families with children in the hospital. It was heaven to sleep in a "real" bed with a "real" shower! Later that day Madelyn had improved enough to move back to our room on the pediatric neurology floor, and her uncles came to see her. They were surprised at how good she looked for a baby who'd just had brain surgery!

We stayed in the hospital three more days for monitoring, and Madelyn was amazingly improved -- we heard stridor only very occasionally, and she was more awake and alert than she'd ever been. A follow-up swallow study showed that she was no longer aspirating her food, and the doctors felt completely safe sending her home with us.

Unfortunately, since we've had her home we've heard the stridor coming back a little bit, and we're a little worried. We have been told it could be from surgical swelling and we should just keep an eye on her...but last night I was so stressed out, I felt short of breath. It is a crushing load, knowing that if I miss the early symptoms of a shunt malfunction or of brainstem compression, Madelyn could be permanently harmed. Or worse. In early stages the symptoms are so subtle. Lethargy, irritability -- how much sleep is too much? How much crying is too much? And the stridor is hard to quantify because it comes and goes.

Somehow I'm going to have to find a way to mother this child and keep her safe without all the joy going out of it. And my return to work is only two weeks away. Please send us prayers if you can.

Our baby is here!

She is my heart. She's so beautiful and sweet. She was born November 28th at 10:13 a.m. and weighed 6 lbs, 14 oz. A big girl compared to the other babies in the Neonatal Intensive Care (NICU).

We had a lot of problems since I last posted...I spent 10 days on bedrest and in the hospital because my amniotic fluid kept dropping no matter how much Evian I forced down. I was in the hospital for Thanksgiving and for my birthday, so that was a little sad! But my darling husband brought me a carryout Thanksgiving meal from a local restaurant, so it was not that bad. Madelyn is worth anything!

The danger with low amniotic fluid is that without a lot of fluid to float in, the baby might get tangled in the umbilical cord and strangle, so they put me on IV fluids and kept the baby monitor on us a lot. Madelyn sailed right through...her heart rate was always good.

But, between low amniotic fluid and gestational diabetes, my wonderful OB finally decided we could wait no longer, and Madelyn seemed good-sized. They measured her at 5 lbs 14 oz and she came out a pound heavier, so it shows that those ultrasounds aren't always accurate. Yet my OB said there was hardly any fluid when they delivered Madelyn by c-section, so we made the right decision to let her be born early. Madelyn had no premie issues at all even though she only got a 7 on her Apgar. (My OB said the neonatologists were being "stingy.")

I was very afraid of the c-section and the needles in my back for the spinal...and wouldn't you know it, the spinal didn't work at all! About 15 minutes after it was administered I could still wiggle my toes and feel them sticking me with pointy things, and the anesthesiologist said she never tries twice, so I had to be put under. They kicked my husband out, and he was so disappointed because that meant he wasn't there for the birth of either of his babies. But the operation went fine and I was awake and talking in full sentences and looking at the digital camera within 5 minutes of them finishing. The OB said, "We pumped you full of stuff and could hardly keep you out...you wanted to see your baby!" I told her it was my Irish liver. :D

I got to see and touch my sweetie just once after the birth, when they wheeled her out for transport to the Children's hospital NICU. I sent my parents and my husband with her and dozed the afternoon away with my morphine drip, but by 6 p.m. they took out my catheter and hoisted me into a wheelchair, and then my parents and my husband somehow got me downstairs and into and out of a car so I could go see her. She could not be picked up but I got to hug her and touch her. I cried of course, and I only lasted 45 minutes before the pain and sleepiness got to me, but I did get to see and touch her the same day she was born.

I spent 3 days in the hospital after surgery, and got to see her each day, and I've been to the hospital every day since then for at least half the day. I have been able to pick her up since a couple of days after her birth and have even breastfed a bit, though my milk is slow in coming in (they say that is common after a c-section and when your baby isn't with you to stimulate breasts and hormones). And just as I wrote, that moment when I could lift her to me and kiss her sweet head was the most perfect moment of my life. I can't believe I wasted one instant worrying that I would not love my baby! She's mine, and I love her more than anything. It's a tidal wave of love...it didn't grow slowly...it filled me in a rush that was both sweet and painful.

Madelyn had her back closure surgery and her shunt put in, and she did perfectly fine for both surgeries. The opening in her spine was very small and she moves her legs vigorously, and her hydrocephalus was so mild they waited over a week before deciding she did need the shunt. The only big setback we've had is that right after her birth, she was able to void urine on her own and we were ecstatic...but after her back closure she totally lost that ability and now has to be catheterized every 3 hours. We have learned to do it although it scares me -- I'm afraid I'll hurt her though the nurses say it's impossible -- and I'll do anything I have to for my sweet girl.

Last night my husband's mother got out some old albums of him as a baby and it is Madelyn's face in those 41-year-old pictures! She is such a pretty little baby, though my husband said, "I hope she doesn't look exactly like me. I'd make a really ugly woman."

Unfortunately my breastfeeding hasn't gone so well...I can only produce about 2 ounces a pump. But my baby is a champ...if there's food in it, she doesn't care if it's breast or bottle, Isomil or Mommy milk.

Right now, I have to go to Bethesda hospital because I've gotten a high fever and need some antibiotics. I'm crushed I can't see my girlie for a couple of days...but of course I need to protect her. More after I bring her home, and Love to all who are still interested in our story.

We have truly had a "happy beginning"...not an ending...it's a new life for Madelyn and me, and her father and brother too.

Madelyn Faith

Hello everyone. I cannot believe I have allowed so much time to go by since I updated the blog. I am in much better spirits than when I last wrote -- although much worse health; more on that later -- and as you can see from my title above, we have settled on a name for our baby girl. "Madelyn" because I love the name, and "Faith" because we have to believe in her, and all the good things that will come into her life, to find the courage to be her parents. Her father says he is going to call her Maddy for short, but I'm calling her Madelyn until she tells me not to.

I spent about a month hibernating after we got back from Philadelphia. Because I had reached the point of helplessness, with nothing constructive that I could do for my baby, I turned to shameless escapism. I slept as much as I could manage. I put away my spina bifida books and stopped compulsively googling. I spent entire weekends reading one book after the other. I worked on a web site I want to launch someday about one of my hobbies. I let my husband bring home pints of ice cream entirely too often, though it didn't show up on the scale (not sure how that happened). Anything and everything that I could think of to distract my mind. I suppose it was a good thing. I believe I needed the time and distance.

But now my c-section is two months away, and my stomach is trying to take over the planet. It arrives at work three minutes before I do, and I have been gently accused of being "great with child." I have had to admit that I waddle. And then there are those mild annoyances of pregnancy. I don't think there's a single one that I haven't had: Heartburn, carpal tunnel in my right hand (from tissue swelling), back pain, sleeplessness...I could go on, but I'm boring myself.

What was not so boring was spending a couple of days in the hospital with preterm labor. My husband and I had worked in our yard on a very hot day, and afterward I wasn't feeling very well. I stayed home from work the next day with fever, chills, diarrhea, and killer back pain. When I called the doctor, she had me come to the office and discovered that not only was I ill with what we think is diverticulitis, but I was also dilated to 1-2 cm. She sent me straight to the hospital and they discovered via monitor that I was having contractions. I could not feel them except as intense back pain -- and I had been blaming that on all the yard work. It was scary to realize I'd been in labor and had not known it.

Thankfully, they got the contractions stopped with medication and started massive antibiotics for the diverticulitis. I think I also had a sinus infection starting because as soon as the drugs came onboard, my sinuses started draining. They found I was dehydrated from the diarrhea and the hot day's work out in the sun. The OB thinks that the infections or the dehydration or both caused the contractions, so now I have to force myself to keep drinking water even when I don't want to.

The day after I came home from the hospital I had another scare -- a massive cramp that I was positive was a contraction. I freaked out and went running back to the hospital, but this time it was a false alarm. The cramping was just from my diverticulitis. I was embarrassed but the doctor said it happens to lots of people and it's hard to tell the sensations apart. But I said to her, "Now I'm discouraged. On Monday I had no idea that I was in labor and I was, and today I was sure I was in labor and I'm not!" She said to relax and come to the hospital whenever I need to...but I am not sure my insurance company would agree.

Meanwhile, my doctor told me I flunked my sugar test and have gestational diabetes. I have to follow a special diet and check my blood sugar four times a day. It is almost not worth eating, except of course that I have to for the baby's sake. I'm losing weight steadily...a few more pounds and I will weigh less than when I became pregnant! But I've certainly got them to spare.

As if all of the above were not enough, about a week after coming home from the hospital I started coughing uncontrollably and having wheezing and chest pain. So back I went to the hospital for a chest x-ray (baby suitably shielded). The x-ray showed that a spot on my right lung had collapsed, and they could not agree on whether it was a mucus plug, a cold, or pneumonia. I came home with a third antibiotic for my regimen and an inhaler to ease my breathing, and orders to sleep, sleep, sleep. It got to where I couldn't carry on a conversation without being short of breath, and I had to cling to the banister to go up the stairs -- which I did as little as possible, believe me.

The bright spot through all this was that Madelyn showed no signs of distress. She is still very active and her heart rate and size are perfect for her age. She weighs 3lbs, 2oz as of yesterday's ultrasound, and we saw her wiggle her toes! She has the sweetest little face that I can't wait to kiss. We are a little concerned about her hydrocephalus -- her ventricles (the fluid-filled areas inside her brain) are up to 21mm. The doctor said the progression in size of about 2mm per month is not alarming and is consistent with normal growth of her head, but I still worry. Yet those on the spina bifida parents group on Yahoo say that similar things happened to their babies in utero, and their children are thriving today.

Lately I have been thinking how long ago and far away are my concerns about Madelyn being a donor egg baby. She is so very mine, that I can make myself sick with worry for her, and I can make myself cry with love for her. I just can't wait to be her mother.

No surgery for us

In the end, the baby qualified for the study but I did not, because of uterine problems.

I'm writing this from the Ronald McDonald House in Camden, New Jersey, where my mother and I have been staying during my evaluation for inclusion in the MOMS study. My father came with me too, which is very special for me because my parents are divorced and I haven't had many chances to be together with both of them since I was nine years old. (My husband couldn't come to the evaluation because he just started a long-awaited new job last week.)

On Monday, we had an incredibly thorough workup at the Children's Hospital of Philadelphia (CHOP). I can't say enough good things about the people there. They are a dedicated and caring group of professionals who could not have done more for me and the baby -- both to give us our chance, or to take wonderful care of us while we were at CHOP. Also, many thanks to Teendoc -- I am quite sure that without her "heads up" about us to Dr. Adzick, who leads up the team at CHOP, we would not even have been evaluated.

Initially I thought that things were going our way, because the very first test -- an ultrasound -- showed that my placenta was at least two centimeters away from my cervix. I could not believe it! Now my placenta is classified as "low lying," and I no longer have a diagnosis of placenta previa. I had also been concerned that I would not make the body-mass index limit of 35, because I am carrying a lot of extra pounds after my years of infertility treatment and failed pregnancies. But I made it with about ten pounds to spare.

However, during that same ultrasound, a few complications were found that I did not know I had until I came here. One was that the placenta has a kind of "offshoot" floating by itself, still attached by blood vessels but not part of the main body of the placenta. I have forgotten the medical term for it. They said this was a variation of normal and not much of a problem in itself, but it would further limit where they could make an incision. Also, they discovered a couple more small fibroids in addition to the large one I knew about. These were not in a place that would cause a problem, but apparently fibroids "irritate" the uterus and would place me at greater risk for preterm labor if I had the surgery.

Lastly, it looks like as the placenta grows with the baby, it might try to expand on top of the large fibroid. Apparently the risk there is of separation of the placenta and uterus at that point. Also, the baby's blood supply won't be as good "through" a fibroid than if the placenta were attached to normal tissue. Even without the surgery, there is the possibility that she won't get enough nutrients and may have to be delivered earlier than normal. Her growth will have to be followed through serial ultrasounds, which we were going to have anyway for the baby's hydrocephalus.

The doctors said that none of these by themselves would have been enough to exclude me, but taken all together, the risk of preterm labor and prematurity for the baby might be as high as 25% if I had the surgery. The consequences for the baby, if she were born before about 28-30 weeks, could be very serious. The doctors were not willing to take the risk on me.

We did not learn anything more about our daughter's condition, except that the fetal echocardiogram showed her heart is entirely normal. As we'd been told before, her lesion is at L4-L5, and she has hydrocephalus and Chiari II. The doctors said that in general terms, we can expect loss of function from the knees down, as well as bowel and bladder impairment. She will be able to have sex but without sensation, and bear children normally with c-section deliveries.

She may have learning disabilities or an IQ that is about 10 points lower than a normal sibling's might be, but on the other hand, some spina bifida children are "geniuses." To some extent, her intelligence will depend on whether she needs a shunt -- as about 80% of chlidren with Arnold Chiari II malformation and hydrocephalus do -- and how many complications she endures from the shunt. At this point her feet are not clubbed, but that could develop as the pregnancy progresses. The doctors would not speculate on how much her condition will degenerate from now until the time when she's born and can have her back closed.

So, it's over. I am heartbroken that another defect in my body has harmed one of my children. My faulty ovaries resulted in the deaths of my first two babies, and now my fibroid-infested uterus has prevented this baby from getting what she needs. Or at least, having the opportunity to be randomized into the surgery group.

The doctors and others on the team emphasized over and over again that it is just not known whether there would have been a benefit from the surgery significant enough to justify the risk of premature delivery. But I believe in it. These are brilliant doctors. If they did not think there were a benefit to the surgery, they would not be doing the study at all. The purpose of the study is to prove the benefit of the surgery so that insurance will pay for it. All one has to do is to go back and read Dr. Adzick's press clippings from around 1997, to know that he believes in it wholeheartedly. My baby simply had the misfortune to be born during the study period, and to be growing inside my defective uterus.

There is nothing more I can do to help my baby until she is born, and I am going to have to live with the knowledge that every day of the pregnancy, her condition may grow worse. I see her little legs moving on the ultrasound screen...her feet even flex, which I was told is rare for a spina bifida child...and it's an agony to know that by the time I deliver her into the hands of people who can help her, she may not be able to do that anymore.

I am told that I should take comfort in that I did my very best that I could for my little girl. But what is a mother to feel when her best simply isn't good enough? I suppose I had better figure that out...because I am sure I will fail her again and again in the future, no matter how hard I try. Maybe that's something all parents have to face, whether their child is disabled or not.

Thank you all for your prayers and good wishes. It means a lot.

Going to Philadelphia

Now, don't get excited everyone. But, I'm thrilled to report we've been cleared to go to the Children's Hospital of Philadelphia (CHOP) for evaluation to see if we qualify for the fetal surgery that we want for our daughter. We are by no means guaranteed to get into the clinical trial, much less get the surgery -- but we are a step closer than I thought we would get.

I thought we were definitely out of it once my placenta previa was confirmed, but the coordinator of the MOMS trial sent my ultrasound images to one of the surgeons to take a look. He said that my placenta previa looked "marginal," meaning it is right at the edge of my cervix but not covering it. (This makes me laugh because so far I've been told that this placenta previa is "complete," then "partial," and now "marginal." That's all three kinds.) The surgeon said that the placenta might move far enough from the cervix that I would qualify for the study, and it was worth the trip to Philadelphia so they could evaluate me and the baby in person.

I think this is still a long shot, but if nothing else, I will have the benefit of another ultrasound (ha!), another MRI, and a fetal echocardiogram to tell me more about how our baby is doing. So wish us well! I will leave on Saturday and will be evaluated in Philadelphia on Monday and Tuesday. I'll have news to share by Wednesday about whether we made it into the trial and if we were then put in the surgery group.

We had all our appointments at our local Children's Hospital last week. Many of the professionals there were very positive about our baby's outlook, but we began to realize that a roomful of doctors equals a room full of opinions. Everyone agrees on the basics -- that our girl has spina bifida, mild hydrocephalus, and the Arnold Chiari II malformation, with normal brain development and chromosomes -- but they had slightly different thoughts on what her outlook would be. For instance, one doctor told us that there is no such thing as an "untethered" spinal cord when a child has a myelomeningocele lesion, because the cord always becomes attached to the skin and muscle around it. This is contrary to what we were told by the doctor who read our MRI results. It sounds like we will not know what is in store for our daughter until we meet her...and perhaps not for a year or so after that.

The neurosurgeon, who will operate on our baby right after birth unless we get our care in Philadelphia, gave us some news of concern about our daughter's Chiari. That is a condition in which part of the brain stem is down in the neck. Contrary to what I thought, hydrocephalus doesn't cause Chiari. It is the other way around, with the Chiari malformation blocking proper flow of cerebrospinal fluid (CSF) between the head and the spinal column so fluid builds up in the ventricles of the head. It's not exactly known what the relationship is between the Chiari malformation and the hole in the spine.

Fifteen percent of children who have Chiari II are symptomatic, and may have problems such as sleep apnea or difficulties swallowing. If our daughter is symptomatic at birth, she might die before she is two or three years old. This makes me all the more interested in fetal surgery, because one of the benefits seen in some infants is a reversal of the Chiari II malformation. The theory is that blocking the hole in the spine causes fluid pressure that might "push" the brain stem back up where it belongs. I asked why this would be true of fetal surgery, but not true when the surgery is done after birth -- and of course, no one knows. They think that possibly before birth, the Chiari malformation is not fully formed.

We also talked to a genetic counselor. I was dreading that appointment because I thought she might steer us toward abortion or forbid us to have another baby with our frozen embryos. But it turned out to be one of our best consults. She took a family history of my husband and of all that we know about our donor, and asked some questions about how I've taken care of myself in pregnancy. Then she said emphatically, "You did everything right. Most cases of spina bifida happen just like yours: Out of the blue, with no family history. There is no way you could have anticipated this."

She said that if we ever want to try for another pregnancy with our frozen embryos, that baby would have a 2-4% chance of spina bifida, and that I would be put on a mega dose of folic acid. I asked why I wasn't given it before, and she said, "It is only available by prescription and only given when there is a family history of spina bifida. No one would have offered it to you." She reassured me that missing a vitamin here or there would have had no effect. I even asked her about drinking tea. I have had a cup of black tea some mornings during pregnancy, with my OB's permission, since for me it soothes nausea. But I happened on a study on the Internet linking tea to spina bifida. I had hysterics until my husband found a more complete version of the study that blamed green tea. The genetic counselor said she's never read anything against black tea, and that one cup a day of anything other than toxic waste would never cause any kind of problem. She made me feel a lot better.

We also heard about how the baby would be transported from my delivery hospital to Children's shortly after birth. I was sad that I could not see her for a few days after my c-section. But my OB says she will get privileges at an "adult" hospital connected to Children's by tunnel. As soon as I can get myself out of bed and into a wheelchair, my husband can push me to her crib in the neonatal intensive care unit. That is where our daughter will be for 2-3 weeks after birth to have her surgeries, if we do not get into the study.

I had imagined not being able to touch the baby for all that time, but it's exactly the opposite. Mom and Dad can come in anytime day or night, and are invited to do as much of her basic care as they want to. The nurses are very in favor of feeding her with breastmilk if I can produce enough, though it will have to be given through a feeding tube after her surgery, and then by bottle, since she can't be picked up for awhile. And we were told they will not release her until we are comfortable with doing her catheterizations and any other special care she needs from her spina bifida, which was a big relief.

So, things are looking up. There will be many hard days ahead, and I'm frightened and depressed sometimes. Well, a lot of the time. But now and then, I can let myself imagine the moment when I finally get to hold my baby, and lift her to my cheek, and just breathe her in. I think in that moment, I won't regret a single instant of these years of struggle, or all the pain it took to become a mother. I think it will all disappear, and there will be only her.

Lots of test results

Hello again everyone. Thank you so much for the prayers, support, and good wishes for our little girl. All of your notes have meant so much in these last days. I haven't had the energy to post much, but I do come and read comments a lot.

First, I wanted to respond to "Wishing4ababy"'s kind heads-up regarding the Children's Hospital of Philadelphia (CHOP) and fetal surgery. Nowadays, CHOP offers fetal surgery for spina bifida only in the context of the MOMS study that I wrote about before. I am working with the coordinator of the MOMS study to see if we qualify, and if we do and are selected for surgery, we would go to CHOP.

However, I had a special ultrasound yesterday to see where my placenta is located, because placenta previa is an exclusionary criterion for the study. It turns out that right now, I have a partial placenta previa, which means my placenta is partially covering my cervix. Today, my results will be sent to the coordinator of the MOMS study, and she will send them to the surgeons in Philadelphia who will make the ruling of whether we can participate in the study based on this problem. I should know sometime today, or Monday at the latest.

My husband and I are resigned to not getting in to the study. The doctors want only low-risk pregnancies in the study, so that if a baby were to be born early or suffer other complications, they could be reasonably sure it was due to the surgery and not to placenta previa or some other condition. I guess our only other option is to explore having the surgery in another country, and I have not done any work on that as yet.

Of course we were concerned by the placenta previa itself. I did not know that I was at such high risk for this condition, but it turns out that older mothers with fibroids and previous uterine surgeries such as myomectomy and D&C (that's me) are at increased risk for placenta previa. If it does not clear up, there's a risk of premature birth and serious bleeding as the pregnancy progresses.

I was surprised that our perinatologist and OB were not more concerned, but when I read more I learned that 90% of the time, placenta previa diagnosed in the first or second trimester resolves itself as the pregnancy progresses. That is because, as the uterus increases in size, the implanted placenta is pulled into a new position, often away from the cervix. Even if my placenta previa persists, as long as there's no bleeding the only complication will be a c-section delivery. I will have that anyway for my spina bifida baby because they don't want to traumatize her spine with a vaginal delivery. My only restrictions right now are no sex, and no high-intensity exercise.

On the plus side, we had an MRI of the baby this week and there were some positive results. Her diagnosis of myelomeningocele was confirmed, but I must have misunderstood the doctor after the ultrasound because they now say that her hydrocephalus is "mild." Also, her brain development is normal. This means that if the fluid pressure in her head does not get much worse during pregnancy, she has a very good chance of avoiding brain damage. Also, they saw that her spinal cord is not tethered. That is a condition where the spinal cord gets stuck at the site of the deformity. When that happens, even more damage is done to the nerves because the cord can't move as the baby grows. Our baby still has the damage of the myelomeningocele itself, and we won't know how bad that is until she is born. But the lack of cord tethering at this point is good news.

The MRI took 40 minutes longer than the normal one hour -- my legs were numb from lying on my side all that time! -- and when they took me out of the machine the radiologist apologized and said, "You have a very squirmy baby! She wouldn't hold still to have her picture taken." I was happy to hear she's still vigorously moving her legs.

Also, we received preliminary results of the amniocentesis, and so far our baby is chromosomally normal. We'll receive the full report sometime next week, when we will also have a series of appointments at Children's Hospital to learn about the treatment she will receive for spina bifida. The MRI was at Children's and I must admit that I was very sad that morning as we walked by so many sick children and their exhausted, hollow-eyed parents. I said to my husband, "This is the first trip of hundreds we will make to this hospital." However the staff was upbeat and very kind; they even gave me a yummy boxed lunch because I wasn't allowed to eat before the MRI.

There is such a bewildering amount to learn about how to care for our daughter, and some days it is overwhelming and I cry a lot. But I have had some wonderful emails from spina bifida parents and even spina bifida sufferers. Nearly all of them begin their email or post with, "Congratulations on your baby girl!" And I guess that is where my focus should be -- on my daughter, and not her disease.

Thanks again for all the support and prayers.