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.

People are lovely

Hello again everyone. I wrote before that my previous post would be my last, but I simply had to respond to the outpouring of love and support you have showered on me, my husband, and my daughter. People are lovely. "Thank you" is pale and inadequate for what I feel...but I must say it. Thank you. Thank you so much.

I see from the comments that in my hysteria, I was somewhat confusing last time about our daughter's diagnosis. Malka has the right of it: The quad-screen blood test is not diagnostic of spina bifida or any abnormality. All it can tell you is whether, based on the substances in the mother's blood, there is an increased chance of a problem in the baby. My test revealed a 1-in-14 chance of neural tube defect. Those odds are much higher than normal for a 27-year-old egg. Had I known that going in to the Level II ultrasound, I would have had some warning of what was to come, but since the results came back after I was already having the ultrasound, we were stunned.

There is no doubt that our girl has spina bifida. Even Bill and I, watching the ultrasound screen, could see the bulge of the myelomeningocele on her spine. And there was something subtly off about her head. To use a cruel but visually descriptive word, it's rather a conehead. Not so grossly deformed, yet, that we could spot it on the first ultrasound with our layman's eyes, but after we were told she had the hydrocephalus that accompanies spina bifida, we could see it.

You all know what a champion worrier I am. I worried about my blood pressure, my uterine fibroid, diabetes, pre-eclampsia, and anything else suggested by the Internet that might complicate a 40-year-old's pregnancy. But the possibility of a birth defect never crossed my mind. After the death of my first two babies last year from chromosomal problems, I made the difficult decision to sacrifice my genetic link. And in my mind, I had a binding contract with God: Hey. You up there. Are you watching this? I'm giving up on my crappy eggs and I won't be screaming prayers at you anymore for a genetic child. Now for that, I get a healthy baby, right? Even-Steven. Let's shake on it.

Now I feel betrayed, although there's nobody to blame except my own naivete. God never promised me a thing.

And yet, I don't want to scare any woman out there who is considering donor egg. This is a statistical nightmare, nothing else. I don't have all the facts and figures and wouldn't know what to do with them mathematically if I did...but I know that in the U.S., spina bifida children account for only 1 out of every 1000 - 2000 births. If some smartypants out there could cross that with the tiny number of donor egg births each year, what are the odds that a donor egg baby turns out to have spina bifida? It has to be somewhere around the likelihood of getting struck by lightning, hit with a falling coconut, and bitten by a shark all at the same time. So please, if you are considering DE, doing a DE cycle, or pregnant with a DE baby, don't let what happened to me and my daughter frighten you. Take your folic acid every day, and rest easy. Or at least, worry about something else.

A few of you have asked what is next for us. Last Friday we had an amniocentesis to determine if there is anything else wrong with our baby besides her spina bifida. The perinatologist told us, "Frankly, I do not expect to find anything bad on this test." He didn't say, but I took that to mean that he had spent a long time looking at her organs and her limbs on the ultrasound, and didn't see any other cause for alarm. The amnio results will take about 10 days to come back.

Meanwhile, we will at some point -- when they finally condescend to quit yanking us and set some firm appointments, grrrr -- go to our local Children's Hospital and have a battery of tests, including an MRI of the baby. Possibly that will provide more specific information about her condition. After all the testing is done, we will meet with doctors and genetic counselors who will hopefully make some better predictions about her prognosis and "give us our options." A friend who has gone through something similar (though her baby, thank God, turned out to be entirely normal) warned me that this is a painful euphemism for the abortion hard-sell and worst-case scenarios we will encounter at the hospital. I'm bracing myself.

But what I am hoping for is some guidance. I want them to tell me something like, "With stats like your daughter's, 80% of children will be mildly retarded but will eventually walk," or something like that. All we have been told so far is that with her lesion at the L4 vertebra, she is likely to have problems with bowel and bladder control but will not be fully paralyzed in her legs. Given that she has hydrocephalus and Chiari II malformation of the brain, the outlook for brain damage is more uncertain, and I can't find much on the Internet to guide me. After she's born, shunt surgery will relieve the pressure, and the perinatologist said that if the fluid in her head becomes no worse during the pregnancy, it will be a "good sign." But the truth is, the damage to each particular child is very unpredictable, because no one knows which of the exposed nerves is being damaged until after the baby is born and her development can be monitored.

There is also the possibility of experimental in-utero surgery. Doctors who observe spina bifida children on ultrasound have noticed that early in pregnancy, their legs can be seen to kick. And then, as the pregnancy progresses, their legs stop kicking. This argues that nerve damage is progressive and if the exposed nerves could be covered up before birth, some damage could be avoided. Nothing can heal the damage already done to her, but if we could get the surgery, she might function at a much higher level. Even better, in some children who've had the surgery, the Chiari II brain malformation has reversed, and the progression of hydrocephalus is arrested. Not for all children, but some. The risk of fetal death from the surgery is 5%, but to Bill and me, it would be worth it.

They started doing these surgeries around 1997, and they used to offer it electively. However, not all children who had the surgery appeared to be helped by it. Doctors had no clear indication of whether the children who did well after surgery would have done so anyway, or had in fact seen a benefit from surgery. So all the doctors who perform the surgery have banded together and decided to do a clinical trial called the "MOMS study." They will offer surgery only to those who qualify for the trial. If accepted into the trial, a computer program randomizes each mother and baby into one of two groups: in-utero surgery to close the spinal lesion, or post-birth surgery (which is the normal treatment for a spina bifida child).

I do not think we will qualify for the clinical trial. I have looked at the inclusion/exclusion criteria on the MOMS web site and I see a few areas of concern: I have a uterine fibroid; I have type O-negative blood which argues for maternal/fetal blood incompatibility; and worst of all, the perinatologist says I have placenta previa (my placenta covers my cervix). He says this might not necessarily exclude me from the study, because the placenta extends toward the back of my body, leaving the surgeons a place to cut on the front of me. But I am still not hopeful.

Initially I thought that what I read online could not be true. Surely, if her father and I want to take the risk of surgery for our girl, they would not deny care to her because we don't meet the study criteria? But I have called the study coordinator and one of the hospitals that previously offered the surgery electively, and both told me bluntly: "If we let people have the surgery without being in the study, no one would join our study." Apparently, science is more important than my baby.

Please, if there are any spare prayers lying around at your house, ask that by some miracle we can get our girl into the study, and that we are then coin-tossed into the surgery group. I believe with all my heart that it might help her, and that if she could speak to me now, she would say, "Mommy, take the chance. Help me in every way you can."

I really think that at this point, God owes her a favor.

It's a girl, but...

Hello to anyone still reading my blog. This will be my last entry.

I am at 19 weeks pregnant with a little girl -- my secret hope come true, though I told everyone I just wanted "healthy." I got my girl, but she is not healthy. My quad screen blood test showed a 1-in-14 chance of neural tube defect. Unfortunately that result did not come back before we were in the office for a Level 2 ultrasound on Tuesday, so we were blindsided by the news that our little girl has spina bifida.

Spina bifida is a serious birth defect. She has a lesion or hole in her spine because something went wrong in her development at around 8-10 weeks. In her case, the hole is very low on her spine, which is relatively good news. It means she may have difficulty learning to walk and to control her bladder and bowels, but probably will not be paralysed or unable to breathe, which could have happened if the lesion had been higher up. Unfortunately, she has the worst form of spina bifida, myelomeningocele, which means a part of her spinal column and its fluid are protruding in a sort of hernia or sac through the lesion. A common complication that she already has is hydrocephalus, or "water on the brain," with a related complication called the Chiari II malformation in which the pressure of this fluid presses her brain down into the upper spinal area.

All of her problems can be treated with surgery after birth, but things could get much worse for her in the remaining weeks of pregnancy if the fluid pressure in her head continues to build. She may not be of normal intelligence or if she is, she may have learning disabilities. She will always be a "special needs" child, and if she lives she will face a lifetime of surgeries and the risk of many complications. There is no "cure" for spina bifida, only treatments for its symptoms.

I am told that, insofar as they know, my daughter's condition has nothing whatsoever to do with her being a donor baby, unless my donor was untruthful about having a history of spina bifida in her family. I heartily doubt that; I know my donor is a wonderful woman. I am also told that since I took my prenatal vitamins, her condition has not resulted from something I did wrong, like a lack of folic acid. It simply happens in some cases, and nobody knows why.

I thank all of you for your support through the donor process, as I move on to this next challenge.

Pregnancy update

Apologies for the month offline -- I seem to be saying that with every post lately. My DE pregnancy is going just fine, but I have had all-day, all-night nausea. I've got my coping mechanisms though, and I should be coming out of it soon since I'll be 12 weeks this coming Wednesday. I graduated to the regular OB and had my first visit...got to hear the tiny little drum that is my baby's heartbeat! It was great.

Not much other news...I declined getting a lot of the genetic testing because I know that I won't terminate either way. They'll do a blood test on me at about 15 weeks or so, to allow us to be prepared in case there is actually something wrong. So now I just wait for my monthly OB appointment.

Be well, everyone (if there are any readers left!) :D

Not just a uterus

Hello to everyone who hasn't given up on checking this blog.

I am still here, and still pregnant. I think out of desperation, I just needed to let my thoughts wander away from the whole pregnancy issue for awhile. To stop thinking it, writing it, chewing it over in my thoughts. It has come home to me that in early pregnancy, there is so very little I can do, beyond taking my meds and eating well. So, apologies for my unannounced sabbatical. I read about 10 books, had my first alcohol-free-for-me dinner party, and am now ready to resume regularly scheduled programming.

So. To catch up on the news. The weekend before last, I had some bleeding and cramping that made me freak out, because that is how my first miscarriage started. It's a heartbreaking thing about pregnancy: Bleeding and cramping are either completely normal and nothing to worry about, or they signal the impending death of your baby. The doctor will tell you the former...your heart will scream the latter, especially if you have miscarried before.

I cried inconsolably all weekend...I was sure my little baby was leaving us, just like the two before. On Monday I went in to my RE's office for an "unscheduled" ultrasound at 5 weeks, 5 days. All was well. The bleeding and cramping had stopped and there was no indication of bleeding in the uterus. There was only one baby, which was something of a disappointment. I had so wanted twins, both for my own selfish sake and because I think it might be important for a DE baby to have a "full-blooded" genetic sibling. But, we've got two batches of embryos that we can use later for frozen transfers, and hopefully we'll have our second baby that way.

The doctor saw a gestational sac and a yolk sac that measured correctly for the date. I could have sworn I saw the flicker of a heartbeat, but the doctor kept moving the ultrasound wand around so much, I couldn't get a good look. It's like when my husband channel-surfs...I wanted to bark at him, "Hold still for a minute and let me see!"

Then came the real blow. You guys know what a worrywart I am, right? I've made that really clear? So the waiting time in between blood test results and ultrasounds is a special kind of hell. I had originally been scheduled to have my first ultrasound at 6 weeks, 2 days. But I'd gone in early out of worry from the cramping and bleeding, so the doctor said, "Since you came in today, I won't need to see you for 10 days...we can't see enough difference in only five days."

My heart just sank. At 6 weeks, 2 days we might have seen the heartbeat, and that was the point at which my other two pregnancies went wrong. We saw a heartbeat for each of my little ones, but they were slow, predicting the deaths that ultimately occurred. So this was a very important milestone for me...and to find out that my punishment for worrying was, five more days of worrying? Well. I wished so much I'd been brave about the cramps and bleeding and just toughed it out.

True to my own aggravating personality, I submitted meekly to the doctor's decree in his presence, and then bitched up a storm about it later. Why can't the man understand that I'm not just a uterus?

Yes, let us all praise the uterus...it's the star attraction here, indeed it is, especially since my ovaries have left the building. I'm proud of the old girl for doing her job. Yet, attached to that organ is an entire woman, with a heart and a brain that deserve some consideration. In short: Couldn't he see he was making me nuts? Would it have killed the man to give me an extra ultrasound?

And he had to cap off the interview with, "And you know, those beta numbers were going up but not very fast...we won't know anything until we see a heartbeat, especially with your history."

I wanted to throttle him. My "history," which is based on high FSH, poor responder, egg issues, should have nothing whatsoever to do with my experience this cycle. Hello, using a 27-year-old egg here? Wasn't that the whole frigging point of the big speech he gave me, that if I would give up the pursuit of a genetic child and go with DE, my miscarriage risk would go down to that of my donor? Jeez.

So I suffered through the 10 days...and I do mean suffered, since I was starting to have constant nausea and bruising fatigue. Not complaining, mind you--well. Maybe a little. Yesterday we finally saw a healthy heartbeat. It measured 130, and all is right with the pregnancy and the world.

Maybe now I can relax, and smell the--ugh. No. No smells. Gaaack....

Back on track

I am unutterably relieved to post that today's beta went up to 596, from 223 three days ago. IVFer's HCG calculator tells me this is a doubling time of about 50 hours, with the goal being 48 hours. Good enough for government work.

The nurse had no explanation for Friday's way-too-low number. Me, I am leaning toward the idea of a very early "vanishing twin," since we put back two good-quality embryos. Which is sad. I did so want twins, and to me these embryos are babies, at least once they are inside me and growing. There is sorrow in losing one. But I'm grateful that the number went up so well. Hopefully, this means that the remaining embryo is healthy. The overall number is still a bit low for 19 days post-retrieval, but the range for normal betas is very broad, and possibly I had a late implantation.

So I'm still in the game, and just barely sane. My husband just got home and gave me a big hug (he had called on his cell phone after work to get the results, so he already had the good news). He said to me, "So, have you learned a lesson about being more optimistic?"

Given what he's put up with in the past few days, I resisted the urge pinch him very hard. Let's just say that we had a bad weekend at our house. Without my usual therapy for misery--antidepressants, knocked back with a nice glass of crisp, white wine--I was reduced to chocolate cookies and sleeping as much as possible. But I still found a few hours to cry, whine, and act generally morose.

So, I didn't pinch him, or stick my tongue out at him. But I did give him a beady-eyed glare. "No, I haven't. I've had too much bad stuff happen to me with pregnancies." He had the grace to shut up.

So, the next milestone will be my first ultrasound on April 29th, at 6 weeks, 2 days. It's going to be a long wait!

A heartfelt "thank you" to all who posted such sweet, supportive comments. I read them yesterday, and they meant the world.

Slow-rising beta

I had my second serum beta HCG test today. It has risen to 223, from 156 on Wednesday. This is not the doubling that is expected for a healthy pregnancy, and so they will check the bloodwork again on Monday. But it does not look positive. This didn't even happen until much later in my earlier pregnancies.

I find myself amazingly shocked. Somewhere inside me I had this core of confidence that with a healthy young woman's egg to work with, I would have a baby. I know in my head all the statistics and I guess I should have been more cautious in my emotional investment. I find myself wondering morbidly whether this has happened to me because of my emotional issues; how I continue to have issues and thoughts about donor egg, even now. Is this a punishment?

I guess you never realize how much you loved and wanted something until it's taken away.

Beta plus!

This morning as planned, I used my last HPT and got an instant, but faint, line. It was darker than the preceding tests, but worried me a bit for its lightness. (OK, the prevailing wisdom says that HPTs are only good for 'yes' or 'no' answers...and there's all that stuff I've spouted myself to other worried women about urine concentration, yadda yadda, but what do we infertility patients do best? We worry!)

I decided to call my RE's office and see if I could get my beta HCG blood test done earlier than Friday. I figured they would say no...but to my amazement, the nurse said, "You got a plus HPT? Why don't you come in right now!"

So away I went at lunchtime, and they just called me with the results: 156. Which, the nurse said, is a very good number for a test done two days early. (For those in the know about such things -- which includes, what, everyone who is kind enough to read my blog? -- I'm at 11 days post 3-day transfer, 14 days post retrieval.) I'll go back in on Friday for the regularly scheduled test, to see whether the number doubles appropriately, and then it's another dread two-week wait before the first ultrasound.

So. Here I am at the finish / starting line...and I must share that the happiness I feel, while genuine, is bittersweet. Yesterday was the one-year anniversary of my first miscarriage. I know that I have to let go of the past...let go of that child...and welcome the one I'm carrying now. I can do that.

But just today, at this crossroads, I'm thinking not just of the children ahead of me but of those I've lost. I love you all, my little ones.

And again with the line

This morning's test required no squinting, no waiting, no tilting, and no special lighting. It's a faint but definite line and has even acquired a bit of pink color. Still far lighter than the control line, but I'm confident I've got something going on. My nausea and breast soreness are getting worse...I mean, better, since these are good signs. DH gave me a big hug last night and I yelped, "Ouch!!!"

I have one last HPT in my arsenal, which I will use on Wednesday. Unless, of course, I prove to be as spineless as I have so far, and I go out and buy more. I'm glad these things are legal and don't make you gain weight, because they're like crack to we poor infertiles.

My serum beta HCG test is Friday. It's gonna be a loooooong week.

One thing I am realizing, as I run this race: In a sense, I will never cross the finish line. If I get a positive beta on Friday, it is simply the starting line of the next contest, waiting to see if the beta doubles appropriately. If the first ultrasound is normal. If the heartbeat is seen, and is fast enough. If the old-lady tests come back normal. And so on, until birth, and later. I can fast forward, in my thoughts, to that day when my little one climbs on the schoolbus, taking my heart with her out into the world. It is a sobering thought.

Phantom line

How do I torture myself? Let me count the ways.

I really must buy stock in the company that manufactures First Response Early Result pregnancy tests, because I'd pay my own dividend. The loud pink box blares: "Results 5 days early!" Hmm. Five days, seven days, what's the difference? And, my transfer was in the morning, so really, we're talking six-and-a-half days.

So I dithered, all the time knowing that because I'd bought the darned things, I was going to do one, even though I was only 7 days post 3-day transfer (7dp3dt). And of course, after the deed was done, I didn't see anything except the one lonely, dark pink line. Disappointed but embarrassed that I'd been so weak, I got my husband to stab me with the progesterone-in-oil (PIO) shot, and then went to bed. (Strangely, a negative HPT makes those shots hurt like a bitch.)

And then this morning, just to torture myself further, I carried the stick to the window and looked at it in bright daylight. On one of my pregnancies, I put myself through this same thing, and after a couple hours' wait, a very faint line did show up (although that was at 9dp3dt). So, this time, just maybe...

And lo! In the bright morning light, at a certain angle, I could make out a very faint line. A wishing-hard, phantom line. For all I know, the laser-like intensity of my gaze etched the line onto the test strip.

But I'll take my good cheer where I find it. Today I'm happy; today I'm willing to attribute my faint nausea, extremely sore breasts, and vivid dreams to pregnancy and not to a surfeit of progesterone. Only five days to wait until my beta HCG blood test tells me whether my confidence is justified.

And of course, those HPTs come in packs of two.

Transfer day

I'm pregnant.

Or at least, I like to think of myself that way, after a transfer. Inside me are two 8-celled embryos, one Grade 1 and one Grade 2 (just a bit of fragmentation). These were the "beauty pageant queens," as the RE put it. He said things look very good with my uterine lining, and there's every reason to hope for a good result. My beta HCG pregnancy test will be on April 15.

We also had 8 other embryos that looked healthy, to freeze for future frozen transfer cycles if we need them. That is a comfort, in case neither of these embryos sticks. The other three embryos were not dividing correctly, and the doctor advised that we discard them. We agreed, not without unease.

But that is a sorrow for another day. For today, I'm going to take it easy, and enjoy this feeling. Let the worry begin tomorrow. The feeling that time is crawling on its hands and knees. The gnawing ache that after all I've done, it may not be enough.

For today, I'm pregnant.

EmbryOH!

I'm happy to report that my cycle is going very well. On retrieval day, there were 18 eggs. Of those, 13 have fertilized via ICSI, and are growing. So we have 13 little embryos across town!

My transfer is scheduled for Saturday at 7 a.m., at which time the doctor will talk with us about how many to transfer and how many to freeze, based on the quality of the embryos.<>

I'm starting to be excited now, amid all the fears and anxieties. It is a nice feeling. More later...

Baby makin' Wednesday

My RE's office called Saturday morning. Our donor was in on Friday and Saturday to have her follicles checked, and she now has 14 nice-sized follicles, which is lovely. Retrieval is scheduled for Wednesday, March 30th and transfer will be Saturday, April 2. We have to use ICSI because of my husband's poor sperm morphology, and I've written before about my epic bad luck...but I think with that many follicles, it is not unreasonable to expect we'll get to transfer with at least two embryos.

My husband takes it as fact that I'll turn up pregnant in a couple of weeks. Naive lamb that he is, he doesn't realize what a tragic miracle we are: Pregnant twice out of two IUIs and one IVF with my eggs, never more than 2 good follicles each time -- yet we lost both babies to miscarriage. He actually said to me, "Every other time you've tried, you've gotten pregnant." I boggled at him. "What?" he said, honestly puzzled.

Deft questioning revealed that he had, in fact, forgotten entirely about one of my IUIs -- the unsuccessful one. Previously, I've tried to be politically correct in my use of pronouns, but apparently, "our" isn't the right term to use since he can't even remember how many cycles we've done. Apparently this is my cycle and my DE baby.

This man-like lacuna in my husband's memory -- trivial in his eyes -- made me feel very alone in this process. And that is distinctly odd, considering that I'll have no part in the baby makin' this Wednesday. To be honest, I am more sad than I thought I would be as the time draws near. It is as if, in saying, "Hello, baby!" to this new life I'll perhaps be carrying Saturday, I am saying goodbye all over again to the children I lost to miscarriage, and to the ones I will never conceive on my own.

Perhaps this feeling has something to do with visiting the family. My brother and his wife, after their own struggle with infertility following the effortless conception of my nephew a month after their wedding, are pregnant with their second baby, a girl, from an IVF cycle. My sister-in-law is 39, the same age I was when I conceived and lost my babies. Shrink as I must to admit it, the truth is that although I am happy for them, and grateful they do not have to face the choices I've had to face, their success has ripped the wounds from my own failure.

I was doing pretty well at their house on Easter, where the family gathered for brunch after church. I chatted, helped make a fruit salad, tried not to notice how much fatter I am than my 15-weeks-pregnant sister-in-law. Yes, I was doing very well...until I saw, posted on a bulletin board in the corner of their kitchen, a collection of ultrasound photos of their healthy baby. You could see the little face, an arm raised as if to wave, that sweet round belly babies have.

My heart wailed in my breast. Last week, looking for a receipt so my husband could return something, I found in the side pocket of my purse my own ultrasound pictures from my last dead baby. My little Sam -- we learned he was a boy from a chromosome test after we lost him. So the images were fresh in my mind of my own little bean, my sweet boy who couldn't live because the egg I gave him wasn't strong enough to divide correctly. He had a uniformly lethal Trisomy 14. To add insult to injury, my sister-in-law's own sister was there too, prattling on and on about the pregnancy, and she happened to reveal some things I hadn't known: That the baby is a girl, and they're thinking of naming her Madeline.

That was to be my name for a girl baby. I hadn't quite talked my husband into it, but I'm sure I'd have gotten there in the end.

So, instead of being filled with a quiet, secret excitement at our own upcoming event, I found myself doing what I always seem to do at family parties...sneaking off to an upstairs bathroom to cry. It does no good to pretend that seeing those ultrasound photos, in such stark contrast to my own poor little one who was dead long before I could make out his face or his limbs, did not hurt me deeply.

I feel like scum today. Am I so selfish, that I can't allow joy to have the upper hand? Either for my brother and sister-in-law, who've had their own nightmarish struggle with infertility...or for myself, because I will soon have at least a chance to be pregnant again. I feel I should not begin my DE children's lives in grief for their dead siblings, and yet I can't seem to help it.

I wish I had never seen those ultrasound photos.

Oh well. I took my last Lupron shot this morning, and I will start progesterone-in-oil shots Wednesday night, leaving me exactly one puncture-free day. I wish I could push life's fast forward button to Saturday afternoon, when experience tells me I will be lying flat on my back, trying not to jostle my uterus no matter what the professionals say. From time to time I will pat my too-ample tummy and whisper, "How you doing in there, baby? Is it time to cue up the Mozart CD so you'll be a mathematical genius?"

It seems like I've waited forever for this, and yet it's all happening so fast.

Counting my eggs before they're ICSI'd

In the spring, at Easter time, a middle-aged woman's fancy lightly turns to thoughts of...eggs.

What, you thought I was going to say love? In hopes that Lord Tennyson will pardon my paraphrase, I've got to go with Tina Turner on this one: What's love got to do with it? I won't even be in the building when my husband's bashful sperm are introduced (via ICSI) to my donor's pretty eggs, sometime next week.

Today I went to my RE's office for an ultrasound of my uterine lining and some bloodwork. They had to stick me twice to get my blood because I'm dehydrated, having been a victim of the flu recently. This was not so good, as I loathe needles. Later, the RE made up for it in giggles by making ballpoint-pen x's on my butt, in his earnest efforts to convey to my husband where he is to inject the progesterone-in-oil to get it into the muscle. I'm laughing all over again thinking about tonight: "Honey, I want you to look at my butt. No, really."

I took the opportunity to ask how our donor is doing. She was in this past Tuesday and has 11 follicles, all about the same size. This is a good thing, so that none are underdone or overcooked when she takes her trigger HCG shot. She will be checked again tomorrow. Then we'll know the exact dates of egg retrieval and transfer.

I must admit, although I would never wish either discomfort or the danger of overstimulation on our kind donor, that I had hoped for a few more follicles. My RE says that, as a grossly generalized rule of thumb, 50% are lost at every stage of the game. So, if we have 11, just 5-6 will be retrieved, and of those, 2.5-3 will fertilize and grow; if 2 are transferred to me, one may survive and grow into a baby. To the doctor, by those rules, 11 follicles is the perfect number, since a healthy singleton pregnancy is his ultimate goal.

But me, I'm both greedy and broke. I was hoping that we'd have enough embryos from this cycle to have two children, whether that's twins or by freezing embryos we don't use this time around. I plan to tell my child(ren) about their donor egg origins, and there's no way to know how they will feel about it. It could be important to them to have a full sibling. It will be years before we can afford to do this again, win or lose.

Oh well. Note to self: Self, stop the insanity. Don't worry about what you can't control, and by the way, how about a little gratitude for what you have? (Self's answer: "Shut. Up.")

My lining, by the way, was plush like a velvet Elvis picture: 12mm. The RE said they look for anything over 6mm. Padded walls for the embryos' playroom, I guess is the idea. The better for implantation, and making themselves to home.

Is it my fault I'm the type of woman who, when confronted with such good fortune, immediately wonders, "Is it too thick?"

Quite obviously, I'm the one who needs the padded walls. Infertility in general -- and donor egg in particular -- is crazy-making. It can create a schizofrenic where none was before. You think things like, "I'm so happy...in about a week I might be pregnant...Oh God I'm so scared, in a week I might be pregnant!" I long for the days when getting pregnant was a simple concept.

Doing donor egg is like standing in line all day at an amusement park, waiting to board the big rollercoaster. You shelled out big bucks just to get into the park. You're hot and impatient and bored while you wait. You mutter complaints to your husband about how long this is taking and wonder aloud whether it'll be worth it. You stand on your tiptoes to peer ahead at the front of the line, longing to be where those people are. You think you'll never get there, and then you do. At last.

But once you are actually on the ride, chugging up the hill toward that first big drop, your thoughts are more like this: "I'm so scared I'm so scared I'm so scared omigod why did I want to do this I'm so scared...!" Then you drop. You're falling. And you scream, in exhilaration and fear, all mixed up with total delight. That's what donor egg feels like to me.

So far, so good. Waiting to fall.

Cold feet

This is really happening. I am really going to do this. Right?

I got a call from my clinic yesterday saying that our donor is downregulated and ready to start her stimulation drugs next week. I will start Estrace this Sunday, to build up my uterine lining for implantation. (Sadly, I have to keep taking the evil Lupron...I thought I'd get to quit when I began Estrace, as I did in my own IVF cycle, but this time around they don't want my ovaries getting in on the act at all.) Egg retrieval from the donor will probably be March 29, with transfer on April 1. I do hope that isn't an omen.

I carefully wrote all that down as the nurse was speaking, and after we hung up I meticulously transferred it to my calendar. And then I sat back and tried to figure out why the bottom had just dropped out of my stomach. Why all my doubts and fears about donor egg were beating about my head like a manic bird's wings. Why I suddenly had, as they say, cold feet. Isn't this what I've been waiting and working for? What I've been longing for?

Well...no. What I've been waiting for, working for, longing for, is a baby. A donor egg cycle as my method of family building was never high on my list of life goals, and it carries with it such a freight of stress and uncertainty that if it were a box on my doorstep, I'd call the bomb squad. Sometimes, donor egg feels too hot to handle.

Many have said to me, "Bee, you think too much." This is no doubt true, especially since the quality of my thought often leaves much to be desired (think pete-and-repeat jokes, weird David-Lynch-esque daydreams, and dustbunnies). But I think this decision I've made, this step I'm about to take, deserves some high-grade cogitation. This is huge. The hugest. I'm at the altar, about to say "I do." I am reformatting the hard drive that is my life, and I'm about to press ENTER. Or, try this metaphor: I'm about to jump off the high dive; I know there's water in the pool, but can I swim? Have I really got the stuff to be a good donor egg mother?

That's why I have the willies today. I am so very close to the point of no return. Assuming I am lucky enough to have embryos to put into my body on April Fool's Day, I will no longer be a woman dithering about donor egg and wondering if I can possibly slay all my dragons and be a good mother to my sweet maybechildren. On that day, with those embryos inside me, I will be a donor egg mother, if only for the time between transfer and beta HCG. I will be responsible for those potential children, and committed to raising them as best I can, with all the love and care I can muster. There will be no avoiding the pain I fear ahead, if they have problems or issues with their origins. On that day, there will be no going back. No "do overs," like we gave ourselves in childhood when we blew it playing kickball.

God, who wouldn't be scared?

It sure would be easier if my reproductive decisions were as simple as a smooth Merlot and a date with my husband. But they're not. I'd like to report that after a night of calm reflection, I arrived at a Zen-like serenity in my decision to be a donor egg mother. Or at least, a steely determination to stick to my guns, and damn the torpedoes.

But that would be bullshit.

The bald truth is, I was so freaked out last night, and so freaked that I was freaked after all the time and blog pixels I have spent on my DE decision, that I drank a big glass of wine -- I know, I know, bad me -- and tossed and turned all night. I look like hell today, and the only certainty I have is this: If I were to cancel this cycle, I would regret it forever.

See, I make all my life decisions based on one simple principle: How can I keep bad things from happening to me later? It's lowering, to realize what a true pessimist I am. If I chicken out, the "What if?" question will torment me like Marley's ghost. I will grieve my maybechildren if I don't at least try to become their mother for real.

So I am not going to shrink back from this, no matter how frightened I am. I'm off that high dive, and I don't care if I go splat. I'm going to take my vows. I'm going to press that button. I will take this leap of faith, and trust that wherever I land, I can make that place a loving home for me, my husband, and all our children.

Ladies in waiting

Not much to share today, except the bit of whimsy that follows. I've been a bit down. They say that women experiencing infertility have depression deeper than women undergoing cancer treatment. I believe it.

Earlier this week I called my egg donor coordinator for no real reason at all. I just wanted to hear her voice (isn't that sweet?). Our donor will be coming in sometime this week to see if she's down-regulated and ready to start stims, at which point the coordinator will call and strike my chains: No more Lupron! I can't wait for a mainline hit of Estrace, so I can stop sweating and start sleeping.

You know what gets me about this whole donor egg process?

Don't answer that. The replies would be legion. Today, however, my issue is with Waiting. And her hag of a sister, Worrying. I am a child of the first TV generation; I was born in 1964, the very last year of the Baby Boom. My attention span (unless I'm reading a really good book) has been irrevocably shaped by episodic drama and news-at-eleven sound bytes. Delayed gratification? Not.

So yeah, Waiting and Worrying drive me bughouse. They've been stopping by lately, hanging out, like good girlfriends do. Waiting asks me out to lunch a lot, trying to fill up my time. Worrying yap, yap, yaps in my ear and goes at me with her little rat teeth if I don't find some way to shut her up. I wonder sometimes, how many of our infertility decisions are driven by sheer exhaustion. We're tired of Waiting and Worrying. They're such bitches.

First I Waited to reach the top of my clinic's egg donation list. That took about a year, but I filled that time profitably by having my fibroid-infested uterus cleaned out, getting pregnant twice with my own eggs, and having miscarriages. Worrying had a field day during both of those pregnancies. After each ended, she smiled a smug and self-satisfied smile and said, "I told you so."

Reaching the pinnacle of the egg donation list was a less-than-welcome achievement after the worst year of my life, but it finally happened. Next, I Waited until a donor we liked became available. We passed on three donors for various reasons before we were matched. And then Waiting piped up: "Are you sure you didn't jump the gun a little bit? The next donor they offer might be just perfect. Maybe you should think about this. C'mon, let's you and me go out for a drink...."

I loved my donor's profile, and when I looked at her picture, I felt an instant click: Yes, that's the one. But our donor is not proven. I was just bored with Waiting. And Worrying reminded me that some other couple could snatch her up while I was dithering. (Our clinic gives you a week to consider a donor before they'll offer her to the next people on the list.) I caved.

Then, I Waited for our donor to recover from bronchitis, poor girl, and to get "Day 1" of her period. Never has the old auntie been so welcome, especially when not coming to my own house. Since then my donor and I have both been injecting ourselves with Lupron, in an attempt to downregulate and match up our cycles. This process is taking a very long time, but I have kept myself busy exchanging e-mail with Waiting and Worrying. (Is our donor taking care of herself? Is she taking her shots? Am I taking care of myself and taking my shots?)

In fact, I must thank Waiting and Worrying for this blog. It was their idea.

As soon as this cycle starts for real, Waiting and Worrying will be moving in to my house. I think they'll be sleeping in my bed and eating my food. They'll be very busy girls after my donor begins her stimulation drugs, and we face the whole how-many-eggs, how-many-embryos agony. And after transfer, they'll call their mother...the foul Queen of all the Waits, who reigns in the special circle of Hell named for Her: the Two Week Wait.

"Assuming you get that lucky," Worrying reminds me. "Not everyone gets pregnant from their first donor egg cycle." She's sitting on the edge of my desk, filing her nails to nice, sharp points. The better to scratch me with, later.

"Shut up," says Waiting, hovering behind me. She glances at her watch. "I told her to write a blog to kill a few minutes, and her lunch break is almost over."

Worrying pouts. "Well okay. No need to be rude. I was just saying."

I could get used to these two. I'd better.

Shania, I don't feel like a woman

I really don't. I heard that song of yours on my way home from work today. I'm not going out tonight -- who can afford it, when you're bleeding money from every orifice for infertility treatment? I'm not feelin' alright -- I could fry an egg on my chest from Lupron-induced hot flashes. But "Oh, oh, oh, go totally crazy" -- now you're playing my song, sister.

Of all the humiliations of being infertile, this one shrivels my soul: Infertility neuters me. From the moment I learned my ovaries could not produce viable eggs, I devolved from she to it. Or if you like, from young(ish) to old. Before, my wrinkles were laugh lines and my few gray hairs were extra blonde. After, my youth was over. And I had missed it.

Through sheer bad luck, I learned I was infertile on the day I found out I had uterine fibroids and a lump in my breast. I had scheduled my mammogram months before, and it happened to fall on the same day my brand new reproductive endocrinologist (RE) wanted to meet with us to assess the results of my Clomiphene Challenge Test (CCT) and perform a hysterosalpingogram (HSG). I almost rescheduled the mammogram, but the appointments are so hard to get, I let it stand. I was concerned that we hadn't become pregnant in six months of newlywed effort, but at 38, I was confident that one baby was achievable, even if we had to have medical help to do it.

We went first to the RE's office for the FSH blood draw and my very first ultrasound. I was shattered to learn that I had produced only one undersized follicle on the challenge dose of Clomid. Even uneducated as I was then, I knew that was bad. I started crying and barely held it together through the HSG, when the doctor told us that although my tubes were open, I had uterine fibroids that might interfere with a pregnancy. I remember my husband saying when I was still on the table, "She's already given up. Tell us, can she get pregnant?" The doctor looked at me with such pity in his eyes. "With her own eggs? Probably not. But let's see what her FSH is. I'll call you later today."

I was numb. We went to a restaurant and ate lunch; I managed only a few spoonfuls of soup. My husband offered to drive me to the mammogram, but I thought, "How much worse can this day get?" And he needed to pick up his son from Grandma's. So I drove myself. I got to the women's health center in the blackest of moods and filled out the paperwork. The receptionist called me up and said, "Now, we have to verify: Could you be pregnant?"

My heart twisted. I muttered, "No." The receptionist must have thought something was odd about my tone and body language, because she pressed, "You understand that x-rays can harm a fetus? Are you sure you're not pregnant?" I started crying -- again -- and burst out, "No! I'm not pregnant. I saw my uterus this morning and it was empty. It will always be empty because I'm infertile!"

Oookay. Psycho lady. They treated me very gently after that. I had the mammogram, got dressed, and waited. And waited. I wasn't all that surprised when they took me back in for the day's second ultrasound, this time on my top half, and told me I had a lump. I called my husband, and he said, "Oh, honey. I'll come get you..." But I told him there was no sense leaving my car stranded. I drove myself home, and by the time I walked in the door, I felt as if I'd been beaten. I went straight to bed. My husband came in and lay down beside me. He told me that the RE had called and my FSH was 40. I would never have a child with my own eggs, and he couldn't treat me further because his office did not have a donor egg program. I cried so hard I could barely breathe, and I remember saying to my husband, "I'm not me anymore."

When I got up that morning, I was a woman. I believed that my ovaries could start a child, my uterus could cradle one, and my breasts could suckle. By the time I went to bed, my ovaries were shrunken pits; my uterus bred fibroids and not babies; and my breast was possibly cancerous. In the span of one day, I had become an asexual thing. I felt deeply betrayed by my own body. By my self. (The breast lump, by the way, turned out to be benign.)

The next few months were grim. Besides delivering my doom, the CCT whacked my cycle and my hormones for two months afterward. Nights were a torture of hot flashes and sweats, and sex with my husband of six months? Puh-leeze. The whole idea, when I felt so unlovely, was faintly repulsive. I did it only when my calendar told me I must. I signed on with an equally pessimistic but more lenient RE who put me on Lupron to shrink my fibroids in preparation for myomectomy surgery. I had decided -- because I needed it to be so, and because the Internet is a Magic 8 ball; shake it enough and it will tell you anything -- that the doctors were wrong and that I could flog my ovaries into producing the fabled "one good egg."

We did two IUIs and one IVF, and miraculously, though I produced a pitiful one or two eggs each time on thousands of dollars worth of drugs, I became pregnant twice. But I lost both my babies, at 8 weeks and 9 weeks, after seeing slower than normal heartbeats. And if I thought I had reached the limits of self-hatred in my infertility, I had new depths to plumb after miscarriage. Real women, I told myself viciously, have healthy eggs to give their children. Real women can carry their babies to term. You are not a real woman.

And then I started to gain weight. You know what I'm talking about? Between the bloat-producing battery of drugs they gave me and the chocolate therapy I gave myself, the pounds started to creep on. Did I say creep? They practically leapt on me and wrestled me to the ground. Now, I look at my wedding pictures and then into the mirror, and I hardly recognize the person staring back at me with bleak eyes. Everywhere I turn, I'm confronted by gravid bellies for sale on eBay, or with lush, healthy young women who are so, well, young, that they've got to have eggs in there. I feel like an inferior life form.

Why should this be? I ask myself. If my liver were to die out from, say, an excess of tart New Zealand Chardonnay, or if I developed a stomach ulcer from hassling with my insurance company over IVF coverage, I would not allow those organ defects to affect my self-esteem. It would not even occur to me. So why is it different with my ovaries? Why, when we're not in the mood for His Softer Side and a man is behaving less than alpha, do we say, "Oh, just grow a pair!"

God, I wish I could. Gender is a part of us; it is our blood and bone, and because of this we are all, in some way, judged by our sexual characteristics. Although, I'm sorry, I can no longer scrape up any sympathy for small-breasted women. Between implants and Victoria's Secret push-ups, they're golden -- and God knows they'll have great racks when they get pregnant. Whereas, my ovaries are beyond rescue. My body simply cannot perform that most female of tasks: Conceiving and bearing a child.

Except...a small voice inside me whispers...except, that it can. If I allow myself to be still, and to peel away the layers of shame at my infertility, I come to this: Both men and women contribute sex cells to their children, but women do something extra. We nurture our babies within our own bodies. Even though my sex cells are damaged, I can still perform the one function that is unique to women.

And even if, in the end, I cannot do this, I will be a far better mother to any daughter that I adopt if I remember: There is more to a woman than her biology, and the greatest acts of motherhood are performed after a child is born.

So sing it, Shania. Maybe I'm a woman after all.

Books on donor egg

I have found relatively few books that deal exclusively with egg donation. In my list, I'm also including books of a more general nature if they have significant content devoted to egg donation or to the related treatment of donor insemination.

Please post if you know of another book that belongs on this list, or if you have comments on these books.

Mommy, Was Your Tummy Big?

Looks like a darling children's book! Can't wait to get it.

Having Your Baby Through Egg Donation

According to the publisher, the book "answers questions about age and pregnancy and parenting, about talking to children about their donor conception, about ethical and religious questions, about honesty vs. secrecy, about communicating with a parenting partner, and more in a compassionate, fully informed manner. Vignettes describing the decision-making and experience of others who have traveled this road to parenthood expand and exemplify research and philosophical resources.... It addresses such questions as: 'Should we choose adoption or egg donation?' and 'Should I ask my sister to donate and if so, how do I raise the subject with her?' and 'How do I evaluate a recruited-donor program?' I think it sounds like a winner.


Rewinding Your Biological Clock: Motherhood Late in Life : Options, Issues, and Emotions

Although I haven't read this book, from what is stated on Amazon it appears to be much more specific than what is indicated in the title. It includes technical information about assisted reproductive technologies (ART) as used in donor egg, interspersed with the fictional account of "Sarah," a 48-year-old woman who wants to have a child. Within this fictional account, some of the emotional and social issues surrounding DE are explored.

The book provides a broad overview of how menopausal or perimenopausal women can give birth, and devotes a final chapter to ethical issues. Reviews on Amazon are generally good, although one reviewer commented on the lack of coverage about the difficulty of Lupron downregulation therapy. I think I'll get this one. Thanks to Wessel for pointing me to this title!


Building Your Family Through Egg Donation: What You Will Want to Know About the Emotional Aspects : Including Disclosure vs. Secrecy and Guidelines for Telling Your Children

I highly recommend this booklet and its supplement, if you can get them. The booklet is no longer available through Amazon. I was lucky enough to obtain a copy directly from Dr. Friedeman, who met with me and my husband to evaluate our readiness to become donor egg parents. The booklet was first published in 1996, and Dr. Friedeman has also written a second pamphlet titled "Up-date on: 'Building Your Family Through Egg Donation.'" In that pamphlet is noted: "JOLANCE press books available through Baker and Taylor Books, selected bookstores or jfriedeman@fuse.net.

When her book was first written, Dr. Friedman had worked with approximately 150 prospective egg donor families, allowing her a unique insight into the concerns we have in common. Her book is sensitively written and adorably illustrated by her daughters. The first chapter is on egg donor recipients, with topics such as "What general questions do most prospective ovum donor families ask?" and "What are they most concerned about?" A second chapter covers "Psychological screening and assessment of egg donors," with topics "Directed (or related) donors" and "Anonymous donors." Other chapters cover stress, cryopreservation of embryos, and DE parents' concerns about bonding with their babies. A favorite part of the book for me was the chapter on bonding, where Dr. Friedeman concludes, "In my experience, the bonding of egg donor parents to their child is as heartfelt as it would be in any well-planned, fully biogenetic pregnancy."

A significant chapter covers disclosure, privacy, and secrecy issues, followed by a unique section titled "The gift." This section contains Dr. Friedeman's ideas on how parents favoring disclosure can share their egg donation origins with their children at different ages. This section was written in response to multiple requests from families who wanted tangible guidelines.

One of the strengths of Dr. Friedeman's work is her fair treatment of both sides of the "tell" and "don't tell" debate. She presents the main reasons stated to her by parents who are in favor of disclosure (the rights of the child to know his or her origins and the dangers of family secrets) as well as those who favor non-disclosure (concern for psychological harm to the child and the privacy rights of parents).

However, "don't tell" parents should know that Dr. Friedeman's update summarizes recent publications by RESOLVE, ASRM and others that are more in favor of disclosure. She relates that in 14 years as a consultant to fertility programs, she has met with thousands of couples and the number of couples planning to disclose is increasing compared with 10 years ago, to about 80% today. She notes, however, that many couples may be stating they will disclose because they believe it's the "right" answer to give in their evaluations, when in fact they may be planning secrecy. Dr. Friedeman acknowledges that to date, few children from egg donation have been interviewed to assess their feelings about their origins, and that much more research is needed in this area. I highly recommend these booklets. They are the next best thing to sitting down and talking directly to DE parents.

Experiences of Donor Conception: Parents, Offspring, and Donors Through the Years

Lorbach is mother to three children conceived using donor sperm, and works with the Donor Conception Support group of Australia. Her writing style is informal, interspersing her own commentary and summaries with quotes from parents who have used donor insemination, donor egg, or donor embryo. Her book draws on the experiences of 94 parents from Australia, New Zealand, Canada, the United States, and the United Kingdom to tell the story of donor conception. Chapters include: Male Infertility; Women's Infertility; Making the Decision to Use Donor Conception; Choosing a Donor; Donors; Telling Others; Treatment, Pregnancy, and Birth; To Tell or Not to Tell; Telling Our Children; After the Telling; Discussion with Donor Offspring; and Thoughts and Experiences of Donor Offspring.

When I was making the decision to use donor egg, this book was invaluable. In one way or another, it covered every issue that plagued me. Granted, it draws mainly on the experiences of couples using donor insemination. But because many of the social and psychological issues are identical between DI and DE, the book was right on target in many areas. In addition, it gave me what I had found nowhere else: The experiences of the children.

By definition, of course, Lorbach recounts the stories of children who know their biological origins, and that leads to my main criticism of the book: It is far from even-handed in its treatment of the "tell / don't tell" debate. The chapter "To Tell or Not to Tell" is heavily slanted toward the "tell" camp and awards only two paragraphs to parents who believe it is best for children not to know their method of conception. The book would have been much improved if the author had tried to locate parents who made this choice. She writes, "I have never spoken to a parent who was 100 percent sure about keeping the truth of donor conception from their child."

This is likely true, since parents who have decided not to disclose and are comfortable with and committed to their choice, are less likely to join an organization such as the Donor Conception Support group. Still, if you can get past Lorbach's bias in this area, the book excels in recounting the personal experiences of those who've used donor conception. My husband and I read the book separately and then discussed it. Our talks on this book allowed us to resolve most of the concerns we had about using donor egg.

Confessions of a Serial Egg Donor

I haven't read this one, but I probably will. Besides the roadkill fascination of a confessional and the blog-like insouciance of chapter titles such as "Laying Eggs," this book offers a serious point for consideration to prospective DE mothers: How much responsibility do we have toward these young women who offer us their eggs? The book rightly points out that the provision of eggs to we desperate masses has become a highly profitable industry -- an unregulated one, rife with the potential for abuse of both egg donors and egg recipients by unscrupulous clinics, agencies, and sinister "brokers" such as Derek's Ruth.

I nearly fainted with horror when I read in product reviews that as an impoverished college student, Julia Derek somehow managed to get a doctor to take eggs from her twelve times, to the point where her body started shutting down. As a future donor egg recipient, I'd like to believe -- and my clinic assures me -- that my donor is mainly motivated by the desire to help women like me, and that the money she'll receive is welcome but is no more than a fair compensation for her time, discomfort, and risk. Based on my clinic's policy of allowing a donor to participate no more than five times, and the fact that the fee my donor will receive is modest compared to others I've read about, I am confident that I am in no way taking advantage of this generous woman. Yet in reaching this conclusion, I'm completely at the mercy of my clinic and of the donor herself for the information they provide.

Derek's story does remind me of the extreme youth and economic vulnerability of some of these donors. At the ripe old age of 40, I find myself saying of any 21-year-old, regardless of her legal status or her maturity: She's just a baby. And she's someone's baby girl. We owe it to ourselves as future mothers to do whatever is in our power to ensure that our clinic's or agency's policies are sound and are being followed; and that our donor is someone who, while she might welcome the fee, is not wholly motivated by greed or--somehow worse--by need in making her gift to us.

Choosing Assisted Reproduction: Social, Emotional & Ethical Considerations

According to editorial reviews, this book covers the "medical, legal, ethical, and psychological implications of assisted reproductive technology (ART)." The first part of the book is devoted to treatments with one's own eggs, while the second part concerns third-party parenting options such as sperm donation, ovum donation, surrogacy, gestational care, and embryo donation. Apparently, the authors "provide guidelines and suggestions for openness with children born as a result of ART, strongly urging truth concerning genetic origins." Chapter Six is devoted exclusively to Ovum Donation, but based on the list of topics, it seems to cover the same ground as Glazer's new book, cited first in this article. I'll probably get this one at some point.

New Ways of Making Babies: The Case of Egg Donation (Medical Ethics)

I'm not planning to buy this one due to its high price tag of $56.95. According to the product description, it "discusses ethical, legal, and policy issues surrounding egg donation and new reproductive technologies, describes procedures at four egg-donation centers in the U.S., and presents a report and recommendations on oocyte donation by the National Advisory Board on Ethics in Reproduction. It contains a series of essays by numerous experts, with titles such as "Moral Concerns about Institutionalized Gamete Donation" and "What is Wrong with Commodification?" Might be worthwhile reading if I can find it at a library.


Helping the Stork: The Choices and Challenges of Donor Insemination

As the title indicates, this book concerns donor insemination, but I'm putting it on my list because I think so many of the parental and privacy concerns would be similar, and because the book is quoted or referenced in many articles that I've read. I'm always interested in "stories from many families who share their insights and experiences," and in particular, I'd like to read Chapter 8, "Changing Families, Different Challenges."

Lethal Secrets: The Psychology of Donor Insemination
by Annette Baran and Reuban Pannor

I can't find a lot of information on this book other than one review posted on Amazon that states it "takes a long range look at donor insemination by interviewing donor offspring, donors and parents years after the fact." Apparently this book is strongly in favor of disclosure to donor offspring.

The following books may be helpful for parents who have decided to tell their children about their donor egg origins:

Flight of the Stork: What Children Think (And When About Sex and Family Building)

A book for parents (not children) about where children think babies come from, illustrated with interviews with children. Bernstein identifies six stages of mental development and illustrates how children think about reproductive issues at each stage. The book apparently contains some information on adoption and assisted reproduction. This sounds like good reading for parents who've decided to disclose their child's origins to the child and need help figuring out how to do that in a way that makes sense to a young child.

Sometimes It Takes Three to Make a Baby
by Kate Bourne

This book sounds like just what I'll be looking for in a few years to share with my child: "An illustrated guide for young childen, explaining in simple language the process of egg donation." However, it looks like it will be tough to find this book. Sources online indicate it can be purchased from Melbourne IVF.

Let Me Explain: A Story About Donor Insemination

A book for children in which a little girl explains how she was conceived through artificial insemination and that although she has genes from her mother and a donor, her dad is her father. Reviews posted on Amazon are not 100% positive, but since books of this kind are few I decided to list it.

How Babies and Families Are Made: There Is More Than One Way!


This book has good reviews at Amazon and covers various ways that families are made (artificial insemination, IVF, adoption, stepchildren, and more). It does not appear that egg donation is mentioned specifically.


Mommy Did I Grow in Your Tummy?: Where Some Babies Come from

This book is no longer available through Amazon and the only used copy lists for $145. A book list at the Donor Conception Support Group site describes it as: "simply and sensitively written to help parents explain to young children about the different ways babies may be conceived, including IVF, egg and sperm donation, and surrogacy. It is well illustrated, and also describes adoption in an easy to understand way."