Hello Everyone. I see that thanks to Wessel and a caring offline friend, some of our latest news has made it online. I did not mean to leave this blog high and dry...but like a lot of first-time mothers, I had no idea how all-consuming it is to care for an infant. Now I know why my friends laughed at me when I talked about the "projects" I was going to get done around the house during my maternity leave!
Those first few weeks after we came home from the hospital were surreal. It seemed that no sooner had I finished feeding, catheterizing, diapering, and breast pumping...than it was time to start the whole thing over again. It was a labor of love for sure, yet labor it was. I got so sleep-deprived, I was hallucinating that the baby was in bed beside me one night and kept saying, "Here she is" to my husband and patting the covers. After that, he started taking one "night shift" so I could get some rest (grin).
Still, Madelyn seemed to be thriving and we had no idea what we were in for when we went on January 9th to Children's Hospital for our first myelomeningocele clinic. Spina bifida children have to see numerous doctors, and clinic day allows us to schedule all the visits the same day. The previous Thursday, we had noticed her making a sort of "whistling" sound when she was crying, but it went away when she calmed down and was not too loud, so we decided to wait until clinic to see a doctor about it. In fact, we'd nearly forgotten it and I was telling the pediatrician about Madelyn's severe diaper rash, when my husband remembered to mention the whistling sound.
To say that the professionals were concerned was an understatement -- they had Madelyn's neurosurgeon in the room in just a few minutes, and before we knew what was happening, Madelyn was being admitted to the hospital for a stay that ultimately lasted two weeks and three days.
It turns out that the whistling sound is called stridor, and we should have been watching for it all along as a symptom of Madelyn's Arnold Chiari II malformation.
The majority of spina bifida children have Chiari II, in which the brain stem extends past the base of the head, down into the spinal column. Of those children that have Chiari II, most are asymptomatic, and some may never know they have the condition. However, Chiari II is extremely scary for a spina bifida infant because, when the baby does have symptoms, these can be life-threatening. In infants, the symptoms can include vocal cord paralysis (which causes stridor) with blocked airway, swallowing difficulty, and respiratory problems. In older children, symptomatic Chiari II is not usually so serious, but it is the leading cause of death for spina bifida infants under the age of two years.
This was one of the main reasons why I wanted fetal surgery for Madelyn, since early data regarding the surgery suggested that closing a baby's lesion in utero might reverse the development of the Chiari II malformation in the fetus. This never happens in a full-term infant whose lesion is closed after birth, so if they prove this benefit of the surgery it will probably be routinely offered to women pregnant with spina bifida babies. But as you know, I failed to get the surgery for Madelyn and now she has symptomatic Chiari II. Have I mentioned the word "guilt" on this blog yet?
Anyway. Madelyn's first tests were to see whether her shunt was working properly. Scans did not show any significant enlargement of her ventricles, but our neurosurgeon is very thorough and chose to "tap" the shunt. This meant putting a needle through the skin of Madelyn's scalp and into the shunt, to see whether the fluid being drained by the shunt is flowing properly. In Madelyn's case, the fluid was flowing very slowly. The doctor theorized that fluid back-up was causing downward pressure on her brain stem, resulting in the stridor symptom.
So, on Tuesday night Madelyn underwent a "shunt revision" surgery, which is basically exploratory: The surgeon goes in to inspect the shunt and tubing to find and correct the blockage. Among those children who have shunts, this surgery is fairly common -- although unfortunately for Madelyn, kids who have one shunt malfunction tend to have more than one, so we can expect to repeat this surgery again; perhaps many times in her life. Our doctor found that the small tube leading from Madelyn's brain to the shunt had clogged, and she was able to clear it.
The next few hospital days were spent waiting to see if the shunt correction would resolve Madelyn's symptoms. She was given steroids to decrease swelling around her brainstem, in hopes that this plus the shunt surgery would reverse her symptoms. The other alternative was a cervical laminectomy, in which pieces of bone would be removed from Madelyn's cervical vertebrae (making them a "U" shape instead of an "O" shape) in order to "decompress" the brainstem. This is a serious surgery with numerous risks, especially in an infant, and we wanted to avoid it if at all possible.
Meanwhile additional tests were done, and other problems surfaced, all related to Chiari II compression of the brain stem. Madelyn had a swallow study that showed she was aspirating some of her food into her lungs; a chest x-ray showed an area of aspiration pneumonia. Swallowing difficulties are a common symptom of brain stem compression. She also has gastric reflux, where her food "backwashes" up into her throat, causing pain and regurgitation.
A scope of Madelyn's throat showed the partial paralysis of her vocal cords, which was of great concern to us. As it was, Madelyn had a sufficient airway though she made a racket while breathing; but if the symptom progressed and her vocal cords became paralyzed in the "closed" position, she might need a tracheotomy to breathe, or in the long-term a cordectomy, where they would remove one vocal cord to provide a better airway. Worst of all, one night a pediatric resident noticed long periods of sleep apnea, where Madelyn would stop breathing in her sleep for as long as eight seconds.
It was all very frightening, especially when I started reading about symptomatic Chiari II on the Internet and saw some very scary statistics. One source said that about 23% of infants with severe symptoms die before age 2, mainly from respiratory arrest or pneumonia. There was one day that I spent mostly in tears, as the bad news came in waves and I became desperately, if irrationally, afraid for Madelyn's life. I was much relieved when the neurosurgeon told us that in her view Madelyn was a "moderate" case for symptomatic Chiari II, and that "She's not one of those I'm afraid I'll lose in the first couple years." My father, a pediatrician, was worried enough that he drove up to see us from several states away...I was glad to have him with us, but scared that he was scared enough to make the drive.
After we'd been in the hospital for a week and four days, the neurosurgeon said we would not need the decompression surgery. There had been some improvement in Madelyn's stridor from the shunt surgery and steroids. One last test result remained to come back -- a sleep study done to measure her apnea. My father had gone home, and I was packed and waiting for my husband to return from the pharmacy where he was filling Madelyn's prescriptions, when a couple of nurses stopped me in the hall and said, "You're not going home tonight."
The sleep study had come back showing that Madelyn had over 120 apneic episodes during the night, and the pulmonary doctors were strongly urging the neurosurgeon to perform the decompression surgery. She consulted with us and after asking a lot of questions about the potential risks, benefits, and outcome, we consented to the surgery. I spent hours crying and cradling Madelyn. Could we really lose this child we'd struggled so hard for and loved so deeply? I knew that we could. Life truly can be that cruel, that pitiless.
The next day was fairly awful -- we were an "add on" to the surgery schedule, meaning they would take us whenever they got a free operating room -- and Madelyn had to be "NPO," or "nothing by mouth" all that time. She's a baby who likes her food; between hunger and the six "sticks" it took to start her IV, she was a very unhappy baby by the time they came for us in early evening. It was the hardest thing I have ever done, giving my baby into the arms of the nurse to be carried to the operating room. I was so afraid I would never see Madelyn again.
My wonderful father turned his car around and drove 600 miles again to be with us, arriving just as we settled down in the waiting room. My mother came as well -- she's only an hour or so from us -- so I had lots of support to get through the wait. They'd told us the surgery would last two to three hours, and between snacks and small talk and CNN on TV, I did all right for the first two.
Then I got out my worry stone, and sat down in a rocker where I could work off some energy. At the three-hour mark, I took my mother's worry stone so I could have one for each hand. And at three and a half hours, I was going bughouse. My husband looked into my eyes and said, "Want me to go check?" I just nodded. By then it was late evening and the volunteer manning the waiting room had gone home, so my husband patiently knocked on a connecting door until someone came, and then asked for a status. The word came back that Madelyn was doing fine, and they were "closing the dura."
We thought that we were home free at that point, but the surgery lasted another two and a half hours. By the last bit I was fighting back hysteria; I was sure something had gone wrong and we had lost Madelyn. My husband, stoic that he is, told me later that he had thought the same thing. Then the phone on the volunteer's desk rang. We all looked at each other...should we answer it? They'd told us a nurse would come out to us with news. It stopped ringing, then a few minutes later rang again. This time my husband grabbed it.
Have you ever had a moment when everything slows down; when your mind takes an indelible snapshot of all that you see and hear and even smell around you, and you know that your life will be forever divided into the time before that moment, and the time after? I'll never forget watching my husband's face as he listened, and knowing that Madelyn was safe.
The surgeon came out to talk to us and explained that the surgery had taken twice as long as normal because there was a great deal more compression of the brain stem than she had anticipated from the MRI images. She had had to remove bone from the first five cervical vertebrae, not just the first three. But she said, "That's actually a hopeful sign, because the more there is to decompress, the more hope there is that the surgery will relieve Madelyn's symptoms." One grim statistic she'd given us was that only 60% of children who have the surgery see any benefit from it.
Our baby looked so tiny and fragile in her bed in the pediatric intensive care unit (PICU). She still had a ventilator tube down her throat, and I've never seen anything so heart-wrenching as that little face scrunched up to cry, with no sound coming out. But her little arms were waving and her eyes were open. We were given a sleeping cubicle on the floor -- just large enough for a twin bed and a couch -- and in the PICU Madelyn had her own nurse, so we felt safe leaving her to get a few hours' sleep. By the next morning she still needed the ventilator and her heart rate had dropped a few times in the night, so they decided to keep her in the PICU that day. It seemed to be taking her some time to throw off the anesthetic, and she did seem to be in some pain -- she has a long incision down the back of her neck.
The next night my father volunteered to stay with Madelyn on the floor and my husband and I got to spend a night at a nearby hotel that offers a "caring rate" to families with children in the hospital. It was heaven to sleep in a "real" bed with a "real" shower! Later that day Madelyn had improved enough to move back to our room on the pediatric neurology floor, and her uncles came to see her. They were surprised at how good she looked for a baby who'd just had brain surgery!
We stayed in the hospital three more days for monitoring, and Madelyn was amazingly improved -- we heard stridor only very occasionally, and she was more awake and alert than she'd ever been. A follow-up swallow study showed that she was no longer aspirating her food, and the doctors felt completely safe sending her home with us.
Unfortunately, since we've had her home we've heard the stridor coming back a little bit, and we're a little worried. We have been told it could be from surgical swelling and we should just keep an eye on her...but last night I was so stressed out, I felt short of breath. It is a crushing load, knowing that if I miss the early symptoms of a shunt malfunction or of brainstem compression, Madelyn could be permanently harmed. Or worse. In early stages the symptoms are so subtle. Lethargy, irritability -- how much sleep is too much? How much crying is too much? And the stridor is hard to quantify because it comes and goes.
Somehow I'm going to have to find a way to mother this child and keep her safe without all the joy going out of it. And my return to work is only two weeks away. Please send us prayers if you can.
Friday, January 27, 2006
Wednesday, December 07, 2005
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.
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.
Thursday, October 13, 2005
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.
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.
Wednesday, August 24, 2005
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.
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.
Wednesday, August 17, 2005
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.
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.
Friday, August 05, 2005
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.
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.
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