Warning: The content of today's entry might strike your ear as, well, whining. I'm Mommy to a sweet, beautiful baby when so many of my infertile compatriots are still struggling toward motherhood. I do know how very lucky I am to have my Maddy.
But.
It really is always something, with a special-needs child. Maybe with any child -- my experience is limited, since Madelyn is my firstborn. But there always seems to be some issue we're struggling with. Right now we're getting unusually high catheterization volumes, meaning she isn't wetting her diaper on her own as much as she was. And she's having trouble moving her bowels; we get either too much or too little.
Bowel and bladder problems are common and we were warned about them, but nobody told me how aggravating it is to figure out what's wrong, what to do about it, whether what you're doing is working or not working, and to communicate same to the nurses, who will talk to the doctors, who will talk to the nurses, who will get back to you on some unspecified date, all while your child is suffering. And if anyone had told me that my husband and I would have half-hour conversations about whether a diaper is "damp" or "wet"--!
So I'm on the phone all the time with the urology nurses, and with neurosurgery too, because it can't just be as simple as dealing with the diaper issues and moving on. No, changes in bowel and bladder function can be symptomatic of a problem with Madelyn's spine. Every little question requires a long game of phone tag and most often a trip to the pediatrician's office, just in case. In case what, you ask? In case Madelyn's fussiness and vomiting are symptomatic for shunt malfunction. (Answer: No, she's got the flu, you foolish Mommy.) In case her huge cath volumes and constipation are symptomatic for spinal cord tethering. (Answer: Even if it is, we won't do surgery until she's four to six years old. Talk to Urology and don't darken our door until August.)
It is always something. We're muddling along, and we get good news now and then -- her sleep study showed greatly improved statistics for her apnea; her vocal cords are completely normal, and so on. But then we'll get a diagnosis of torticollis and it's off to physical therapy once a week, where the advice is frustratingly vague: "Hold her in the opposite arm when you feed her."
Or it will suddenly occur to me that the medications she was started on in January were dosed according to her weight then, when is roughly half what she weighs now. No one has followed up with us on those medications. So I'll start new games of phone tag, and it will turn out that yes, she should have had a new dose of the antibiotic. You know, the one that is protecting her kidneys from permanent damage. "Oh, didn't Dr. E--- talk to you about that?"
No. He didn't.
My stomach is churning even as I write. I can't find words adequate to describe the quality of the worry that I feel, all the time. I've written before that worry is like little rat teeth. But this worry--that I'll overlook or mismanage something crucial to my baby's health--is like a millstone sitting on my chest, slooowwly crushing the breath out of me. Because I've missed things before. I didn't recognize stridor for what it was. And when she was extra-sleepy that one weekend, no alarm bells went off -- I remember being happy that she was sleeping longer than normal, so I could get some sleep myself. Madelyn got early, effective treatment for her partially clogged shunt (sleepiness) and her brain stem compression (stridor) through sheer, dumb luck. Not through her mother's vigilance or knowledge.
It haunts me. I know it'll happen again...other than stridor, the symptoms we are to watch for are just too vague, and too similar to normal baby behavior, for even a watchful parent to easily catch (fussy, sleepy, spitting up, etc.) Here's the bit that drives me crazy: You'll be talking to a doctor, trying to describe how you think she's fussy, but not too fussy, and she's maybe a little sleepy but it's hard to tell, and she could be teething, but there was that weird sound she made.... The whole time you're expecting him to excuse himself and call the cops to report you for munchausen by proxy because this is the third visit to his office in a month.
He'll listen to your whole ramble and he'll say, earnestly, "Well, you know your baby. Do you think this is unusual for her? The Mom is usually right, you know!" And here he grins at you, to show that he's on your team.
Whereupon I want to pounce on him, grab him by the tie, and thump his head against the nearest hard surface, "Look, Doctor, I brought her in here to get your educated opinion, not to tell you mine. If I thought she had a shunt malfunction we'd be at the hospital, wouldn't we? Instead we're screwing around at the pediatrician's office because I don't know what I'm doing. So if you wouldn't mind not adding to my load of guilt and my doubts about my mothering ability? And if you could tell me whether my daughter needs another shunt revision surgery so I can get that on my calendar? Thanks."
Grrr.
I wish I had a ten-spot for every time some doctor has said some version of the above to me: that I know Madelyn best and so I should tell them when there's a serious issue. It's even printed in our spina bifida notebook they sent home from the hospital. On the face of it, it sounds great; the professionals are supposed to pay attention to the child's closest caregiver. But in practice, it's not so great. You go in with vague concerns and -- ping? pong! -- you get vague answers back. And as a bonus you get a reminder that if something is wrong and it isn't identified, it's your fault. Because of course, the mother ought to know.
And then there are the days when I must don my Billing Clerk hat: I actually laughed out loud when I got the hospital bill for our January adventure...before insurance grudgingly coughed up, we owed nearly twice the value of my first condominium. Or, my Scheduling Clerk hat: There is a yellow post-it on the side of my monitor that reads "M. FU ears, sleep, PT? Ask." It is in my handwriting. Hmm. My ways are deep, very deep, and none shall know them.
So, it's always something. And I worry. It's slowly getting to me...I'm irritable, scatterbrained (more than usual). I've started waking up with an excruciating headache every day, and I have finally twigged to the fact that I'm grinding my teeth at night. This has happened randomly in my life as a sort of exam-week thing. But Maddy's only six months old and I've got what, about twenty years worth of "exams"? I've got to learn to cope with this.
Tonight we're going to our first spina bifida parents support group. I am trying not to expect too much...I'll probably be too shy to vent much, at first. But I am dearly hoping somebody, sometime can tell me how to cope with this steady, grinding pressure without falling apart. I need help.
Monday, May 15, 2006
Thursday, May 11, 2006
Sweet Maddy
Our darling baby is thriving, and keeping Mommy and Daddy very busy. She wakes up every morning at about six a.m., a half an hour before my alarm is set, and starts making her sweet baby sounds. Not crying, just talking and singing to herself. So each day begins with Madelyn's little voice in my ear, and I have never been so eager to get out of bed and catch the first smile of the day. Maddy learned to smile about a month ago, and like all babies she smiles with her whole body. Her little arms wave and her eyes light up, and of course there's that gummy grin.
Medically we are just dealing with the everyday challenges. Like all spina bifida kids she has bowel and bladder issues that we're trying to figure out, and she has started physical therapy. Today she rolled over all by herself! Maddy hates "tummy time" so I wasn't surprised to see her finally roll over, just to get off her stomach. Right now we're working on building flexibility and strength in her neck; she's not as strong on the left as the right, and it's throwing her balance off as she tries to learn to sit up. It won't be long -- she does "baby crunches" all the time, she's so eager to be sitting up.
I asked about her legs and the therapist says she'll never been in a wheelchair! She might need some bracing for her ankles, but her legs are very strong and she can flex her feet and wiggle her toes. The therapist says we'll have to wait for more milestones before we see what her mobility problems might be.
In a couple of weeks we start solid food...and I cry every time I buy a new size of Huggies. It all goes so fast. And every day I love her more...it's laughable, that I ever worried I wouldn't love her because she came from a donor egg. She's my own sweet dear, and I can't imagine life without her. So many people have told me that she looks just like her Mommy, and I just give them a satisfied smile and say, "Thank you."
As for me, I'm getting back into the swing of things at work. I found a babysitter to come to our house every day and I work from here, so my commute is 20 seconds up the stairs, and I can go down and visit Maddy whenever I want. It works well because the family needs my salary, especially with Maddy's medical bills in the mix, yet I don't miss anything with her and I can supervise her catheterizations. I am incredibly lucky to have this arrangement. Someday I might want to go part-time because Maddy does have a lot of doctor appointments and I end up working nights to make up the time, but what we're doing is working for now.
My big goal now that I've got the Mommy routine more or less under control, is to lose some weight. But I am lazy and sedentary by nature, and I've got a husband who thinks I'm gorgeous at any weight -- yes, I do know how lucky I am! -- so it's hard to stay out of the Oreo package. Well, it's summer and we'll get out for walks. I'd like to be twenty pounds thinner by the end of August. (There, I have made a public commitment...we'll see how it goes!)
Medically we are just dealing with the everyday challenges. Like all spina bifida kids she has bowel and bladder issues that we're trying to figure out, and she has started physical therapy. Today she rolled over all by herself! Maddy hates "tummy time" so I wasn't surprised to see her finally roll over, just to get off her stomach. Right now we're working on building flexibility and strength in her neck; she's not as strong on the left as the right, and it's throwing her balance off as she tries to learn to sit up. It won't be long -- she does "baby crunches" all the time, she's so eager to be sitting up.
I asked about her legs and the therapist says she'll never been in a wheelchair! She might need some bracing for her ankles, but her legs are very strong and she can flex her feet and wiggle her toes. The therapist says we'll have to wait for more milestones before we see what her mobility problems might be.
In a couple of weeks we start solid food...and I cry every time I buy a new size of Huggies. It all goes so fast. And every day I love her more...it's laughable, that I ever worried I wouldn't love her because she came from a donor egg. She's my own sweet dear, and I can't imagine life without her. So many people have told me that she looks just like her Mommy, and I just give them a satisfied smile and say, "Thank you."
As for me, I'm getting back into the swing of things at work. I found a babysitter to come to our house every day and I work from here, so my commute is 20 seconds up the stairs, and I can go down and visit Maddy whenever I want. It works well because the family needs my salary, especially with Maddy's medical bills in the mix, yet I don't miss anything with her and I can supervise her catheterizations. I am incredibly lucky to have this arrangement. Someday I might want to go part-time because Maddy does have a lot of doctor appointments and I end up working nights to make up the time, but what we're doing is working for now.
My big goal now that I've got the Mommy routine more or less under control, is to lose some weight. But I am lazy and sedentary by nature, and I've got a husband who thinks I'm gorgeous at any weight -- yes, I do know how lucky I am! -- so it's hard to stay out of the Oreo package. Well, it's summer and we'll get out for walks. I'd like to be twenty pounds thinner by the end of August. (There, I have made a public commitment...we'll see how it goes!)
Monday, February 06, 2006
Those eyes have it!
Madelyn can see. Madelyn can see.
She's sleeping now. I just gave her a bottle. Afterward I sat in the rocker and held her for a long time, listening to her baby grunts and squeaks; loving the way she snuggles into the curve of my arms, as if I'm all she will ever want or need. And I let the dark future I'd imagined for her dissolve and fade away. Madelyn can see.
The ophthalmologist said she is, in fact, delayed -- not quite where she should be for a 10-week-old. But he said, "I'd more surprised if her vision were normal, given all that she's been through." Her eye structures and optic nerves were fine, and he said she does react to light with "primitive responses."
He thought there were times during the exam when she was focusing on faces and objects. (My husband and I really don't see this in here, but obviously this doctor has more experience!) He said we should find ways to stimulate her vision using high-contrast toys. He also said, "I've seen hundreds of blind babies, and she doesn't act like she's blind."
So, we'll have another checkup in two months, and meanwhile go on to the next crisis--
Kidding. Right now all is well. And, th-th-th-that's all for tonight, my wonderful friends. I've got a baby to cherish.
She's sleeping now. I just gave her a bottle. Afterward I sat in the rocker and held her for a long time, listening to her baby grunts and squeaks; loving the way she snuggles into the curve of my arms, as if I'm all she will ever want or need. And I let the dark future I'd imagined for her dissolve and fade away. Madelyn can see.
The ophthalmologist said she is, in fact, delayed -- not quite where she should be for a 10-week-old. But he said, "I'd more surprised if her vision were normal, given all that she's been through." Her eye structures and optic nerves were fine, and he said she does react to light with "primitive responses."
He thought there were times during the exam when she was focusing on faces and objects. (My husband and I really don't see this in here, but obviously this doctor has more experience!) He said we should find ways to stimulate her vision using high-contrast toys. He also said, "I've seen hundreds of blind babies, and she doesn't act like she's blind."
So, we'll have another checkup in two months, and meanwhile go on to the next crisis--
Kidding. Right now all is well. And, th-th-th-that's all for tonight, my wonderful friends. I've got a baby to cherish.
Friday, February 03, 2006
I'm afraid
That's an understatement. I'm climbing the walls, I'm so scared and heartbroken.
I think Madelyn is blind.
A couple of days ago after I had given Madelyn a bottle, I tried to get her to smile at me. At nine weeks, she ought to be starting "social smiles." I put my face close to hers and chanted, "Can this baby smile for Mama? Let me see your smile, sweet Maddy!"
Not only didn't she smile, she didn't even seem to see me. I tried the thing I've seen the professionals do, where you pass one finger back and forth across the baby's field of vision, to see if her eyes would track the motion. They didn't. Hmm...
I asked my husband what he thought, and he agreed that it seemed odd. We both thought we remembered Madelyn tracking with her eyes, prior to surgery. He tried using a lighter (of course, I'm like, "Don't set the baby on fire!") in a darkened room to see if Maddy would track that. Again, she didn't seem to see the light at all. But, her pediatrician had said she would likely be delayed in her milestones due to all that she's been through, and very young babies can't see very well. We weren't sure.
So yesterday we saw Madelyn's neurosurgeon. I had called and asked to move Maddy's follow-up appointment earlier because she seemed to be sleeping a lot, and we were hearing more stridor when she cried, making me fear another shunt malfunction. But the CAT scan of Madelyn's head showed improved ventricle size. The neurosurgeon also tapped the shunt to verify that the fluid was flowing appropriately. The fluid was yellow-colored, which isn't a good thing, but the doctor said that since Madelyn doesn't have a fever it's probably not an infection. When blood breaks down, its proteins can cause a yellow color in clear fluid, so the color of the spinal fluid is probably a post-surgical, transitory thing. They'll culture it to make sure.
Of course, I asked the neurosurgeon about Madelyn's vision. She tried the tracking thing as well -- no joy -- and then she did another test, hard to describe: She made her hand into a kind of "stop" position, palm flat and fingers turned up -- just like one of the Supremes backing up Diana Ross! -- and then pushed her hand straight at Madelyn's face very fast, stopping just short of her nose.
Madelyn didn't blink.
I kind of knew then. The neurosurgeon wrinkled up her brow, and muttered, "Madelyn, Madelyn..." in just the same tone I use when I'm worried. Then she asked her nurse practitioner to get us an opthalmology appointment. She was very calm about it, but still.... All last night I tried not to think about it, but it was there, under the surface.
Today I had a few minutes to Google. If you enter "blindness spinal surgery" you are, if you're me anyway, in for a shock. Of the infinitesimaly small number of people who get post-operative blindness, a high proportion of them have had spinal surgery. Also, anemia and a long time on the table are recognized risk factors, both of which Madelyn had. I tried off and on all day to get Madelyn to see me, and I don't think she can. I think she's stone blind.
By mid-day I hadn't heard from the hospital, so I called and applied the thumb-screws, in my nice-but-hysterical-don't-mess-with-me way, and got an opthalmology appointment for Monday at 9:40 a.m. That in itself told me there was a problem. You can't get in to see a doctor that fast anywhere at that hospital, unless someone on the inside called them up and said, "Hey, can you please see this baby who's gone blind since we performed surgery?" The ass-covering has begun.
I feel sick. I'm so afraid. How much more can we take? How much more does this sweet little baby have to suffer? I hate God today. I hate myself. But I love my girl, so much. I know other people have gone through things like this -- I know -- but that doesn't make this agony easier to bear. I can't look into those big brown eyes without sobbing.
Maybe I'm crazy, maybe it's all a mistake and she's just delayed because she's had so many surgeries. But I don't think so. We'll know Monday. Please pray for us.
I think Madelyn is blind.
A couple of days ago after I had given Madelyn a bottle, I tried to get her to smile at me. At nine weeks, she ought to be starting "social smiles." I put my face close to hers and chanted, "Can this baby smile for Mama? Let me see your smile, sweet Maddy!"
Not only didn't she smile, she didn't even seem to see me. I tried the thing I've seen the professionals do, where you pass one finger back and forth across the baby's field of vision, to see if her eyes would track the motion. They didn't. Hmm...
I asked my husband what he thought, and he agreed that it seemed odd. We both thought we remembered Madelyn tracking with her eyes, prior to surgery. He tried using a lighter (of course, I'm like, "Don't set the baby on fire!") in a darkened room to see if Maddy would track that. Again, she didn't seem to see the light at all. But, her pediatrician had said she would likely be delayed in her milestones due to all that she's been through, and very young babies can't see very well. We weren't sure.
So yesterday we saw Madelyn's neurosurgeon. I had called and asked to move Maddy's follow-up appointment earlier because she seemed to be sleeping a lot, and we were hearing more stridor when she cried, making me fear another shunt malfunction. But the CAT scan of Madelyn's head showed improved ventricle size. The neurosurgeon also tapped the shunt to verify that the fluid was flowing appropriately. The fluid was yellow-colored, which isn't a good thing, but the doctor said that since Madelyn doesn't have a fever it's probably not an infection. When blood breaks down, its proteins can cause a yellow color in clear fluid, so the color of the spinal fluid is probably a post-surgical, transitory thing. They'll culture it to make sure.
Of course, I asked the neurosurgeon about Madelyn's vision. She tried the tracking thing as well -- no joy -- and then she did another test, hard to describe: She made her hand into a kind of "stop" position, palm flat and fingers turned up -- just like one of the Supremes backing up Diana Ross! -- and then pushed her hand straight at Madelyn's face very fast, stopping just short of her nose.
Madelyn didn't blink.
I kind of knew then. The neurosurgeon wrinkled up her brow, and muttered, "Madelyn, Madelyn..." in just the same tone I use when I'm worried. Then she asked her nurse practitioner to get us an opthalmology appointment. She was very calm about it, but still.... All last night I tried not to think about it, but it was there, under the surface.
Today I had a few minutes to Google. If you enter "blindness spinal surgery" you are, if you're me anyway, in for a shock. Of the infinitesimaly small number of people who get post-operative blindness, a high proportion of them have had spinal surgery. Also, anemia and a long time on the table are recognized risk factors, both of which Madelyn had. I tried off and on all day to get Madelyn to see me, and I don't think she can. I think she's stone blind.
By mid-day I hadn't heard from the hospital, so I called and applied the thumb-screws, in my nice-but-hysterical-don't-mess-with-me way, and got an opthalmology appointment for Monday at 9:40 a.m. That in itself told me there was a problem. You can't get in to see a doctor that fast anywhere at that hospital, unless someone on the inside called them up and said, "Hey, can you please see this baby who's gone blind since we performed surgery?" The ass-covering has begun.
I feel sick. I'm so afraid. How much more can we take? How much more does this sweet little baby have to suffer? I hate God today. I hate myself. But I love my girl, so much. I know other people have gone through things like this -- I know -- but that doesn't make this agony easier to bear. I can't look into those big brown eyes without sobbing.
Maybe I'm crazy, maybe it's all a mistake and she's just delayed because she's had so many surgeries. But I don't think so. We'll know Monday. Please pray for us.
Friday, January 27, 2006
Hard times
Hello Everyone. I see that thanks to Wessel and a caring offline friend, some of our latest news has made it online. I did not mean to leave this blog high and dry...but like a lot of first-time mothers, I had no idea how all-consuming it is to care for an infant. Now I know why my friends laughed at me when I talked about the "projects" I was going to get done around the house during my maternity leave!
Those first few weeks after we came home from the hospital were surreal. It seemed that no sooner had I finished feeding, catheterizing, diapering, and breast pumping...than it was time to start the whole thing over again. It was a labor of love for sure, yet labor it was. I got so sleep-deprived, I was hallucinating that the baby was in bed beside me one night and kept saying, "Here she is" to my husband and patting the covers. After that, he started taking one "night shift" so I could get some rest (grin).
Still, Madelyn seemed to be thriving and we had no idea what we were in for when we went on January 9th to Children's Hospital for our first myelomeningocele clinic. Spina bifida children have to see numerous doctors, and clinic day allows us to schedule all the visits the same day. The previous Thursday, we had noticed her making a sort of "whistling" sound when she was crying, but it went away when she calmed down and was not too loud, so we decided to wait until clinic to see a doctor about it. In fact, we'd nearly forgotten it and I was telling the pediatrician about Madelyn's severe diaper rash, when my husband remembered to mention the whistling sound.
To say that the professionals were concerned was an understatement -- they had Madelyn's neurosurgeon in the room in just a few minutes, and before we knew what was happening, Madelyn was being admitted to the hospital for a stay that ultimately lasted two weeks and three days.
It turns out that the whistling sound is called stridor, and we should have been watching for it all along as a symptom of Madelyn's Arnold Chiari II malformation.
The majority of spina bifida children have Chiari II, in which the brain stem extends past the base of the head, down into the spinal column. Of those children that have Chiari II, most are asymptomatic, and some may never know they have the condition. However, Chiari II is extremely scary for a spina bifida infant because, when the baby does have symptoms, these can be life-threatening. In infants, the symptoms can include vocal cord paralysis (which causes stridor) with blocked airway, swallowing difficulty, and respiratory problems. In older children, symptomatic Chiari II is not usually so serious, but it is the leading cause of death for spina bifida infants under the age of two years.
This was one of the main reasons why I wanted fetal surgery for Madelyn, since early data regarding the surgery suggested that closing a baby's lesion in utero might reverse the development of the Chiari II malformation in the fetus. This never happens in a full-term infant whose lesion is closed after birth, so if they prove this benefit of the surgery it will probably be routinely offered to women pregnant with spina bifida babies. But as you know, I failed to get the surgery for Madelyn and now she has symptomatic Chiari II. Have I mentioned the word "guilt" on this blog yet?
Anyway. Madelyn's first tests were to see whether her shunt was working properly. Scans did not show any significant enlargement of her ventricles, but our neurosurgeon is very thorough and chose to "tap" the shunt. This meant putting a needle through the skin of Madelyn's scalp and into the shunt, to see whether the fluid being drained by the shunt is flowing properly. In Madelyn's case, the fluid was flowing very slowly. The doctor theorized that fluid back-up was causing downward pressure on her brain stem, resulting in the stridor symptom.
So, on Tuesday night Madelyn underwent a "shunt revision" surgery, which is basically exploratory: The surgeon goes in to inspect the shunt and tubing to find and correct the blockage. Among those children who have shunts, this surgery is fairly common -- although unfortunately for Madelyn, kids who have one shunt malfunction tend to have more than one, so we can expect to repeat this surgery again; perhaps many times in her life. Our doctor found that the small tube leading from Madelyn's brain to the shunt had clogged, and she was able to clear it.
The next few hospital days were spent waiting to see if the shunt correction would resolve Madelyn's symptoms. She was given steroids to decrease swelling around her brainstem, in hopes that this plus the shunt surgery would reverse her symptoms. The other alternative was a cervical laminectomy, in which pieces of bone would be removed from Madelyn's cervical vertebrae (making them a "U" shape instead of an "O" shape) in order to "decompress" the brainstem. This is a serious surgery with numerous risks, especially in an infant, and we wanted to avoid it if at all possible.
Meanwhile additional tests were done, and other problems surfaced, all related to Chiari II compression of the brain stem. Madelyn had a swallow study that showed she was aspirating some of her food into her lungs; a chest x-ray showed an area of aspiration pneumonia. Swallowing difficulties are a common symptom of brain stem compression. She also has gastric reflux, where her food "backwashes" up into her throat, causing pain and regurgitation.
A scope of Madelyn's throat showed the partial paralysis of her vocal cords, which was of great concern to us. As it was, Madelyn had a sufficient airway though she made a racket while breathing; but if the symptom progressed and her vocal cords became paralyzed in the "closed" position, she might need a tracheotomy to breathe, or in the long-term a cordectomy, where they would remove one vocal cord to provide a better airway. Worst of all, one night a pediatric resident noticed long periods of sleep apnea, where Madelyn would stop breathing in her sleep for as long as eight seconds.
It was all very frightening, especially when I started reading about symptomatic Chiari II on the Internet and saw some very scary statistics. One source said that about 23% of infants with severe symptoms die before age 2, mainly from respiratory arrest or pneumonia. There was one day that I spent mostly in tears, as the bad news came in waves and I became desperately, if irrationally, afraid for Madelyn's life. I was much relieved when the neurosurgeon told us that in her view Madelyn was a "moderate" case for symptomatic Chiari II, and that "She's not one of those I'm afraid I'll lose in the first couple years." My father, a pediatrician, was worried enough that he drove up to see us from several states away...I was glad to have him with us, but scared that he was scared enough to make the drive.
After we'd been in the hospital for a week and four days, the neurosurgeon said we would not need the decompression surgery. There had been some improvement in Madelyn's stridor from the shunt surgery and steroids. One last test result remained to come back -- a sleep study done to measure her apnea. My father had gone home, and I was packed and waiting for my husband to return from the pharmacy where he was filling Madelyn's prescriptions, when a couple of nurses stopped me in the hall and said, "You're not going home tonight."
The sleep study had come back showing that Madelyn had over 120 apneic episodes during the night, and the pulmonary doctors were strongly urging the neurosurgeon to perform the decompression surgery. She consulted with us and after asking a lot of questions about the potential risks, benefits, and outcome, we consented to the surgery. I spent hours crying and cradling Madelyn. Could we really lose this child we'd struggled so hard for and loved so deeply? I knew that we could. Life truly can be that cruel, that pitiless.
The next day was fairly awful -- we were an "add on" to the surgery schedule, meaning they would take us whenever they got a free operating room -- and Madelyn had to be "NPO," or "nothing by mouth" all that time. She's a baby who likes her food; between hunger and the six "sticks" it took to start her IV, she was a very unhappy baby by the time they came for us in early evening. It was the hardest thing I have ever done, giving my baby into the arms of the nurse to be carried to the operating room. I was so afraid I would never see Madelyn again.
My wonderful father turned his car around and drove 600 miles again to be with us, arriving just as we settled down in the waiting room. My mother came as well -- she's only an hour or so from us -- so I had lots of support to get through the wait. They'd told us the surgery would last two to three hours, and between snacks and small talk and CNN on TV, I did all right for the first two.
Then I got out my worry stone, and sat down in a rocker where I could work off some energy. At the three-hour mark, I took my mother's worry stone so I could have one for each hand. And at three and a half hours, I was going bughouse. My husband looked into my eyes and said, "Want me to go check?" I just nodded. By then it was late evening and the volunteer manning the waiting room had gone home, so my husband patiently knocked on a connecting door until someone came, and then asked for a status. The word came back that Madelyn was doing fine, and they were "closing the dura."
We thought that we were home free at that point, but the surgery lasted another two and a half hours. By the last bit I was fighting back hysteria; I was sure something had gone wrong and we had lost Madelyn. My husband, stoic that he is, told me later that he had thought the same thing. Then the phone on the volunteer's desk rang. We all looked at each other...should we answer it? They'd told us a nurse would come out to us with news. It stopped ringing, then a few minutes later rang again. This time my husband grabbed it.
Have you ever had a moment when everything slows down; when your mind takes an indelible snapshot of all that you see and hear and even smell around you, and you know that your life will be forever divided into the time before that moment, and the time after? I'll never forget watching my husband's face as he listened, and knowing that Madelyn was safe.
The surgeon came out to talk to us and explained that the surgery had taken twice as long as normal because there was a great deal more compression of the brain stem than she had anticipated from the MRI images. She had had to remove bone from the first five cervical vertebrae, not just the first three. But she said, "That's actually a hopeful sign, because the more there is to decompress, the more hope there is that the surgery will relieve Madelyn's symptoms." One grim statistic she'd given us was that only 60% of children who have the surgery see any benefit from it.
Our baby looked so tiny and fragile in her bed in the pediatric intensive care unit (PICU). She still had a ventilator tube down her throat, and I've never seen anything so heart-wrenching as that little face scrunched up to cry, with no sound coming out. But her little arms were waving and her eyes were open. We were given a sleeping cubicle on the floor -- just large enough for a twin bed and a couch -- and in the PICU Madelyn had her own nurse, so we felt safe leaving her to get a few hours' sleep. By the next morning she still needed the ventilator and her heart rate had dropped a few times in the night, so they decided to keep her in the PICU that day. It seemed to be taking her some time to throw off the anesthetic, and she did seem to be in some pain -- she has a long incision down the back of her neck.
The next night my father volunteered to stay with Madelyn on the floor and my husband and I got to spend a night at a nearby hotel that offers a "caring rate" to families with children in the hospital. It was heaven to sleep in a "real" bed with a "real" shower! Later that day Madelyn had improved enough to move back to our room on the pediatric neurology floor, and her uncles came to see her. They were surprised at how good she looked for a baby who'd just had brain surgery!
We stayed in the hospital three more days for monitoring, and Madelyn was amazingly improved -- we heard stridor only very occasionally, and she was more awake and alert than she'd ever been. A follow-up swallow study showed that she was no longer aspirating her food, and the doctors felt completely safe sending her home with us.
Unfortunately, since we've had her home we've heard the stridor coming back a little bit, and we're a little worried. We have been told it could be from surgical swelling and we should just keep an eye on her...but last night I was so stressed out, I felt short of breath. It is a crushing load, knowing that if I miss the early symptoms of a shunt malfunction or of brainstem compression, Madelyn could be permanently harmed. Or worse. In early stages the symptoms are so subtle. Lethargy, irritability -- how much sleep is too much? How much crying is too much? And the stridor is hard to quantify because it comes and goes.
Somehow I'm going to have to find a way to mother this child and keep her safe without all the joy going out of it. And my return to work is only two weeks away. Please send us prayers if you can.
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.
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.
Subscribe to:
Comments (Atom)