Joyful relief!!
Mar. 9th, 2009 04:37 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
rivkaSome phrases have very, very few contexts in which you'd ever want to use them. "My kid's neurosurgeon" is one of them. Nonetheless, I am delighted to report that we saw Colin's neurosurgeon this afternoon, and he thinks Colin is normal.
I know, I know, you didn't know anything about this. And for good reason - it's been a really scary process and a really nebulous one, which is a bad combination, and early on we made the decision not to spread the anxiety around. We've only told a couple of family members who have medical training. But now, hey, everyone can share in our joyful relief.
Six weeks ago I had my 38-week midwife visit, the one where Colin had turned breech. They sent me to the hospital for a confirmatory ultrasound. That ultrasound tech noticed abnormal levels of cerebrospinal fluid (CSF) in two places in Colin's brain: the cisterna magna, which is at the back of the skull, and the third ventricle. The OB brought down to counsel me couldn't tell me much; the clinical syndromes associated with those abnormalities usually involved abnormalities in other parts of the brain as well, and the other parts of Colin's brain looked totally fine. He said we should wait and see.
Michael and I both spent some terrified time wondering if Colin would be severely brain-damaged. One of the terms on the table was Dandy-Walker syndrome, which you shouldn't Google unless you want to be as freaked out as we were. One of my dissertation subjects had Dandy-Walker, and... yikes. But if that were the case, Colin should've been missing a piece of his cerebellum, and he wasn't.
We talked to my sister the pediatrician, and then to Alex's pediatrician. Both of them helped rein in our flights of terrified speculation, and let us know that the worst-case scenario we were looking at was hydrocephalus. Which, you know, still potentially very bad. Best-case scenario: his brain looked funny on prenatal ultrasound because of positioning or something, and the abnormalities wouldn't be present on a neonatal scan.
We waited.
When Colin was born, he had a head ultrasound while he was still in the hospital. The ultrasound showed no signs of an enlarged third ventricle or any other ventricle, which pretty much ruled out hydrocephalus, but there was still an abnormal buildup of CSF at the back of the brain. "Differential diagnosis includes mega cisterna magna, arachnoid cyst, or Dandy-Walker variant," which is apparently not the same thing as Dandy-Walker syndrome. They recommended an MRI at two months. We took the report to our pediatrician, who referred us to a neurosurgeon at Johns Hopkins.
We waited.
Colin seemed so normal. He nursed well, which shows coordination of a pretty complicated physical task. He had good muscle tone, good head control for his age. He seemed very alert. He started to focus his eyes on things and produce vocalizations. We were encouraged, but also aware that we might be grasping at straws.
We waited.
Today was the neurosurgery appointment. They felt Colin's head, measured it, asked us some questions, studied the ultrasound report, and assured us that we were most likely looking at mega cisterna magna or arachnoid cyst, both of which are essentially normal variants which carry no developmental consequences. They feel that Dandy-Walker anything would be accompanied by hydrocephalus, which Colin doesn't have. They don't feel that the likelihood of serious problems justifies exposing Colin to the risks of MRI (sedation) or CT (radiation), so we're just going to have a repeat ultrasound in another three months.
Through all of this, Michael and I have kept reminding each other that we will be the parents Colin needs. If he were developmentally disabled? We'd be the parents he needed. If he needed brain surgery as a tiny infant? We'd be the parents he needed. Our son is our son, and we are his parents.
So now we can be the parents he needs when he doesn't want to have his hair washed, when he gets the stomach flu, when he's afraid of the dark, when he's roughhousing on the playground and breaks his arm, when he doesn't get invited to someone's birthday party. We'll be the parents he needs through all of that too.
Thanks be to God.
I know, I know, you didn't know anything about this. And for good reason - it's been a really scary process and a really nebulous one, which is a bad combination, and early on we made the decision not to spread the anxiety around. We've only told a couple of family members who have medical training. But now, hey, everyone can share in our joyful relief.
Six weeks ago I had my 38-week midwife visit, the one where Colin had turned breech. They sent me to the hospital for a confirmatory ultrasound. That ultrasound tech noticed abnormal levels of cerebrospinal fluid (CSF) in two places in Colin's brain: the cisterna magna, which is at the back of the skull, and the third ventricle. The OB brought down to counsel me couldn't tell me much; the clinical syndromes associated with those abnormalities usually involved abnormalities in other parts of the brain as well, and the other parts of Colin's brain looked totally fine. He said we should wait and see.
Michael and I both spent some terrified time wondering if Colin would be severely brain-damaged. One of the terms on the table was Dandy-Walker syndrome, which you shouldn't Google unless you want to be as freaked out as we were. One of my dissertation subjects had Dandy-Walker, and... yikes. But if that were the case, Colin should've been missing a piece of his cerebellum, and he wasn't.
We talked to my sister the pediatrician, and then to Alex's pediatrician. Both of them helped rein in our flights of terrified speculation, and let us know that the worst-case scenario we were looking at was hydrocephalus. Which, you know, still potentially very bad. Best-case scenario: his brain looked funny on prenatal ultrasound because of positioning or something, and the abnormalities wouldn't be present on a neonatal scan.
We waited.
When Colin was born, he had a head ultrasound while he was still in the hospital. The ultrasound showed no signs of an enlarged third ventricle or any other ventricle, which pretty much ruled out hydrocephalus, but there was still an abnormal buildup of CSF at the back of the brain. "Differential diagnosis includes mega cisterna magna, arachnoid cyst, or Dandy-Walker variant," which is apparently not the same thing as Dandy-Walker syndrome. They recommended an MRI at two months. We took the report to our pediatrician, who referred us to a neurosurgeon at Johns Hopkins.
We waited.
Colin seemed so normal. He nursed well, which shows coordination of a pretty complicated physical task. He had good muscle tone, good head control for his age. He seemed very alert. He started to focus his eyes on things and produce vocalizations. We were encouraged, but also aware that we might be grasping at straws.
We waited.
Today was the neurosurgery appointment. They felt Colin's head, measured it, asked us some questions, studied the ultrasound report, and assured us that we were most likely looking at mega cisterna magna or arachnoid cyst, both of which are essentially normal variants which carry no developmental consequences. They feel that Dandy-Walker anything would be accompanied by hydrocephalus, which Colin doesn't have. They don't feel that the likelihood of serious problems justifies exposing Colin to the risks of MRI (sedation) or CT (radiation), so we're just going to have a repeat ultrasound in another three months.
Through all of this, Michael and I have kept reminding each other that we will be the parents Colin needs. If he were developmentally disabled? We'd be the parents he needed. If he needed brain surgery as a tiny infant? We'd be the parents he needed. Our son is our son, and we are his parents.
So now we can be the parents he needs when he doesn't want to have his hair washed, when he gets the stomach flu, when he's afraid of the dark, when he's roughhousing on the playground and breaks his arm, when he doesn't get invited to someone's birthday party. We'll be the parents he needs through all of that too.
Thanks be to God.
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no subject
Date: 2009-03-09 08:43 pm (UTC)no subject
Date: 2009-03-09 08:44 pm (UTC)no subject
Date: 2009-03-09 08:45 pm (UTC)no subject
Date: 2009-03-09 08:51 pm (UTC)P.
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Date: 2009-03-09 09:04 pm (UTC)Go Niblet! :)
N.
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Date: 2009-03-09 09:04 pm (UTC)no subject
Date: 2009-03-10 12:15 am (UTC)no subject
Date: 2009-03-09 09:04 pm (UTC)no subject
Date: 2009-03-09 09:07 pm (UTC)no subject
Date: 2009-03-09 09:07 pm (UTC)no subject
Date: 2009-03-09 09:21 pm (UTC)Colin is lucky in his parents (and his big sister, too).
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Date: 2009-03-09 09:26 pm (UTC)no subject
Date: 2009-03-09 09:26 pm (UTC)I share your joyful relief and the very welcome news today's appointment brought. Huzzah!
Colin news
Date: 2009-03-09 09:27 pm (UTC)Chaz Baden
CDA (Southwest)
no subject
Date: 2009-03-09 09:28 pm (UTC)I am glad that this turned into a good outcome. Really glad for all of you.
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Date: 2009-03-09 09:31 pm (UTC)no subject
Date: 2009-03-09 09:38 pm (UTC)no subject
Date: 2009-03-09 09:48 pm (UTC)no subject
Date: 2009-03-09 09:50 pm (UTC)no subject
Date: 2009-03-09 09:51 pm (UTC)no subject
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Date: 2009-03-09 10:40 pm (UTC)no subject
Date: 2009-03-09 10:56 pm (UTC)no subject
Date: 2009-03-09 11:47 pm (UTC)You decide you're either going to do it, or die trying -- if there's a way to do it, you'll do your best to find it, and you'll keep looking as long as you can.
I'll take "grace", although it might be a little too flattering. "Composure" might describe my state of mind a little better. :)
no subject
Date: 2009-03-09 10:29 pm (UTC)no subject
Date: 2009-03-09 10:41 pm (UTC)I'm so glad he's ok. And you're ok. I'm sorry for talking about cranial osteopathy.
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Date: 2009-03-09 10:42 pm (UTC)no subject
Date: 2009-03-09 10:48 pm (UTC)no subject
Date: 2009-03-09 10:54 pm (UTC)no subject
Date: 2009-03-09 10:56 pm (UTC)Now you can go back to being the parents Colin needs.
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Date: 2009-03-09 11:40 pm (UTC)I'm so happy that it turned out to be nothing much (as fears often do) and that Colin is the happy, healthy baby we all hoped for (especially you, Michael, and Alex)!
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Date: 2009-03-10 12:31 am (UTC)I'm so glad things are turning out OK. How absolutely terrifying.
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Date: 2009-03-10 02:34 am (UTC)no subject
Date: 2009-03-10 03:10 am (UTC)no subject
Date: 2009-03-10 03:43 am (UTC)no subject
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Date: 2009-03-10 05:44 am (UTC)no subject
Date: 2009-03-10 07:06 pm (UTC)no subject
Date: 2009-03-10 07:49 pm (UTC)Hugs!
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Date: 2009-03-12 10:57 pm (UTC)Thanks be to God indeed!