Day 120
This is all the equipment keeping our peanut alive and well.
The vent came out today - she was breathing on her own with it in so they just pulled it.
The organization Heartbeats for Down's Syndrome came by with about (I'm guessing) $250 worth of stuff for us and her. If you want to donate to a cause that gives 100% of its profit to families whose kids with Down's Syndrome who are having heart surgery - I'd highly recommend them. The restaurants in the area are pretty expensive so the gift cards are great and so highly appreciated. Thank God parking is only $10 a day here.
She also took her first food by mouth - 1oz of pedialyte. She chowed it down and wanted more but we have to go slow. She was MAD she couldn't have more. We fed her more later.
So we had our neuro consult with a resident but will have the full thing with an attending tomorrow. Basically, what it boils down to is this. Your brain is either brain or fluid. She has some fluid where there should be brain. So she lost some brain matter in utero. It's VERY little loss. But it's loss - there is no way to get it back. There will always be fluid where there should've been brain matter. It's called ex vacuo dilation. It should not cause any further issues and it is not blood. It's not hydrocephalus. Her ventricles are slightly larger than normal but it is not ventriculomegaly. In addition, her corpus callosum is slightly thin. It's the part that connects the hemispheres of the brain. It's thinner than normal but is still there. What does this all mean? No idea. We will talk to the attending tomorrow about more information but it sounds like it really should not affect her much, since she already has Down's Syndrome. She may have delays but she probably would've had them anyways. I will ask the attending tomorrow about if it is in a specific part of the brain - like - will if affect speech? Walking? But I think the answer is going to be they don't know given that she already was probably going to be delayed due to DS. So... there's that. I will try to connect with some moms who have kids with DS and this to see what can potentially be expected.
If I were you - I would not google any of the above things - they will only make you worry. She is going to be fine.
The vent came out today - she was breathing on her own with it in so they just pulled it.
The organization Heartbeats for Down's Syndrome came by with about (I'm guessing) $250 worth of stuff for us and her. If you want to donate to a cause that gives 100% of its profit to families whose kids with Down's Syndrome who are having heart surgery - I'd highly recommend them. The restaurants in the area are pretty expensive so the gift cards are great and so highly appreciated. Thank God parking is only $10 a day here.
She also took her first food by mouth - 1oz of pedialyte. She chowed it down and wanted more but we have to go slow. She was MAD she couldn't have more. We fed her more later.
So we had our neuro consult with a resident but will have the full thing with an attending tomorrow. Basically, what it boils down to is this. Your brain is either brain or fluid. She has some fluid where there should be brain. So she lost some brain matter in utero. It's VERY little loss. But it's loss - there is no way to get it back. There will always be fluid where there should've been brain matter. It's called ex vacuo dilation. It should not cause any further issues and it is not blood. It's not hydrocephalus. Her ventricles are slightly larger than normal but it is not ventriculomegaly. In addition, her corpus callosum is slightly thin. It's the part that connects the hemispheres of the brain. It's thinner than normal but is still there. What does this all mean? No idea. We will talk to the attending tomorrow about more information but it sounds like it really should not affect her much, since she already has Down's Syndrome. She may have delays but she probably would've had them anyways. I will ask the attending tomorrow about if it is in a specific part of the brain - like - will if affect speech? Walking? But I think the answer is going to be they don't know given that she already was probably going to be delayed due to DS. So... there's that. I will try to connect with some moms who have kids with DS and this to see what can potentially be expected.
If I were you - I would not google any of the above things - they will only make you worry. She is going to be fine.
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