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Okay, well last week the doctors were supposed to do some brain scans, but all they could tell was that there was fluid in Mallory’s brain, and it wasn’t draining on their own. Then not too long ago, they discovered that there is bleeding in her brain, and she has been flown to Iowa City’s hospital ( 2 hours away by car) via helicopter, and I haven’t heard much besides that. Lance and Carol have packed their bags and are going to stay there for a few days. I am assuming that they are going to drain the fluid and blood. I wish I knew more, but I always here this information from my husband from Lance, and my husband isn’t one to get too many details, so I am usually stuck with the basics until I talk to Lance myself. Lance told me that he originally got the information wrong about how much brain damage Mallory might have. I guess there is a possibility, but there is a good chance it will not be too terribly significant, but now with this blood in her brain, I don’t know if that will change anything. This is really scary for all of us, but surprisingly I am being optimistic because of all of the good stories I have heard of premature babies being healthy and happy. Prayers are needed for everybody!!
I think they took her to one of the best hospitals I have ever heard of. My grandmother went there every 3 months for years. They were always good to her. 😀
I’ll pray for her. 🙂WindstoneCollector wrote:I think they took her to one of the best hospitals I have ever heard of. My grandmother went there every 3 months for years. They were always good to her. 😀
I’ll pray for her. 🙂Really? I have never been there myself, but knowing that is very comforting! I still am nervous, but being optomistic!
You need this right now so I’m making the time to give you what I hope is some faith in what’s to come…Oh and I’m going to try and keep rants out of this, but I have more than a few.
I don’t remember when you actually joined the forums, but when my Khym was born, he’d had a stroke during L&D, I know that there’s a big difference in the fact that he was born full term (40wks 5Days) but this is a rather common and very surmountable problem that occurs in Preemie’s/low birth-weights. We were told that it’s so stupidly common in pre-termer’s that because Khym was full term it was actually far more of a worry. Here’s the “Dumbed down” version they had to give my male so that he could start to follow when this nightmare was happening(and what I simplified even more for him).
1) stroke happened
2) stroke is basically a Hemorrhage (bleeding) into the brain.
3) the blood pooled in the brain’s natural cavities (spaces)
4) Blood filling these spaces causes brain pressure(think “Balloon” inside small box being filled)
5) Pressure in brain causes seizures *this is what we had been seeing*
6) The Stroke, pressure, and seizures could all cause brain damage.
7) they don’t know what caused a healthy full term baby, who shouldn’t have had a stroke to have had one *I have my theories*Ok so after a terrifying time, remember in little one’s this is perfectly normal- but not in full term healthy big but not too big babies it’s not, we were finally able to bring our Little Heart home on anti-seizure meds. The one actual potential side-effect of the blood in the cavities is that as it’s being reabsorbed(going away) it will do what blood does and clot/clog up the brains natural drainage tubes. And umm yeah 1 Friday we were released the next we saw his Pedi, and the following we were right back in the hospital because of this. The seizure meds were working , which was both good and bad, because he didn’t have a seizure which would have been a nearlier warning sign than “Sunset eyes” where the pressure builds up so much it literally forces/pushes the eyeballs in their sockets down. Yeah and we thought the seizures were scary.
😯 so then they had to rush the Neuro-Surgeon up from another city, since they had both gone there for different reasons, and we needed one immediately. The neuro-surgeon installed a VP shunt, which is basically an artificial brain drain tube (sorry I had to 😈 ).Yes we had been thinking “Why didn’t they just put one in in the first place” well reason is that in the first 3 months the chance of it becoming seriously infected (or working it’s way back out of the skin) and it’ very slight chance of ever being removed, as well as the constant probability of it’s clogging up, and then the guarantee of it having to be replaced in the future, oh and did I mention the chance of infection? makes it something that if “You absolutely positively do not need” you should not have thing, is why. The “Stroke”/Blood often vacates the brain fine on it’s own, however Khym’s not in the normal category.
We have seriously lucked out by not having the actually complications with the shunt. However that’s one of if not the main reason I’ve been ghosting here instead of anything else, he’s been scaring the bejeebers outta us by doing what looks like “Shunt Failure”, but is now looking more and more like it’s merely a different form/type of seizures than we knew. And until that’s cleared up and I can get something more akin to sleep than I have, I’ll be returning to the ethereal state.
I hope this stupidly long post helps you some.
Lupin wrote:You need this right now so I’m making the time to give you what I hope is some faith in what’s to come…Oh and I’m going to try and keep rants out of this, but I have more than a few.
I don’t remember when you actually joined the forums, but when my Khym was born, he’d had a stroke during L&D, I know that there’s a big difference in the fact that he was born full term (40wks 5Days) but this is a rather common and very surmountable problem that occurs in Preemie’s/low birth-weights. We were told that it’s so stupidly common in pre-termer’s that because Khym was full term it was actually far more of a worry. Here’s the “Dumbed down” version they had to give my male so that he could start to follow when this nightmare was happening(and what I simplified even more for him).
1) stroke happened
2) stroke is basically a Hemorrhage (bleeding) into the brain.
3) the blood pooled in the brain’s natural cavities (spaces)
4) Blood filling these spaces causes brain pressure(think “Balloon” inside small box being filled)
5) Pressure in brain causes seizures *this is what we had been seeing*
6) The Stroke, pressure, and seizures could all cause brain damage.
7) they don’t know what caused a healthy full term baby, who shouldn’t have had a stroke to have had one *I have my theories*Ok so after a terrifying time, remember in little one’s this is perfectly normal- but not in full term healthy big but not too big babies it’s not, we were finally able to bring our Little Heart home on anti-seizure meds. The one actual potential side-effect of the blood in the cavities is that as it’s being reabsorbed(going away) it will do what blood does and clot/clog up the brains natural drainage tubes. And umm yeah 1 Friday we were released the next we saw his Pedi, and the following we were right back in the hospital because of this. The seizure meds were working , which was both good and bad, because he didn’t have a seizure which would have been a nearlier warning sign than “Sunset eyes” where the pressure builds up so much it literally forces/pushes the eyeballs in their sockets down. Yeah and we thought the seizures were scary.
😯 so then they had to rush the Neuro-Surgeon up from another city, since they had both gone there for different reasons, and we needed one immediately. The neuro-surgeon installed a VP shunt, which is basically an artificial brain drain tube (sorry I had to 😈 ).Yes we had been thinking “Why didn’t they just put one in in the first place” well reason is that in the first 3 months the chance of it becoming seriously infected (or working it’s way back out of the skin) and it’ very slight chance of ever being removed, as well as the constant probability of it’s clogging up, and then the guarantee of it having to be replaced in the future, oh and did I mention the chance of infection? makes it something that if “You absolutely positively do not need” you should not have thing, is why. The “Stroke”/Blood often vacates the brain fine on it’s own, however Khym’s not in the normal category.
We have seriously lucked out by not having the actually complications with the shunt. However that’s one of if not the main reason I’ve been ghosting here instead of anything else, he’s been scaring the bejeebers outta us by doing what looks like “Shunt Failure”, but is now looking more and more like it’s merely a different form/type of seizures than we knew. And until that’s cleared up and I can get something more akin to sleep than I have, I’ll be returning to the ethereal state.
I hope this stupidly long post helps you some.
Wow, I didn’t know that bleeding in the brain was common for preemies. Is Khym still getting seizures? That did give me some hope because even though some hard things might happen, Mallory probably still has a good chance to pull through! Thank you!
They put what’s called a shunt in her brain to drain the fluids. They have to continually drain fluids as it occurs. The doctors told Lance that if fluids continue to accumulate in her brain, then she will probably continue to have a shunt in her brain for the rest of her life. I hope that’s not the case! 🙁 She is expected to stay at the Iowa City hospital for 2 months. From what I know-Carol will stay at the Ronald McDonald house for quite sometime, while Lance will work in Des Moines during the week, then drive two hours every weekend to be there with Carol.
eaglefeather831 wrote:WindstoneCollector wrote:I think they took her to one of the best hospitals I have ever heard of. My grandmother went there every 3 months for years. They were always good to her. 😀
I’ll pray for her. 🙂Really? I have never been there myself, but knowing that is very comforting! I still am nervous, but being optomistic!
Yes, I do believe in what I said. My mother also works for an area hospital, and if they require life-flights or transfers 95% of the patients go all the way to Iowa City. Peoria and a few other major medical facilities dealing with brain heart and lung work along with many other areas, are much closer. I do believe I would want to be there if anything happened like this to my child or myself. *nods*
I will keep her in my prayers, and stop by to check on your updates.
Here are two pics of Carol holding Mallory. I originally had three pictures, but I accidentally deleted that one. I had to kick myself in the head because it was the best one and it showed Mallory’s face. I can get it again, so when I do, I’ll post that one.
Good news though! The doctors have to drain fluids from her brain everyday, but they have been draining less fluid lately, which indicates that fluid isn’t building up as much as it used to, so the docs say it is possible for her to not have a shunt in her brain! Also, the doctor said he was surprised as to how well she is recovering, and she is doing better than he thought.
These pictures are when Mallory just started getting fluid drained from her brain (hence the cottonball on the top of her head) so her head is really swollen in these pics. I just saw her a few days ago, and she isn’t as red, and her head is smaller.
I also got to change Mallory’s diaper when I was in Iowa City! I thought I would break her skinny legs, but the nurse reassured me that she is stronger than she looks.
No kicking yourself! 😀 I’m sooooo happy that Mallory is doing better! That’s such a big relief 😀 *hugs for all!*
twindragonsmum 😀
tdm
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