kinda lost on this one

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Urgh82
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Posted: Mon Jun 14, 2010 5:50 am 
Post subject: kinda lost on this one
i have no idea as yet what if anything my new wee fella has but the hospital are certain he has "a syndrome" just cant be clear on what one, its not very re assuring that they cant hazard a guess either and when they said they havent seen it b4... he is still in NICU, finally breathing on his own and feeding really well. he is hitting all the markers you would expect a new born to achieve. he was born at 36+2 weeks and weighed 7lb 14oz. i had a condition called Polyhydramnios

the reason they are doing the full chromosome counts is because he has what they called distinguishing features. the high nasal pallet and small slanting eyes and low, small ears. his face is a little bit flatter looking than ur "average" baby. to me he looks like a right wee porker thou hehe!!

they are still to run an MRI and its kinda killing me. how do people cope with the not knowing whats wrong. im a very impatient person at the best of times and this waiting on them gettin results to rule out 1 thing b4 they can do another test to rule out another is killing me.

i want to help my baby, plan for him and i cant. this is what im finding hard.

how did others cope with it, i know the 1 day at a time rule. but thats not helping atm when all i can do is look at him thru a box and hold him once a day.. not being able to feed or change him yet or care for him is hurting Sad
simmysim
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Posted: Mon Jun 14, 2010 6:02 am 
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aww hunny, i am really sorry to hear you are going through this!! i really cant offer any advise, but i know the "not knowing" and all the waitin is hard, my LO had an MRI a few weeks ago, but before then it was just "ruling things out"!

have they not given you any indication as to what they think it "might" be??

you are in my thoughts, and i hope evrything is ok!
he is a big strong boy, and i am sure he will be well enough soon for you too cuddle as much as you like!!
brilliant news that he is breathin on his own! Very Happy
have read ur birth story and had a nosey at ur pics... he is gorgeous !! XXx
Urgh82
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Posted: Mon Jun 14, 2010 6:09 am 
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no indications at all, they cant even guess... the wee fella has them baffled cause all the syndromes he could be showing signs of he is showing zero symptoms of. they dont have a scooby doo Sad !!
simmysim
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Posted: Mon Jun 14, 2010 6:19 am 
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and they do all them years of training for??? lol sorry i know doctors and nurses work hard (im trainig to be a nurse myself) but how can they have no idea - yet still think he has something wrong??
this must be a nightmare for you!! is there any other indication other than "distinguishing features" ?
xXx
Urgh82
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Posted: Mon Jun 14, 2010 6:29 am 
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he has what looks like a "double bubble" tummy (duodenal atresia ). his stomach looks like it is partitioned off slightly. they have still to do the scan which will hopefully be today. but with that means not feeding, weight loss, green sick, no bowl movements, downs syndrome in 30% of cases.... neither of which he is doing and they ruled downs out already Confused
simmysim
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Posted: Mon Jun 14, 2010 6:40 am 
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well i really hope for you that they find out what is wrong (if anything!) you are both in my thoughts and i hope your little man gets well soon!! i will b looking out for your posts to see how you are both doing!! xXx
davesgirl
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Posted: Mon Jun 14, 2010 5:05 pm 
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hope they find out soon what is going on, ur in my thoughts huni x
Urgh82
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Posted: Mon Jun 14, 2010 5:10 pm 
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they done his mri scan. he has some slightly larger pools of fluid on his brain but not so much that they are concerned and his heart is perfect. they have ZERO idea what so ever why he has the features they keep banging on about. other than the chromo count still to come back, iv to go in tonight and authorise some other tests they have yet to talk to me about... kinda scared at that.

he had 2 wee mini episodes of his o2 levels dropping during feeding last night but all in there not worried bout him at all Smile
simmysim
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Posted: Mon Jun 14, 2010 6:45 pm 
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is it the fluid surrounding his brain or in the ventricles? my Lo also has too much fluid in and around his brain.
is there definitly something wrong?? or are they concerned about nothing?? what do you think hunny? do you in you r heart think there is anything wrong??
great news about his heart btw Very Happy xXx
Jennifer256
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Posted: Mon Jun 14, 2010 7:53 pm 
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Aw hun....know exactly how you must be feeling! We were in hospital for just over 2 months with Archie and the doctors did not know what was wrong with him at first either, it took nearly 2 weeks for a confimed diagnosis.
He is home no and his condition is managed on medication.

Archie used to drop his sats in hospital to it turned out to be reflux, so he is still on medicine for that too.

You just have to be strong for your littleone, and have faith in the doctors.

The worst thing I found was not understanding their 'terms' at times, make sure you fully understand everything and ask lots of questions.

I wouldnt hold Archie at first....to scared, but soon became a pro at changing him, washing him etc even with all his csnnula's and lines in!

Hope you get good news soon and that the docs are worrying for nothing xx
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Kenty
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Posted: Mon Jun 14, 2010 9:11 pm 
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awww hun, trust me, i know how frustrating it is not knowing!!

the large pools of fluid sounds similar to what they said about lily-ann(enlarged cerebral fluid spaces) and they've still to give us a diagnosis!

frustrating as it is you have to just hang in there and not to get too hopeful for an answer as it can be such a long frustrating process! Sad
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Urgh82
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Posted: Tue Jun 15, 2010 5:42 am 
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it kinda feels like 1 step in and 3 straight back Sad i havent slept because of damn bloody google last night!!

they ruled out 4 or5 of the major syndromes,names i cant even begin to pronounce!! thats just the preliminary results, hopefully by end of the week, once the FIL has had a word in the head of that departments ear, the realise who's grandson he is, they will speed things up a bit Sad

turns out i miss heard, they never did the MRI, they just scanned the head and heart. also his tummy is perfect, so no need to worry Smile

he has started forgetting to breath again too, which is frustrating!!! they cant find an actuall medical cause why he is doing that. they just keep repeating over and over, its something they'd expect a baby born at 30/32 weeks to do for a few days then it fixes its self, not a baby born at term. there is no logical reason for why he is back to forgetting again Sad

the 1 thing im clinging to is, he is feeding from a bottle perfectly, winding just great, appears to have no reflux bother, follows my voice, settles when i eventually do get to hold him, plenty stinky and wet nappys Smile last night he woke bang on time for his feed, cramming his hand in his mouth and started chomping on it, he has god some grip and some suck lol!!!
simmysim
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Posted: Tue Jun 15, 2010 6:02 am 
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Google can be your worst enemy!!! but also does help when trying to decipher all that medical jargon!!
i wish there was something i could say to make you feel better Sad i know theres not.
Just have faith in the doctors as i am sure they are doing everything they can for your little man, and hopefully a little more when grandad has a word Wink !!
is sounding good that he is feeding well and with the dirty/wet nappies - all has to be good sign!
did you get the results of the chromosome count yet? did that come back ok?
xXx
Urgh82
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Posted: Tue Jun 15, 2010 6:34 am 
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we only got the preliminary results so far. the main ones they were checking for, i shoulda wrote down!! gonna ask again today, anyway... they have ruled out a small chunk of them or what they'd expect him to have. so still counting so to speak, took even more bloods last night. im so glad he still has a cannula in!!
Michelleplus4
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Posted: Tue Jun 15, 2010 9:05 am 
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i cant imagine how hard it is for you being unable to nurse him like you would do at home Sad
hopefully you will get some answers soon
are they associating his stopping breathing with his syndrome or is not not a possibility ? ( sorry not clued up )
im so bad for googling things and when i do its usaully the worst case scenarios im drawn to, still dont stop me though as im sure it aint stopping you looking !
he is a gorgeous wee boy laura x
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