kinda lost on this one

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Urgh82
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Posted: Tue Jun 15, 2010 9:33 am 
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they havent been able to connect his forgetting to breath with anything yet Sad fil is home on tommo night... hopefully have some better answers by the weekend cause right now i truly feel lost Sad cant help thinking this is my fault, i never cooked him right.
Amandaplus2
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Posted: Tue Jun 15, 2010 12:45 pm 
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Oh hun dont be silly its not your fault. Sounds like they are doing everything they can to try and find out what the problem is. He is so lucky to have you as a Mummy. (((((Hugs))))) xxx
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Urgh82
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Posted: Tue Jun 15, 2010 3:53 pm 
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we had a wee sit down mini meet with the consultants and his nurse!

ALL his results are coming back negative. Every syndrome they tested for so far have been negative. His heart scan was perfect, his tummy is perfect, so is his hearing.

he had an infection of sorts and its now gone, he does have slightly larger pools of fluid on his brain and they are NOT worried over that in the slightest.

they still have a few chromo results to come back but are fairly sure they will be negative. his features have been changing and they are now saying they think his features are plainly down to a mix of our genetics rather than a syndrome!!!!!!!!!!!!! Very Happy

the only thing concerning them is his lapses in breathing at night. where he forgets to breath for a few seconds over a period of an hour. they are giving him another day or 2 to see if he grows out of it still. if not they will start investigating why it keeps happening. till that stops happening he will stay in special care Smile

bonuses is, as of tonight he will be OUT HIS TANK! i am able to put a wee baby grow on him, feed him my self, change him my self and pick him up at my leisure Very Happy !!!! Wooooooo hooooooooo.. oh oh oh and tommo some point i'l be allowed to bath him Very Happy !! wash his lush hair!!

still will have to attend clinic as an outpatient, things MAY show them selves as he gets older, but till then, there happy he is just a perfectly bouncing, happy wee fella Smile such positive news and im delighted! my baby may well be home with us very soon x
EmmAJanExx
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Posted: Tue Jun 15, 2010 4:07 pm 
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hi laura just been reading through your post and im so sorry your goign through al of this . it mirrors my time with jamie in the neo nate..as they didnt know what was wrong and had a series of test including the lumber puncture and mri and brain scans and hear lungs and spleen . stuff..... but my boy is absolutley fine now Smile ..i know its hard to tthink that far ahead . right now ..but u have us all to support you .. another reason im posting is .. reading through the tests that they have done and found nothign .. but u mention he is having symptoms of a 30 week gestation baby!! his head and features being differrnt sizes and breathing forgetting.... cuold there be any chance that they got your gestation wrong!!! and he really is thatof a 30 week old baby .. not 36 and is just long and massive !!

just a stab in dark btw lol
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Urgh82
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Posted: Tue Jun 15, 2010 4:10 pm 
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i asked if my dates coulda been wrong.. but the came back to same conclusion, from the 6+1 scan to the 26 week scan he was bang on sizes for my dates. twasnt till the fluid problem happened he started getting bigger than average Confused
EmmAJanExx
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Posted: Tue Jun 15, 2010 4:25 pm 
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mm they will say that . cos they say .. scan are acuurate.. but they told me amelie was the size of 5lb baby and her lenght was tiny she was way below average ont he scales!! but she was 10lb 7 and a very very long baby x
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Urgh82
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Posted: Tue Jun 15, 2010 4:41 pm 
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tbh, they truly are numpties!! been nothing but bother with them Sad mind u to be fair, they estimated ben was 8lb-ish to date, and born he was 7lb 14oz so they werent too far off Smile

i dunno how u coped carrying that weight Shocked i know i lost 4+liters of water alone but it cant be that heavy surely lol!!
EmmAJanExx
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Posted: Tue Jun 15, 2010 4:44 pm 
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lol i had tons of water 2!! it went for over 2 hours and still i had water when she was born lol xxx hope u getting lots of cuddls now x
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MiniMeg
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Posted: Tue Jun 15, 2010 8:49 pm 
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glad things r looking more positive 4 u all - wot a rollercoaster uv been on Shocked sendin lots of luv and cuddles x
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simmysim
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Posted: Tue Jun 15, 2010 9:05 pm 
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oh wow that is fantastic news Very Happy Very Happy you must be ecstatic!!!
i am soo pleased for you!!!
i hope he grows out of his breathing problems - could it be like a sleep apnia (sp)?
xXx
Urgh82
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Posted: Wed Jun 16, 2010 4:08 am 
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well, thing with the sleep apnea is, they said they would have expected him to have grew out of that by now?
mainly because every test they have done that they would expect to have the apnea as a side effect so to speak, like bleeding in the brain or an infection, respiratory disease, gastrointestinal problems (like reflux), calcium or glucose imbalances and problems with his heart or blood vessels are all negative. he truly is baffling them with this. ?????????/

hopefully see a lung specialist soon if it dont sort its self out in the next day or 2, start investigating further. BUT because they already did an EKG they are reluctant, cause the pulmonologist(sp) uses that to test for the apnea and its been done and he was perfect results!!!!!
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Posted: Wed Jun 16, 2010 7:16 pm 
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Ahhh, i am so pleased for you! Have been following this post and your birth story. SO glad he is doing ok, and how exciting, you get to hold him and feed him and bath him for the first time! You must be sooo excited!

Hope the breathing thing resolves quickly and you can bring your gorgeous bouncing baby boy home soon,

Mandy xx
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Urgh82
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Posted: Sat Jun 19, 2010 4:41 am 
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why do tests have to take so long to come back!!!

all his chromo counts so far are still coming back negative, althou they are still waiting on the full count just to make sure there isnt one thats decided to attach to another or something like that ??

the geneticist has been in to see ben and is almost sure he has a specific syndrome Sad they took some bloods etc and are off to have a look at his bits under the micro. they said i shouldnt worry right this min as its just the features he has in common with it, none of the heart defects or the enlarged head etc... and it wont explain why he keeps forgetting to breath Sad !!

im now more lost than i ever was. trying to keep positive and keep seeing positives is gettin harder some days. im back on the happy pills and its really sad that i can not wait till they kick in so i can go numb and dont feel!

my bodys falling to bits, i have a womb infection too. i havent had any recovery time and im emotionally and physically exhausted!! i have no clue how to divide my time. we was trying the 1 go in morning, he goes in afternoon and i go in evening, as bad as it sounds i couldnt keep doing that, iv been finding coping with alasdairs moods and tempers a wee bit harder.

urrgghhh sorry for the moan.
mumsamrice
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Posted: Mon Jun 21, 2010 2:29 pm 
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Awla... hun, I am just reading through your posts. You are doing so so well and so is little Ben. I am thinking of you and wish you all the best. My friends girl had just had all clear after 3 years of waiting. They were sure she had features of syndrome.. and now they said it is just pure coincidence. Hope it is the same for baby Ben. lots of love... xxxx
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LauraG
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Posted: Mon Jun 21, 2010 6:18 pm 
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gosh i didnt realise ur baby was still in hosp.

georgia has had a lot of problems nothing major but always in and out of hosp and never any proper answers.

were still waiting for an explanation to y she isnt devloping at the rate she shud be.

seems doctors dont understand these are our babies and the not knowing is awful.

sounds like georgias tests results all coming bak normal but still having certain problems.

im sure he will ok and hoping hel be home with u soon.
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