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Name: Emma_Calvesbert
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Hi my names Emma ive had 4 premmies each one has gotten earlier my last little boy was a 26 weeker born last aug he's nearly one now,but it was one hell of a bumpy ride its like rollercoaster always up and down n it still is if i honest! the next few months are goning to tear your life apart and just wen you think your getting somewhere it'll start all over again. Tj was only 2lb wen he was born adn for the first 3 days he done well he was on minamil vent help but then i wnet to bed on the mon nit(he was born on the sat)and wen i went to visit him on the tues1st thing i must add this was the first nite i had slept through normally id go up 2 times with my ebm and the only way to discribe him is that he looked dead,im crying wen im writing this as its like reliving it all ova but im hoping that helping you will bring me to get ova it. he'd suffered a massive bleed in the night 1st in his right lungs then in his brain,my 3rd son had had a bleed in his brain so i understood bit bout it however his was minamil and neva effected him in anyway,wen i asked the doctor who is now a very close friend which grade of bleed it was he said grade 4 which is the worst you can get then he added if their was a five he'd be in it he also added that this was one of the worst cases he's seen in a very long time and for him to say that well it really mad me relise how sick my little boy really was. ova next few weeks tj couldnt do anythin he jus got sucker n sicker one of the compilacations of a bleed is for the blood to block the passage ways in the head and make the head swell with fluid and tj got it within jus a few days of the bleed his head swelled to a huge size and i was told that if and wen his big enough and strong enough he would need an opporation to fit a perminant shunt in his brain to drain the fluid to his tummy but he was only 2lb and he needed to 4ib 6oz b4 th4 alder hey would even consider doin ti. that felt like a million miles away at the time. but in mean time the fluid get buildin up n up n upto the point where they said they had to tap his head to relive the pressure but its an invasive thing cos their putting a needle through the brain tissue so tteirs a chance of damage but with hte severe bleed we'd already been told their was a chance he's neva come off the vent n if he did that he's neva walk or talk so we had nothing to lose really the doctors were hopoing not to have to tap him so soon bcos once they start doin it it needs done every other day but tj ended up on daily ones u new wen he needed it cos his sats wood drop his o2 wood b up at 100% n he'd b having bradys all time. but their was more to come he ended up getting NEc which is a bowel problem and that made him very very sick and his tummy wnet black,he got ecoli and really nearly died we had him christned that time cos they were having to tap his head and siad they didnt think he'd make it through the procedure.( i was so scared) then their was the fingers he had a canular put inhis hand but they tried bout7-8 times and in end his hand wen black and they feared it would fall off but he ended up losing jus 1 finger but it was his right hand and index finger. then their was the liver problem he had hypobillirubinanemia and was on daily injection for 8 months cos hisliver couldnt work properly due to being so imature. he had his shunt fitted in nov wen he was 3 months old at which point he was on cpap but still kept ending up back on vent every now and then for a rest. i was told he'd wake straight up after opp but he neva infact he was under the general for 5 days bcos this liver couldnt get rid of it quick enough due the disese. that was scary. then he finally managed to come home the week b4 christmas i must add that he's spent more time back in then he has at home he has cronic lung disese so the slightset cough or cold knocks him for sick the longest we've had him home is 22 days to date, his shunt also got infected back in march and he had to have a new one ffitted which we spant month in alder hey for. oh then their was the pnemonia he got in april where he ended up back on a vent for 10 days,our local hospital in blackpool doesnt do vent children or babys you have to go to alde hey or manchester so off we we went for easter to liverpool its like our second home these days and from a develpment point of view he's only 14lb and is still in 0-3 month clothes and the ecoli that he had had to b treated with gentamicin antiboitics and bcos of that he's profoundly deaf in both ears he had aids but their unsure of wot he can understand bcos the brain damage. he cant sit roll or even lift his head off the floor yet.... we see specialist every 2 weeks and he has psysio evert week day bcos his left side he does not use so its goin tight he's like a one sided baby cos he only kicks n moves his right side we've tried to wean him 3-4 times bcos he feeds every other hour st trhe monent cos he needs more than just milk but he has a problem with his throte and is having a clip fitted in his tummy so i can feed him direct into his tummy they've said it might not b for life we jus have to wait n see cos at mo wen you fed him foof he asprastes it into his lungs n ends up on vent cos of infection. infact he only cameout last week cos he was in with a nasty chest infection. they doctors have now said he will neva walk ncos he doesnt have the mussle tone or strenth to support his weight it was very sad last week bcos its al becoming real that we dont have a 'normal' baby wot eva normal is these days. i feel kike its all hit me wot ive been through this last yr. im looking to hear from people who have been where i am and can help me through the time ahead as im unsure of my abilty to cope i no i will cos i have to but i jus feel very alone at the moment anyway thanks for taking the time to read bout me and tj i hope to hear from someone soon emma ;)
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Name: saravitale | Date: Sep 15th, 2006 3:52 PM
my heart goes out to you emma. i know what u are going through to some extent, though my sons problems are much different. I am in need of friends also and would welcome you getting in touch with me

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