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Discussion Starter · #1 ·
hi im new to this forum my DD miki is 14 months old still has some issues to over come she has major issues with her digestive system such as GORD, DGE and bowel dismotility aswel hypertonia, laryngomalcia, developement delays and is majorly FTT she is as i said 14 months old and weiging in at 14 pounds 4 ounces and is 100 percent tube fed on a continuos feed through her NG tube she has had a fundoplication and is still not toeratig bolus tube feeds and is even having trouble with continuos feeds as her tummy doesnt empty verry well at all so she is getting a gastrsotomy with a jejunal tube fitted at the start of june hopefully that will help her grow with out beig in pain<br><br>
she was also born with pyloric stenosis wich was corected at 4 weeks of age and servere laryngomalacia which has been operated on twice, she also has an heart murma and tend to be tachicardic after surgeries and when she has her bad pain episodes<br><br>
Just thought i would intoduce us and she if there are any simalar bubs here
 

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My youngest has some similar problems. He has laryng/trach/and broncheal malacia He has a trach and is on a vent. He has GERD as well as my oldest son. They both have DGE also. Both are delayed.. with my youngest being significantly delayed and also FTT He was about 13.5# at 14 months old. He is now 2 years and 20#. He has a gtube and is 100% tube fed. He also has a nissen.. Hes had 13 surgeries for various things..<br><br>
Is he your only son? Is he on a lot of meds?<br><br>
Both of mine were preemies. My oldest was 29 weeks and youngest 27 weeks..
 

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Discussion Starter · #3 ·
wow you must be a busy lady with all that going on, i feel really silly now posting on here is this forum only for serverly prem bubs, sorry if it is<br><br>
Mikis is my only daughter and i have no other children thankgoodness i think it would be hard if i had others aswell<br><br>
She is on meds she is on omeprazole, zantac, dompradone, gastrogel, lactoloose, coloxyl, supostiries and has enemas about once a week<br><br>
How does your son go with feeds having DGE is he on continuos or bolus feeds, miki isnt tolerating feeds well at all no matter what we try we are praying that the Jejelum feeds do the trick,<br><br>
Has your son had his traci pretty much since birth, that must be really hard has he been hom,e from hospital for a while or only short home stays
 

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Dont feel silly for posting it! She (sorry I read it wrong earlier) has some significant problems in my book! And I doubt anybody would try to push you away and say she was not an early enough preemie. Some of the younger gestation ones (like my 29 weeker) have very few problems.<br><br>
My youngest gets milk of mag and enemas quite often.. but he has some other issues down there too... I dont like using suppositories <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> His feeds are every 4 hours and they run over a pump for 1 hour.. But at night time when I do not have nurses I put him on continuous feeds.. Its just too much for me without a nurse to get up every few hours to start and then stop the pump and do breathing treatments.<br><br>
My boy did not get his trach until he was 12.5 months old and that was because he was severely FTT. They had debated the issue for a while and then decided that it was time.. They *thought* it was his feeding issues and gave him a feeding tube but turns out it was not the feeding issues causing the FTT it was the breathing ones.. He was released with the trach and vent close to 17 months old (October) and hospitalized for 2 short stays One right after he was discharged and then one in March... but since then this is the longest he has been home from the hospital.. Im not really counting that March stay <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"> Before the trach and vent he was constantly in the hospital.. Out for a week maybe 2 max and then back in.. He spent more of his life in the hospital than out. He is 24 months old and I still think he has spent more time in than out. But he is catching up to it now <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br><br>
His feeding tube started out as a peg and then he got a mickey right before he was discharged with the trach and stuff... He got the button when he was 6 months old.
 

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Discussion Starter · #5 ·
poor baby he has been throught so much i truely dont know how you manage im glad that you have burses at home otherwise it would be imposible for you, you must be such a great mum,
 
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