10month old Gastroschisis/SBS baby By: (10:19 AM 03/09/2012)
I have had 3 children, 2 were born with Gastroschisis, by 2 different dads. My first (gastro) and second child (normal) were by my ex husband and my first recoverd from gastroschisis without any complications. My third child was by a different man, and he had perforations and obstructions that required surgeries, ileoostomies,and long term supplimetnal nutrition and care due to diagnosis of Short Bowel Syndrome. After the surgeries we have all had, we probably already know all about "puling feeds" before hand and holding them until recovered. My son has always been fed from a tube, whether it was through NG (nasal) or G Tube (tummy.) This is because the intestine he does have remaining after ileostomy and resection DOES NOT work properly and has very slow motility.My son Rocky, who is 10months old and still in ICU at UTMB of Texas(Galveston branch,)developed an extreme oral aversion due to being tube fed for so long. I was adamant about trying bottles here in ther, in small amounts, just so he did not forget how to eat or swallow. But Because he cannot tolerate a substantial amount of food at one time (the reason he is on continuous feeds)this was not an option until around 9 months of age. Once we decided to try 5-10cc bottles every now and then, by that time he had no clue what to do with it and definitely had NO desire for it OR any other kind of baby food. Things in mouth or around face = trauma for my little guy. Tubes, tape, pain... he relates alot of that to his face. We have been working on it for months now, with little to no imporvement, and i am afraid he will never develop the sensation, knowledge, or desire to eat and and swallow anything. Any words of advice? WE finally got rid of the NG tube and and began using the G Tube, which has helped him tremendously when it comes to him being so paranoid about his face being touched... but the swallowing aspect still isnt clicking yet.. Please help.