Emily - posted on 10/22/2009 ( 9 moms have responded )
Hi my name is Emily and my 8 month old is Maddox. He was born 2 months premature and stayed in the NICU for the first 3 months of his life, he was diagnosed with NEC art about 1 and a half months because of a diaper full of blood rather than poop and treated, by the time he came home we thought everything was fine (except for that nagging feeling in the back of my mind). The day after he came home he was right back in the hospital with blood in his diaper yet again! Come to find out it was a severe milk protein allergy and we had to change his formula yet again. He never had reflux until he was about 3 months old (which leads me to believe that this whole mess all stems from the regular milk formula that they were "supplementing" my breast milk with for extra calories) The drs had him on a massive dose of Prilosec and Reglan and the prilosec was upped quite often because he was so very uncomfortable and vomiting constantly. It got to the point that he seemed to understand that if he didnt eat he wouldnt vomit, so he stopped eating. After staying at 12 pounds 3 ounces for at least a month and a half the doctors called it "Severe Feeding Aversion". so basically my baby is to smart for his own good? He was put back into the hospital for the placement of an NG feeding tube. After what seems like a million tests and colonoscopy and endoscopy they are still saying that he has severe reflux and a feeding aversion. We started solids last month and he has been doing amazing with them, but still hates to drink. Other than the constant snot and cold caused by the NG tube, Maddox was gaining wieght again (and of course still vomiting, but getting what he needed) I was recently advised by his GI specialist to remove the tube for a day or two and see how he goes, he was amazing with his solids but still didnt drink enough, so I had to put the tube back in. Now he refuses everything! he doesnt want to eat anything with the stupid tube in his nose and down his throat, and i dont know what to do. The drs have talked about a surgery to put a feeding tube directly into his stomache, and another surgery to actually stpo the reflux. Is there anyone out there who has been through a similar situation?? Can you give me any tips?? Are these surgeries as scary as they sound to me?? Oh and after being very aggressive with the prilosec dose the drs have layed off nad havnt adjusted his dose since he was 12lbs 3oz and now he is over 16 lbs! he is arching constantly and screaming when he vomits and refusing food all together......I have to add that through this whole delema Maddox is the hapiest baby I have ever seen in my entire life! He barely ever cries (unless he is hurt or has gas) and smiles constantly, nobody can believe how happy he is (which is amazing and I love it) but he is constantly at odds with his own body. Please I hope someone can help me or give me some advice on how to get him to drink or tips on dealing with the insanity!