MOMMYTO3SWEETPEAS
New member
Hello. My name is Lori. I am a sahm to 26 months old GBG triplets - Julie, Charles and Lily. I apologize in advance as I'm sure this will be lengthy. My kids were born at just 31 weeks gestation. All of them required NICU time right away. At 3 days old my son (who only weighed 3lbs7oz) was dx with a CHD - Aortic Stenosis with Bicuspid Aortic Valve. He has had 2 heart procedures - the first at 7 days old, a carotid angioplasty to fix the stenosis and open up the valve... between his first and second procedures as he grew his artery and valve tore more creating back follow of blood into the heart... the second procedure was completed at 4 mos old, an open heart procedurecalled the Ross-Konno procedure. They took Charles pulmonary valve and put it in place of his aorticvalve and put a conduitin place of the pulmonaryvalve.He willoutgrow the conduit and will always have a heart condition and need to be observed my his cardiology team and will have to have more open heart prodecures in the future.They also found out that his valve was infected and had to be on antibiotics for 28 days through a broviac inpatient. He since has good reports from the cardiologist. After having his open heart at 4 months, he was very difficult to feed, which I was told was common in young heart patients. He also developed reflux, or so it was dx. He was on prevacidand zantac. His dosing got to be too high that the pediatrician referred us to a GI doc. She followed him from there. He became FTT. I really don't know what my husband and I were ever thinking by staying at that office for as long as we did, but it was almost a year and half of being told... we need to get him to eat more, higher fat food, he isn't drinking enough, etc. Finally, she suggested an endoscopy to investigate reflux as she stated. As soon as she suggested that it be done in an outpatient facility I ran. He is a cardiac patient, he needs cardiac anesthesia. It was an invitation to leave and go to duPont, where Charles' cardiology team is. We got our second opinion at duPont and the first thing he did was test his stool, which one of the test came back abnormally low for pancreatic enzymes. He then had reason to do the endoscopy. We got the results back on 1/12/12 and Charles has abnormally low enzymes for stratch, protein and fat. He is 26 mos and only 23 lbs and 32 in. He was put on creon, I don't have the exact info infront of me, but it is 3-4 capsules a day. 1/12/12 he had labs completed to test for CF and Shwachman-Diamond Syndrome. Today, 2/13/12 we got the results for the CF and he has 1 mutation, CFTR and his is at thevery least acarrier. I hope I'm writing this correctly. I don't completely understand any of it. He said his mutation is extremely rare. He is now scheduled for a sweat test on the 21st. It took a whole month for the results to come back and the other results still aren't in. I don't know what to do or think. I have spent the entire night trying to figure out what my boy could have ahead of him and thankfully found this site. I'm not really sure if there is a question here or just an introduction. Thanks, Lori <img src="i/expressions/face-icon-small-smile.gif" border="0">