I received this, and would appreciate feedback. Any comments, please direct to me, at [log in to unmask], and to list. Thanks. Kathleen From communication sent to me: "My baby was born with a very rare blood disease (Langerhans Cell Histiocytosis X) and spent the first 4-1/2 months of his life in NICU at a local Children's Hospital. One of the symptoms of the disease, however, is "failure to thrive." From the time he was born, baby would latch on to the breast eagerly, but after five or six minutes of nursing would begin vomiting profusely. He has been sustained by IV fluids since the day he was born, although we continued to attempt breastfeeding every few days. He was unable to take anything at all by mouth. At 4-1/2 months they did exploratory surgery and found that the disease had caused an intestinal blockage. The blockage was bypassed, but even after 2 weeks he was unable to keep anything down. Determined to breastfeed, I purchased a Medela breastpump pumped every 3 hours for 5-1/2 months. We have over 900 bottles of frozen breastmilk in storage. When we finally brought him home from the hospital (at 5 months old) we continued to feed him enterally (through IV fluids) but I also began feeding him breastmilk through an NG tube at a rate of 2cc per hour. That was all he could handle at the time, and even at that low rate he vomited most of it back up. Each day I increased the rate by 1cc per hour. To make a long story (somewhat) shorter, baby is now 6-1/2 months old and is now able to handle 60cc per hour through his NG tube. He is also able to breastfeed now, but after all these months of being fed through both an IV and through an NG tube, he doesn't seem to connect nursing with hunger. He enjoys nursing, but falls asleep after 5-10 minutes at the breast. We are trying very hard to wean him from the IV feedings ($550/day) but don't seem to be able to get him to take enough breastmilk on his own to thrive. He is now 6-1/2 months old and weighs 13 lbs 3 oz. Some weeks he doesn't gain any weight at all and some weeks he actually loses 1-3 oz. He sleeps 12 hours each night. I have tried to wake him up, but it is nearly impossible. When he nurses during the day, he falls asleep after 5-10 minutes at the breast and is NEVER able to nurse from both breasts. The doctor keeps stressing that we need to be able to determine exactly how much milk he is getting when he nurses, but I don't have a clue. We also don't know how to encourage him to take more milk. We can't afford to cut back on his nightly drip feeding and take a chance on him not getting enough milk but are desperate to get him to nurse like a "normal" baby. Can you give us any advice? He is receiving chemotherapy for this condition. A desperate mother,xxx" Kathleen B. Bruce, BSN, IBCLC co-owner Lactnet,TLC, Indep. Consultant in beautiful Williston, Vermont, USA mailto:[log in to unmask] LACTNET Archives http://library.ummed.edu/lsv/archives/lactnet.html