Lincoln’s story

October 18th, 2009 by Lora Rossman

Our son, Lincoln was born at 25 weeks and 1 day on April 5, 2009. On day 11 he developed NEC. The bowel had perforated and emergency surgery was performed. The surgeons were optimistic that the amount of small intestines remaining would maybe someday allow him to be fed orally. We were sooo relieved.. then a brain ultrasound showed a massive brain bleed/ivh likely caused by the surgery. We were devestated.. it was a grade 2 on the left and grade 4 on the right.. we were told he had a 66% chance of having a severe disability.. likely cerebral palsy etc.. it felt like our world ended that day. He continued on and began to improve.. luckily no seizures and eventually the bleed has resolved without the need for a shunt.. thank God! The unimaginable then happened.. he got NEC AGAIN!!!!!!!!! They delayed surgery until a barium study showed strictures/blockage/fistulas in his intestines and they operated again. This time he was left with less than 25cm of intestine and they removed the ileocecal valve. He is now left to live with extreme short bowel syndrome and is indefinitely hospitalized.. they said it could be years before he could come home. He is 100% tpn dependent but does receive tiny amounts of pregestimil through his g-tube. He was up to 5cc/hour until last week.. his little body just can’t tolerate feeds.. they dropped it down to 2cc/hour and that’s where we are at now. On a good note he seems to be perfect in every other way… he is hitting his milestones and hasn’t shown any signs of major disability yet.. he is a joy to be around and absolutely gorgeous!! He is off all oxygen for over a month! They said he may be a candidate for transplant but since his liver is not severely damaged yet from the tpn they will keep watching and waiting in the hopes that his intestines will grow and that he can someday have his tpn amount lowered.

Leave a Reply

Your email address will not be published. Required fields are marked *