In the Hospital Again

Lucy is requiring more oxygen and has more fluid in her lungs, so we're back in the hospital. She was admitted Wednesday and unfortunately we have made little progress. She is most likely going to be scheduled to get a gastrojejunostomy feeding tube. A GJ tube is radiologically inserted through a small incision in the abdomen into the stomach, one port in the stomach and the other threaded into the jejunum. Her medicine will be delivered to the stomach and feedings will still be continuous into the jejunum. This will help get the tape off of her face so we can smooch her sweet cheeks. Obviously, not going to fix most of her problems, but we will be able to deliver her medicine more effectively and not worry about how well they are being absorbed in the intestines. Eventually with time, we hope to get back to bolus feedings with just using the G tube.

Still the bigger questions are why she requires so much medication post-op to keep fluid from accumulating in and around her lungs. We continue to challenge the doctors as to what can be done for a better long-term solution. We'll keep everyone updated on how Lucy is during our hospital visit. Thanks for continually keeping her in your thoughts.

Lucy Kate Update XIV

We have been closely monitoring Lucy's pleural effusion for the past several days and it hasn't improved or increased in size. It's a minimal amount that won't require another chest tube and hopefully it will not affect her breathing. It's most likely lymphatic fluid that slowly accumulated after we resumed feeding breast milk, and since we have changed her diet, no more should accumulate.

Lucy is now being fed Enfaport, which is a 30 calorie, iron-fortified, milk-based infant formula with MCT fat for babies with Chylothorax. MCTs are an important source of calories for babies with this condition, since they are not transported in the chylous fluid and therefore will not accumulate in the chest cavity. Lucy has been fed with a nasogastric (NG) tube since birth due to prematurity and also an increased risk of aspiration. She's always had difficulty swallowing because of hypotonia, which is low muscle tone. She normally received six gravity fed bolus feedings a day and each feeding lasted about an hour.

Lucy had been showing signs of extreme abdominal distension, cramping, pain and vomiting since starting the new formula. At first, we weren't for sure what was wrong. After further investigation and a KUB X-ray, we knew she had gastrointestinal problems and requested to have a consult with GI doctors.

The doctors think Lucy might have rapid gastric emptying also called dumping syndrome, which occurs when undigested food empties too quickly into the small intestine. Treatment includes changes in formula and medication.

We meet with dietitians on Monday to determine what can be done to change the nutritional makeup of her new formula for a long-term solution. Lucy is now receiving a continuous drip feeding of Enfaport to let her stomach readjust and allow her food to slowly digest over a longer period of time. Lucy never stops eating. We have never been so jealous in our entire lives.