Sunday, September 13, 2009

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.


Anne and Whitney: Up, Down and All Around said...

just to let you know, our daughter Whitney had to have an ng tube inserted when she was about 2 weeks old because she was in congestive heart failure and unable to nurse or take a bottle anymore because she had become too weak and also she had 80% more blood flow going into her lungs than she should have had due to her mitral valve issues (+ additional holes in her heart). The doctors told us to fortify breast milk to make it 27 calories and eventually 30 calories to try to get her to gain weight so she could get bigger for her open-heart surgery. This did not work because the formula made her so incredibly sick that as time went on her GI problems became worse and worse until one day I could not stand to see her in such pain so I decided on my own to give her straight breast milk. Within 24 hours she was noticeably feeling better and the cramping and extreme GI pain had subsided. I was able to eventually introduce Similac Alimentum mixed with breast milk, slowly adjusting the amount we were introducing and never going above 24 calories... we would make 2 ounces exactly as indicated on the formula and mix that with breats milk (for example - if we were giving her 4 ounces total we would mix 3 ounces of breast milk with one ounce of alimentum and NOT fortify or add extra powder to make it higher calorie).

I am NOT a doctor and I do not want to cause any problems by sharing this story with you... I just wanted to let you know that we went through a very similar struggle with fortified formula... we did not experience the lymphatic fluid leaking into the pleural cavity, so I am sure there are complicating factors --- I hope you don't mind that I shared our experience... I hate to think of Lucy in any pain like Whitney was from the fortified/extra calorie mix we were giving her!!!

Hope things improve VERY soon!!!
thinking of you!

Sasha said...

Glad to hear that she is doing somewhat better. My little one has a ng from birth. He is down to 24 cal right now but has been up to 27 cal prior to OHS. It did cause him a lot of gas. Hopefully they figure out how to make her happy and much more comfortable. Take care.

Cara said...

Lovely Lucy, you have so grown since August! Thinking of you & your pink cheeks, miss you! Miss Cara