Our little Lily

We have some sad news. Our little Lily was just diagnosed with cystic fibrosis. Lara found out she was a carrier earlier on in her pregnancy. After checking Brian for the same relatively common gene mutation, we all thought Lily was in the clear. As it turns out, Brian also has a gene for the disease. This particular mutation went undetected months ago as it is not one of the 40 more common genes that the doctors were searching for.

Cystic fibrosis is a disease that primarily affects the lungs and the pancreas. CF patients can be prone to lung infections due to increased mucus production. In addition, patients can have difficulties retaining nutrients and can grow and develop poorly due to insufficient secretion of the pancreatic enzymes. At this time, it has been determined that Lily's pancreas is functioning beautifully. We sort of suspected this as she seems to be growing big and very strong (we think we have a future Yosemite climber on our hands).

We are lucky that Kaiser Permentente in Oakland (where we are all members) has one of the most reputable cystic fibrosis centers in the country. We met with Lily's doctor, the head pulmonary specialist, recently. In addition, we met with a powerful team of nurses, nutritionists and social workers. After assessing Lily, it was determined that she is a very healthy baby. She is gaining weight, getting taller (well, longer) daily and seems to be generally thriving. At this point, given her stats and her genotype, it looks like Lily may have a very well functioning pancreas. To be safe, she can take enzyme supplements prior to feeding. We also will start Lily on a daily physical therapy regiment to ensure the healthiest lung function possible. These are all preventative measures.

As Nanny puts it, "we are going to take our cue from Lily." Since we met her, she has always had a healthy appetite, pooped and slept well. She has been nonstop smiles, gurgles and cuddles. We are enjoying her immensely and we are pretty sure she is enjoying us. We feel incredibly lucky and very hopeful.