My, my. The past few days have been tiring me out and I have yet to catch my breath.
This past weekend my older sister and her 4-year-old daughter came up to meet Liliana. It was great and I think it gave Sean and I an idea of how little girls behave (or don’t behave, more like). We made some guava and cheese pastelitos, which I have been missing since moving from Miami. It was an easy recipe and something I would definitely keep making, though I’d probably make them bigger to conform to the proportions in Cuban bakeries. We also made pancakes, with my niece helping, and although I dream about the days where I can have Liliana helping me in the kitchen, I can now imagine all the safety issues inherent in having her with me while I’m cooking. Nonetheless, it’s something I’m looking forward to.
My sister and niece flew back to Miami on Monday. My house is still a mess.
Yesterday the three of us (Sean, Liliana and I) went to CHOP for our 3-month appointment in the Pulmonary Hypoplasia Program. We discussed Liliana’s issues with a number of doctors, nurse practitioners and specialists; at the end of the day, we received a prescription for bethanechol to strengthen the muscle between the esophagus and stomach, two cans of formula to fortify my breast milk, and reports from the GI tests we had done in January.
We were shocked to learn that Liliana has gallstones. Apparently it can be caused by too much bilirubin:
[One of the main types of gallstones are] made from too much bilirubin in the bile. Bile is a liquid made in the liver that helps the body digest fats. Bile is made up of water, cholesterol, bile salts, and other chemicals, such as bilirubin. Such stones are called pigment stones.
Sean remembered that while Liliana was in the NICU, someone said something about her having high levels of bilirubin. In any case, the main doctor we were seeing said that usually they don’t do anything about gallstones, but if they were to do another surgical procedure in her abdomen, they would consider the removal of the gallstones.
Another worrisome fact is that Liliana’s growth is falling off. She should be gaining more weight, which is difficult to do when she throws up so often, so now we’re fortifying the milk to give her more calories. Sean and I are both excited about it, and we’re hoping that she’ll get bigger and bigger.
She’s awake from her nap now! It’s time for me to catch up with the housework.