Setback (posted by Julia)

Grandma stuck it out in the ER all night til we got our room at 3:30 AM

Ascities. Big belly. Humpty Dumpty (says jonah) whatever you want to call it. Can't wait till her tummy is not a source of such discomfort.

"Leave me alone, give me some air/oxygen and get out of my pretty little face. Thank you."

Sunday night, Lizzie and Grandma Barnum took LuLu to Primary Childrens emergency room. London had been lethargic, unable to stay awake after naps and whimpering throughout the day. I think I mentioned before how hard it is for Lizzie and James to know what is bothering LuLu on any given day.

By the time Grandma (NICU nurse) arrived to check on LuLu, her breathing was becoming labored and she was clearly in pain. The ER admitted her to the hospital @ 3:30 am after hours of exams, waiting, procedure, waiting, waiting, waiting. Since she had a mild fever, they suspected that the fluid buildup in her abdomen might be infected. This is a scenario which Dr. Book had mentioned before, and something that Lizzie and James have dreaded. It was decided that her bulging belly finally needed to be "tapped," or drained. They took out about half a liter, with more to spare. They had to leave some fluid to keep her electrolytes and sodium in check. All my mom would say the next morning is what a horrible, horrible night it was for London at the hospital.

It was determined that LuLu has a bacterial strep infection in her blood and belly fluid (ascites). She's receiving IV antibiotics and a narcotic for her pain. It's heartbreaking to see her fighting so hard. She doesn't have any fat reserves and she's just a limp little noodle-no energy at all. She occasionally comes out of her sleep to cry out in pain. I keep thinking about all the calories it takes to fight off such a serious infection and it makes me worry about the 3 pounds she needs to gain before her upcoming transplant. This will be her longest, most serious hospitalization to date.

Get well, Sweet LuLu.

On a side note, I could cry every time I think of James and Lizzie. They are an amazing team, and man, do they ever love Jonah and LuLu. They work tirelessly to give London the best care possible, and they go above and beyond to show Jonah that he's not playing second fiddle in their family. They are some of the hardest working, most thoughtful and generous people that I know. It's been inspiring to see them take life's punches with hope and grace intact, and their feet firmly planted side-by-side.