I thought today was going to be a good day when I went to Dunkin' Donuts and found out it was National Donut Day and I got a freebee.
But things started going bad at lunch when I got cornered by the lactation nazi. I tried to be subtle and respectful when I told her that Lexi was nursing fine and we didn't need her help. She didn't take the hint. "I still want to stop in and see how she's doing," she says. Grrrr.
Then on my way up to Lexi's room after lunch I pass nurse nut-job. Luckily she didn't try to disinfect me or anything. She just asked about Lexi and went on her way.
But as I got back to the room, I was surprised to find they were in the middle of doing an x-ray. No one had told me that an x-ray had been ordered. My first thought was: uh-oh, I wonder if they saw something on the echo yesterday? But I quickly blew it off remembering that they were doing some miscellaneous double checks on random things before they send her home and since we already knew that Lexi had a small ASD and VSD (holes in her heart), it would be no surprise. Not long after that, Dr. A walked in the room and I knew immediately that she had bad news.
When they did the echo yesterday, the ASD was gone (good news) but the VSD (ventricular septal defect) was bigger than they originally thought. Much bigger. It's large. Alexis will have to have heart surgery. They have just started her on a diuretic to drain some of the fluid. They will monitor her heart for the next week or two to see if the diuretic works and if it does, Alexis will most likely be able to come home for a few months and then return to the PICU at St. Vincent Children's Hospital for the surgery. If the diuretic doesn't work, they'll do the surgery soon and she will stay in the NICU. For selfish reasons it would be nice to just get the surgery done and stay at the NICU where we already know so many nurses and doctors. But it would be much better for Alexis to be able to wait and grow a bit. If she can wait a few months to have the surgery, the recovery will be easier. Dr. A said that the recovery time in the hospital would be a few weeks most likely--not near as long as this hospitalization has been.
Dr. A was just as surprised as us by this news. Lexi is deceiving in that she always looks so good and healthy and is never in any distress. Dr. A said that before she saw the echo, she ran into the cardiologist this morning who was looking for me and Dr. A said, "why would you need to talk to her?" Apparently the cardiologist was in this morning to see Alexis and says she's already in heart failure. IMPORTANT NOTE: the term "heart failure" is misleading. To me, it conjures up images of flatlining and paddles. But it's nothing like that. It just means that the heart isn't working like it should.
Jason and I meet with the cardiologist tomorrow at noon.