Not a good day :( Here is the summary I wrote in Aria's baby book:
"We have been in what Daddy calls a 'holding pattern' for a couple of weeks now. You have stabilized greatly compared to when you were born and are only on a couple medications now, but no further improvement is being made. If we want to move forward with trying to make long term improvements we need to start thinking about having some surgeries done, such as a tracheotomy for breathing and a G-tube for feeding. Right from the beginning though, Daddy and I have felt like we really wanted to avoid putting you through any surgeries if possible. So we went to the temple tonight to try to figure out what was the right thing to do for you, then we planned to visit you afterward. As we were driving to the hospital, Daddy was right in the middle of saying that maybe we should go ahead and do what was needed to bring you home when my phone rang. It was your doctor saying that you were sick today. You had been running a fever and had a very tight stomach, so they did some tests and an xray had showed pneumatosis, which is gas cysts in your intestines. They were afraid it was caused by an infection of some kind. She explained that things could go bad very quickly if it perforated your bowels, but they had caught it relatively early and would be running tests and repeat xrays every 6 hours in order to keep a close eye on it. For now they would be starting antibiotics and stopping your milk feedings to keep your intestines clear until this cleared up.
When we got to your room, we could tell you felt sick. You looked miserable and restless, just like any baby that gets sick. We of course did not hold you, since you already have problems overheating even when you don't have a fever. Instead we gave you a nice bath, which is one of your favorite things (just like Bennett!) By the time we had bathed you and sat with you a while and helped you get wrapped up with your favorite Froggy, you looked much more comfortable and fell asleep. Until that point we had debated if I should stay at the hospital overnight with you in case things didn't look good, but you looked so much happier already that we decided to go home and get some sleep, just like you."
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