Latest News

Well I can't seem to get an update on Caringbridge from this computer so hope everyone finds it here. I did get to see Dr. Ostlie on Monday and had a chance to ask our 2 pages worth of questions about what is going on with her. It was so nice to hear that he had checked in on her often during vacation and knew where we were with everything. He even admitted that there was a time that he worried about whether or not she was going to make it.---Seems like everyone keeps saying that.

After Sunday's episodes they decided to do a scan of her tummy on Monday. She did not have to be put totally under for it but instead was given meds to make her sleepy. It worked, but upon seeing her in recovery I didn't find a sleepy girl but a very playful one. She was babbling and playing! This was the first time I had seen this in almost 4 weeks. It was awesome and I took pictures. I'll have to wait until Dave gets down this weekend to post them.

Unfortunately, the test showed fluid in 3 areas around her liver. They do not know if they are absesses (infected pockets of fluid) or just fluid. My understanding is that it is fluid that was leftover from her whole swelling incident...not new fluid. The fluid/absesses are not hurting the liver. Guess I'm not surprised by all this. I just new something wasn't quite right and better to find it before we go home.

I woke up this morning to the most beautiful noise. At first I thought Ellie was upset then I realized she was playing and babbling. I went over to the crib to say good morning and got the best smile! What a nice change. The plan for today was to have the fluid taken out (they will do this by needle, they put a tube in to drain excess fluid). I was even hurried out of the shower and rushed down to Radiology with Ellie in her pillow covered wagon. When we arrived they told us there was a mistake and it has to wait until tomorrow when we have an anethesiologist present. Oh well. In the meantime, they decided to start her feeds back up this evening at a very slow pace of 10 ml per hour and increasing 2ml more every 4 hours. Of course she won't get very far since they have to stop feeds at midnight due to her procedure in the morning.
Oh, and the best news is that Dr. Ostlie gave permission to try oral feeds again 3 x a day. Only about 10cc which is small but enough to practice with. When I gave her the cereal, she tasted it with her tongue twice then opened her mouth wide for a big bite. She went back to eating like she hadn't missed out on anything!!! This is so awesome. One less thing to reteach. Well, I'm off to bed to get ready for a busy day. Talk to you all soon.