Elle Burrito

Thursday, April 16, 2009 - When Lee and I left last night our little princess was not a happy camper. It was so tough to watch and not be able to do anything as she just cried and cried. She had been given morphine at 6:00pm with the hopes it would calm her down. She gets so mad she starts to turn red and then she turns purple - not something any parents wants to sit there and watch. All we want to do is pick her up and tell her everything will be ok! I started to think back to the morning and her reaction to the morphine she had been given at 8:30am. It had been similar to her reaction this evening - she would fall asleep and we would think she was doing ok and then all of a sudden - the crying and carrying on would start again. I don't think she likes morphine very much - either that or it doesn't have that much of an effect on her. You could tell she was still in so much pain. The nurse waited a few hours and then gave her some Tylenol with codeine in it and she was asleep and peaceful within a few minutes. Tylenol is Elle's key to peace! We left her bedside when we finally got her to sleep around 9:00pm. We called periodically throughout the night and early morning and she slept for 6 hours once we left. Yeah!! All in all she had a good evening once we figured out that she is not a morphine girl! I got to her bedside bright and early this morning. As soon as the NICU doors opened and I walked in, I could hear her cry from across the room. The only thing I could do was smile and say "yep - that's mine!" Elle had a rough morning coupled with the fact that I had a rough morning. Neo made their rounds and said that everything looked good. They wrote the order for the Occupational Therapist to begin working with her on feeding. They also said that their goal is to get her to eat so she can go home. My thoughts too! I missed the Cardiac team's rounds - but Princy - one of the absolutely wonderful nurse practitioners - came by and brought me up to speed. When they did Elle's x-ray this morning, they noticed that there was a slight build up of either fluid or air around her chest tube. Everything had been fine with her chest tube until today. It wasn't suctioning out any fluids and the Neo team had even suggested that it should be taken out today. Cardiac's solution to removing the build up was to put an oxygen mask on Elle. It's bigger than her face (you can't really tell how big it is from the picture)! The mask pumps in oxygen into her mouth and nose and helps expand her lungs. Their thinking was that her lungs expanding would push the fluid/air out. We are waiting on another x-ray to see if their thinking worked. While it was tough to see the big mask on her face, Elle did really well as far as her breathing for the rest of day. The occupational therapist came and worked with Elle on eating. She was able to take 1.5 cc from the bottle and 1.5 cc from a syringe and her pacifier. We still have 57 cc to go before she is eating her full feeds from the bottle. But - every little step is still a step forward! OT will be working with Elle everyday to get her to breathe out of her nose and eat at the same time - she said it might be slow going...but we are prepared for that! This afternoon was a lot better than this morning as far as Elle's comfort is concerned. My poor baby gets so upset sometimes! The closest thing I can to do holding her is to sit her up in her little bed until she calms down. She just looks at me with those big eyes and eventually stops wailing. I can't wait for the day when I can pick her up and walk around with her and tell her that everything will be ok! I know that day is coming soon - I can't say when it will be here, but I just know that it is coming soon!

The nurses have figured out that 1) Elle likes to be swaddled - hence the Elle Burrito and 2) if they don't swaddle her - she pulls at all the wires - which is never a good thing!