Surgeons or Weather Men?

Wednesday, April 8, 2009 - Lee has decided that surgeons should no longer give dates of surgery - they should instead give a "percentage chance" that surgery will occur on a given day. We were told this morning that Elle's heart surgery has been postponed until Monday. I asked one of the doctors what the percentage chance was that surgery would actually occur on Monday and she just laughed and said she didn't know. She also agreed that surgeons should predict the chance they will go into surgery! I'm thinking that there is a 50% chance it will occur on Monday and a 50% chance that it won't occur on Monday! I was talking with one of the neonatologist residents and I told him he had to break the news to Dr. Edmonds that Dr. Morales was postponing the surgery. Dr. Morales was the one that had pushed Dr. Edmonds to move Elle's surgery up to the beginning of the week rather than the end of the week. Dr. Edmonds obliged Dr. Morales and stayed late yesterday to get Elle taken care of. He even made the comment when he was talking with us after surgery that he would be mad at Dr. Morales if the heart surgery was postponed. I hope he was joking! I wouldn't want Dr. Edmonds to be upset - he is too handsome to get upset (he looks like he should be a doctor on Grey's Anatomy or some other medical tv show)! Whatever the case may be, I am so thankful that it won't be tomorrow! Our little Elle had a HUGE day today and I just don't think she is ready for the operating room again just yet. I am also secretly glad she isn't going to surgery tomorrow for a very selfish reason - I want to dress her up in an Easter dress on Sunday! I already have one washed and pressed just for our little princess! I was talking with the nurses in the NICU yesterday and they said I could dress her up on Sunday - but if she was in the CVICU (cardiovascular intensive care unit) - they probably wouldn't let me put a dress on her. It's the little things that make me smile!! Yesterday and today have been big days for our little miss. Yesterday was her daddy's first time to hold her! Andrea, our day nurse yesterday, finally talked Lee into holding Elle before she went down for surgery. I know he was so nervous holding her for the amount of time that he did - but he did such a great job! He is already such a great husband and father - but I am counting down the days until he gets to hold her free of tubes and machines beeping at him! I tried to get some pictures this morning of the tubes Dr. Edmonds put in Elle last night, but unfortunately, you can't really see them. I told Elle that I hope she enjoyed her first and LAST nose ring. This morning was relatively quiet. The cardio team made their rounds and that was when they told us that surgery had been moved to Monday. Neonatology made their rounds and decided to start feeding Elle again. She got her first "meal" since Monday at 6:00pm this evening. She is back at 18cc. If she can continue to tolerate her food well, they will continue to bump her up until surgery. Neonatology also requested that her breathing tube be taken out. She had stopped receiving morphine at 8:00am this morning and was starting to come out of the anesthesia - so they wanted to test her breathing limits. Of course this made me nervous. Lee had already left for work and my friends that had come to visit had already left too. At 2:00pm, Dr. Davis (the kind neo doctor from a few days ago) came and stood over me as I was talking to Elle in her crib. Dr. Davis told me I had to give Elle a pep talk because it was about to be show time. I indulged Dr. Davis for the next 30 minutes while the cardiac team re-assembled next to Elle's bed, as did the respiratory therapists and a slew of neonatologist and nurses. It really took an army to take out Elle's breathing tube. When the crowd started to gather, I grabbed my computer and bag and headed for the waiting room. There was no way I was going to sit there and watch them pull out the life support my daughter has grown to depend on for the last 2 1/2 weeks! Surprisingly, I was calm for the whole event - the pep talk I gave Elle, the walk to the waiting room and even the wait in the waiting room. I got out my computer and had just logged on to the Internet when Dr. Davis came rushing out of the NICU. I was terrified until Dr. Davis told me that Elle was doing great and was crying so I had better hurry up and get back there. I threw my computer back into my bag and grabbed my stuff and Dr. Davis and I literally ran back to Elle's bed - sure enough - she was crying the most perfect hoarse cry! I only heard it for a second before she calmed down - but it was so sweet! I can not wait for her to get her voice back so I can hear her cry. She doesn't have a voice right now because the breathing tube was down her throat for so long. It was amazing to see our little girl breathing out of her nose - thank you Dr. Edmonds!! Elle and I spent the rest of the day working on her breathing out of her nose. She isn't on any sort of support right now - she is doing it all on her own! It makes me so nervous too because when she had the breathing tube in - if she stopped breathing - the machine would still breathe for her. Now, she doesn't have any back-up support. Estrella, our day nurse today, showed me how to suction out the tubes that are in Elle's nose and what to look for to be sure they are clear of any junk. Since she hasn't been too active in the last 14 days, mucus has settled in Elle's chest and nasal passage ways. The more she moves around, the more that will come up - so we spent a good majority of the afternoon hovering over Elle and suctioning out her nose every 5 minutes. Since Elle will have the tubes in her nose for at least 6 weeks, I will have to take care of Elle's nose when we get home. They are going to send me home with a suction machine and all the tubing. Definitely not a glamorous job, but I wouldn't want it any other way! If Elle needs oxygen tonight, they told me that they were going to put an oxygen hood over her - I have no idea what that is - but I am praying that she doesn't need it. My poor brother came up to visit this evening and was subjected to Elle's first post breathing tube hissy fit. It was horrible! She was crying (hoarse, pitiful - make any heart melt sounds) and turned bright red. Ben was holding her hands and I was trying to comfort her by "hand swaddling" her - one hand on her head and one hand on her feet. She didn't want anything to do with us. It just so happened that Elle has a nurse tonight that doesn't know her and the nurse was 15 minutes late with Elle's dinner and I was being a bad mom and didn't change Elle's diaper soon enough. Once she got her dinner and diaper changed, Elle calmed down and fell asleep (breathing out of her nose!). I pray for a very quiet night tonight. Not only for the sake of our baby, but also for the nurse she has tonight. It's a nurse I have never seen and I am extremely nervous not being there for her first night of no breathing tube. The Lord works in mysterious ways because this morning we had signed up for a room at the Ronald McDonald House here on the NICU floor. Since we thought surgery was going to be tomorrow - we thought it wold be best to be right here. When we found out the surgery had been moved, we called and canceled the room. I guess the Ro Ho just decided they wanted us to stay because they never canceled our reservation and this evening one of the ladies that works here brought us the key to our room for the evening. We are literally 15 seconds from the NICU door and our daughter in case anything happens...but I am confident everything will be fine! The Lord is with our little angel!!

** For some reason, I am not able to post some pictures of Elle without her breathing tube in. I will do my best to get more pictures up tomorrow of our little nose breather!!**