Monday, April 6, 2009 Another Day And More Waiting

I didn't get to go see my little girl today, but i have been on the phone with the nurse checking on her 4 different time today already. Shailee has been having a good day, she is still stable. I wish i could be there to see her today, the nurse has her out of her isolete and in a crib, but she has clothes on her today and a blanket, but she is hoping that she will be able to be out Wednesday when we go up too. we are still unable to hold her but that is because if they have her propped up she gets more secretions in her throat and it will affect her oxygen and heart rate :( they are still suctioning her regulary to keep her airways clear, and that is because she doesn't swallow. They told me today that she does have a gag but not enough of one yet, and the swallowing usually follows the gag so they are hoping that as she gets closer to her due date, which is April 18th that she will begin to develop these things, but once again, we will have to wait and see. they started giving her formula via the feeding tube last night and she is doing great with it so far, she isn't getting much, only 5 cc's every 4 hours but it is enough to see how her body is going to handle it. Shailee was recasted today and they said that her club foot is looking really good so they repositioned it and recasted it for another week and then they will do it all over again until it is either fixed or it isn't working anymore. i pray that this will work and she wont have to go through anything else with it. I tried to get the info from the final report on the chromosomes but the nurse was unable to understand it so she had me contact the geneticist's office to set up a meeting with him to find out what was going on, and they told me that they couldn't get me in until May 1st! my heart sank because i really want to know now, but the nurse called me back and she was able to get in touch with him for me and let him know that i want to know all the info and they are going to call him first thing when we get there wednesday and hopefully he will be able to come and sit down with us and catch us up. Shailee also had another thyroid test done today but the results are not back in yet, but the nurse told me that if they have abnormal findings that they generally call them in to the nurses and they haven't heard anything, so i am hoping that no news is good news in this case. Well that is about all on Shailee today, i will update on her again tomorrow, and hopefully Wednesday night i will have more information on her chromosomes and if the cri du chat is the only thing she has or if there could be other problems as well. I am now off to do what i am doing best these days, waiting.