Fri Dec 21 1:20 PM
This is Lynn here are we are just waiting for another CT scan. The transfusion is almost done and her blood pressure (which was low overnight and this morning) and is starting to come back up again. She is regaining a little color as well. Poor baby only has a little patch of hair left. I feel like crying and laughing at the same time when I see that sorry little remnant of her once beautiful brown locks. Well, it will grow back I am sure. We miss her so much and that's ironic since she is sitting right next to us. Must be because we cannot hold her.
Fri Dec 21 10:45 AM
Today has been a little more difficult for me (Beth) to deal with. I don't think I realized how much I would miss holding and kissing her. Aimee has only a little corner of hair left on her now perfectly round head. They have an external shunt that is draining all of the fluid from under the scalp that was causing her to swell up towards the nape of the neck. I am so glad that I can be close to her, but I wouldn't wish this on anyone. Ever since the last shunt surgery she has been pretty pale. She has not had anything to eat since the 18th and they are talking about putting in an NG tube (Feeding tube through the nose) in after they take out the breathing tube today. (She is getting all that she needs from an IV though) I can't wait to see her cheeks rosy again. She has to have a transfusion today because one of the tests that they took showed that she is a little low on something hard to pronounce... I don't understand some of the medical jargon that has been tossed out lately. Lynn and I are doing alright. It is going to be so nice to sleep in our own bed though. Every night they take an X-ray of her to make sure that the breathing tube is in place and so every night we get a lead blanket draped over us and people swarming around. I think I am getting a little more use to it, but it was a rude awakening for Lynn! We had some visitors from Lynn's unit and also Lynn's younger brother and sister and dad arrived from out of town yesterday evening and got to see our little trooper. If you do come to visit it is a real shock and a little hard to see her in this condition. Right now I can't think of anything that we need. Just prayer for our little girl's healing from the surgery and rest for us. Love you all so much.
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Hey Beth and Lynn,
Beth you are such a wonderful Mommy – your Mommy would be sooo proud of you. And Lynn you are very strong Daddy. Thank you both so much for keeping us all so informed. I have stayed glued to the blog; check it almost every hour. Beth when I read your words, I can hear your voice in my mind and my heart aches for you. We love you both so much and we wish we could be with you. Kiss Aimee for us and give each other a big hug from Uncle Squat, Auntie Peggi, Adam and Zach – ALL OUR LOVE!!
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