My Beautiful Baby Girl

So much has happened that it is hard to keep up with. It seems like forever ago that I had a happy, healthy little fat cheeked baby girl that I was loving on all the time. Now I a left with a little girl whom I love dearly, but who is fighting for her life. I am told that since she is sedated that she doesn't know what is going on around her. However, when I read to her or talk to her she tries coming out of her sedation- her eyes start moving and her heart rate increases- she knows that I am there. I am angry, I am sad, I am depressed, I am.. I don't know what I am anymore. Half of my heart lays in a bed in room 238. That half of my heart is hurting, that half of my heart is lost, that half of my heart doesn't understand what is happening to her. The other half of my heart is not hurting, the other half of my heart is not lost, the other half of my heart doesn't understand where the other half is. I am blessed to have half of my heart with me. I am blessed that half of my heart is completely healthy, happy & well. He keeps me going- he gives me hope. Cami is still the same- her most recent RSV test came back negative- however, she still cannot breathe on her own. The breathing machine was too strong and put a hole in one of her lungs. Due to that happening, she had to have a procedure done where a tube now drains air from her chest cavity so that her lungs can fully inflate. My poor little Angel has so many tubes & wires coming from her that I do not even know where to begin. She cannot keep her temperature up to a normal range- her temp keeps dropping to 95 or 96 something. So, she has a heating air blanket on her at all times now to help with her temp. She has the EEG machine connected to her at all times as well to monitor her seizures. She was seizing pretty regularly, but since they put her on a new medication she has not had another seizure yet- however, the EEG machine remains to be sure that she is not having them any more. She has 2 tubes in one of her nostrils- one is her feeding tube and the other is so that they can drain fluid from her stomach to see how much she is actually digesting- she is doing very well on that end. She has the tube that is draining air from her chest wall, she has a catheter in her hoo hoo, a thermometer in her rear end, a central line in her thigh, an iv in her hand, an iv in her foot, 3 drains in her head, the breathing tube in her mouth and down her throat and wires all over the place. Due to the medications she is on, she is having to have suppositories to use the rest room and it is just awful. I would trade places in with her in a heart beat. We had the meeting with the neurologist who showed us her MRI'S. I was under the impression that she had 4 bleeds in her brain- well, that is not correct. She has 4 large bleeds.. however, she has over 20 small bleeds as well. Please continue to pray for my baby girl. She needs all the prayers that she can get.