Liliana Sue

I'm very sorry that it has been a week since my last post. I can't believe that a week has passed already. It has been a great week with liliana but a busy week with everything else going on. Liliana continues to do great. She is happy as can be. She smiles more an more. She soaks up all the attention that she gets and sometimes when you have to step away for a moment she starts to cry. When you come back and talk to her and caress her she stops right away. I'm starting to get more comfortable with handling her since we are on our own a lot of the time and don't have the nurses to help us. I was holding her yesterday in my arms while I was standing. It was the greatest feeling. I wasn't used to holding her this way and my arms tired real quick. Now that I know what I am doing I will do that more often. We have had to take Lili on two more trips outside of the house since I last wrote. She has had to go and get blood drawn and she has had a checkup with another one of her doctors. He said everything looks perfect and he can not believe how relaxed we are with everything. That makes me feel good. Yesterday was an adventure to get to that appointment. Everything that you think will never happen did. When we first started our trip things were going great as usual. We got onto the highway and after a couple of minutes Lili needed suctioning. The nurse tried to suction her but the suction machine would not suck. She continued to try and get it to work but was having no success. Liliana continued to desaturate so I had to quickly pull over on the side of the highway and hop out. LeeAnn handed me a De Lee suction catheter and continued to try and figure out the portable suction machine. For those of you not familiar with a De Lee catheter, which I assume is most of you myself included up till yesterday, it works manually. One end of the catheter goes into her trach and the other end goes into MY mouth. I had to manually suction her about 5 times using only the suction generated by my own lungs. It was quite a new experience and worked perfectly. Liliana's oxygen saturation returned to normal and LeeAnn figured out that when the lid to the suction canister was put on something got wedged between the lid and the container which would not allow it to create a suction. I don't think that mistake will be made again. The rest of the day went fairly well. Her doctor visit went great. The doctor said that everything looks great and he gave us some suggestions about weaning her vent by doing CPAP trials. It was very tough getting back to work this week after having 5 days off when she came home. My first day back I felt sick to my stomach. After I saw how well LeeAnn handled everything on her own, my jitters went away. My 4 day stretch at work went on without any major problems at home and now I am off and can't wait to spend some time with my baby girl. I'm excited for Saturday. It looks like we don't have a nurse at night again. I had a lot of fun taking care of her last Saturday night when we didn't have a nurse as well. I kind of wish that I could have one of these days to take care of her every week. Here are a couple of pictures from the last week.