I have been extremely poor with my updating lately. I'm exhausted. I find myself sleeping poorly, eating terribly and not being able to keep up with cleaning, grocery shopping or other necessary tasks. I'm not exactly sure why everything has become overwhelming and poorly cared for. I'm happy, I don't feel sad or upset about life. Having Hope out on passes is fantastic, although it can be a great deal of work. Perhaps knowing that I need to pack up our entire house and move in 3 weeks is making me less motivated to clean. I'm not sure, but I need to get out of this funk before I get really behind. Sadie had to go to bed for the first time in her life without milk, I forgot to get it.
Hope's party was fantastic and we were thrilled that our guests donated over $1,000 to Heart Beats! An amazing organization that practically helps families with children that have CHD's. The remnants of the party lay around my house in piles and I lack the motivation to put them away. I keep telling myself I'll do it tomorrow, but that has come and gone.
Today at the hospital the doctors let me know that Hope could go on passes regularly until we get her calorie count up, her fluids balanced and her electrolytes stable. This could take some time and they want us to have some freedom as we work through it all. There is talk of an overnight pass this week as well. It's exciting to be so close to coming home with Hope, but also makes patience more difficult.
Sadie was up all through the night last night and after running a fever at her grandparents house today, I took her to the doctor on my way home from the hospital. She has a bladder infection and has been started on antibiotics. She's already been up once tonight as her fever is still lingering. Thankfully she's not contagious to Hope, a bladder infection is much better than strep throat in this house! I'm hoping Sadie will feel better after 24 hours on the antibiotic so she'll be less clingy and stop having accidents. She peed her bed for 3 of the last 4 nights. I would put her to bed in a pull up, but we ran out and I forget to get more every time I end up in a store. I've lost a bit of my touch...I need to get it back!
Hope smiled once for me today, something she has been avoiding for a while. It was great to see her happy, even briefly. She's quite content and relaxed, but not truly happy very often. I wonder if the potassium is making her feel a bit yucky and taking away the desire to smile. It's so refreshing when she smiles and reminds me that she's got a little personality in there. We're hoping to start back with physio this week.
Hope has been started on puree bacon. It's pretty gross looking. Please pray that she will begin eating it to give her more calories. Who doesn't like bacon? We also started concentrating Hope's feeds this afternoon. Please pray that she tolerates the Similac being added to her feeds for extra calories. This is what we previously added to her feeds successfully when she was much younger. If this works, we are even closer to home.
Thank you for continuing to pray for our family. Please pray that Hope would come home soon and that our family would find our groove as we have her home more regularly on passes. We absolutely hate bringing her back to the hospital, it gets more difficult each time. Please pray for Sadie as she starts the adjustment of having her sister home more often, she's acting out more through this process. Please also pray that I could get the rest I need. I went to bed absolutely exhausted and could not fall asleep. I'm in desperate need of a good rest and fear I'm going to get sick if I don't catch up on my sleep soon. Would you also pray that I get my groove back? I want my house to be organized again. I need the motivation to pack and the memory to get groceries for my family and to cook too!