The verdict is in. Our request for a night nurse was denied by the insurance company. Shawn, who is exhausted as well and has to go to work each day feeling tired, is not giving up. He called the insurance company today to find out why and what to do next. They are going to reassess our case, which means we need the masses to pray for a miracle. PLEASE pray that they missed some crucial information that will change their minds. This would be the difference between existing and living for us. We've had so many problems with the feeding tube, and we really need a nurse to help us in the home and find a solution.
Hope reached 8 pounds today! She is now 9 weeks old and is starting to grow a bit bigger. The doctors are hoping she will reach 10 pounds by 4 months old, and be at a safer weight for her surgery. We're headed in the right direction, as she appears to be tolerating her feeds very well. Sadly, she is still not taking much orally and is a long way away from having her tube removed. I like accessories, but the tube is not fashionable or fun :).
I'm finding it really hard to get things done when I'm alone with the kids. If I'm focused on Hope, Sadie is always up to no good and nothing but trouble. If I focus on Sadie, I get behind on prepping feeds, cleaning bottles, drawing meds and other important parts of Hope's care. I count down the minutes before Shawn gets home from work. I feel like it's almost impossible to care for Hope and Sadie without an extra set of hands. The evenings are a lot easier, until the night time feeds begin and the lack of sleep catches up with me again.
I am bursting with love for my girls though, and I can't help but look at them and feel so blessed. These girls are such a joy in our life. Hope is a lot of work and she sure sucks me dry, but I wouldn't trade her for anything and she is worth every bit. Sadie makes me laugh when I don't have the energy to carry on. It reminds me that kids grow up so quickly and it won't be long before Hope will be finished all her surgeries and our life will be more normal once again. Until then, it's one day at a time. Please pray we can get the help we need - I don't know why they make it so difficult.