Heart Wrenching

How do you explain to your 3 year old that you don't get to "quit" being sick? That her health problems will be with her for the rest of her life? I had to put a new feeding tube down last night. Combine that with her aversion to eating these days (it hurts and so she doesn't like to eat any more-- so odd for Hallie), it made for a hard night as I was trying to get her to eat her dinner. She sobbed all the way through prayer before dinner. She cried all the way through dinner. She told Derrick that we don't love her because we do mean things to her, so she doesn't want to live with us anymore. She wants to live with Grammy and Pop or with Grandma and Grandpa-- anyone that won't make her do all of these mean things.

It was such a hard night for me. I have come to the realization the last week or so that she is missing enough of her intestines that she is not going to be able to absorb enough nutrients on her own. This is really going to be a lifelong thing. I am always going to have to supplement her eating at night with her feeding tube. I have spoken with her GI doc and the surgeon here in Reno to start the process to get a permanent G-tube put directly into her stomach. Of course, if she miraculously has this amazing recovery, they can remove it and sew the hole up, but for the most part, it will be a permanent thing. It will be a lot easier than her feeding tube down her nose. I won't have to change it once a week. I won't have to pull a layer of skin off of her cheeks when I take the tape off. It will prevent people from staring at her in the store or the park, or wherever we might be, asking what is wrong and what the tube is for. In short, it will give her a more normal life and hopefully, help pave the way for when she can go to school in a few years.

But it has still been a bitter pill to swallow. I think I had naively hoped that she would bounce back like her previous 3 intestinal surgeries and if you gave her enough time, she would be able to adjust and return to a normal child. To accept that my little girl will always have to have help has been hard. Will she ever be able to have sleep overs with her friends? Or will her friends always have to come to our house so that she can be hooked up at night? She loses weight every time I don't hook her up at night. Hopefully, we will be able to adjust a little better so that she can still afford a night at a friend or cousin's house (hint hint Cody and Heather-- she is already talking about how you told her she could have a sleep over in July!). It's been hard to watch her as we have walked different places and done different things to see how weak she is. She wants to be carried all of the time. I have to bribe her to walk to the next street and then she could be carried a little while. My brother Cody and his wife Heather came to visit us over the weekend (more to be posted about that later) and they were really good to help out with her, but now that it is just me with her and Tucker during the day, we are going to have to make some adjustments. We got rid of our stroller that both Hallie and Tucker fit in because she wanted to walk everywhere. Now, not only does she not want to walk everywhere, but I don't want her burning that many calories on our longer walking days. So I am having to get another stroller that I can put both kids in. It has just been a few weeks of painful realizations and acceptance and the way things are going to be for the next while. Then for her to tell us that she quit, she was done, and didn't want to do this anymore, just touched a very sensitive nerve because I was kind of thinking the same thing!

The good news in all of this is that I have found a great pediatric GI doc here in Reno that Hallie and I both love. He is very cute with her and makes her laugh a lot. And he is very thorough and listens to me, which I LOVE. I am very confident that he is putting Hallie's best interest in front and that he will help me make the best decisions for her. Thank you all for your love and support as we continue on this roller coaster. It means more to me than I can ever express! We will get through all of this because of people like you.