Overall, she is doing very well. She has her own recliner in our family room, so she is always surrounded by a bunch of people. Everyone stops and talks to her as they go in and out. She tracks us very well with her eyes, which is a good sign. She sleeps well most of the night.
It has been interesting learning to take care of a medically fragile child. It was nice when trained nurses did all the work of administering medicines, setting up feedings and doing breathing treatments. To someone without any medical training, it is a little daunting. On top of that, Scott had to go out of town for several days just after she got home, so I had to be very responsible, and I don't always like that :)
It has now become fairly simple to do everything, but we have had one problem and it is serious. Anna has a g-j tube. This tube goes directly into her stomach. She receives her medicine through the g-tube. The j part of the tube goes into her intestine and she is fed her formula through that. This is to help prevent reflux and aspiration. The j-tube is very tiny. It clogged a week after she came home and then shifted back into her stomach so we had to get it replaced. The new one shifted two days later, was repositioned and then shifted again. This is a serious problem because every time it shifted, she would wake up in the morning vomiting. Also, to get it replaced or repositioned, we have to drive back to the hospital in Atlanta, which is almost two hours away and it is has to be replaced by using an x-ray machine and she is getting way too much radiation. Yesterday, they could not get the j-tube back into her intestine, so she is currently being fed through her g-tube. So far so good, but this may not be a permanent solution. We have an appointment with her GI doc tomorrow, and would appreciate prayers as we figure out what is best.
So bored waiting to have her j-tube replaced again, she fell asleep
I was disappointed about having to take her back to Atlanta yesterday as well because she was supposed to be evaluated for therapy. She has not had anything but what Scott and I can do since she left CHOA and I don't want her to lose all the progress she was making! Hopefully we can get it rescheduled soon.
She is just the happiest little thing and is all smiles and coos unless she is in pain or extremely tired. She puts me to shame. She seems to be enjoying her new family and absolutely loves her new crib. She smiles hugely when we put her in it at night. She loves her recliner too. I'm afraid she is getting lazy :)
As for me, this has been a rough two weeks. Change, even good change, is tough. We have all had to adjust to a new normal. My flesh has been rebellious, not always wanting to drive to Atlanta when necessary or get up at 2 am to administer medicines. God has been exceedingly patient as he has worked at cutting away the dead parts of me and infuse me with his life and love. I have alternated between stark terror and soaring love. I am so far out of my comfort zone here that I feel like I have moved to a new zip code. I have climbed out of the boat and am walking on water. I wish I could say that I am keeping my eyes firmly fixed on Jesus, but I hate to lie. I look at the waves a bit too often.
My coworkers at LaGrange College have been incredible! I can't remember the last time I made dinner. They have surrounded us with love and I am forever grateful.
So, in a nutshell, I'd say Anna has fit right in. Everyone adores her and she is basking in the attention. She has gained 7 pounds since we arrived from Bulgaria. God told me clearly yesterday that he knows exactly what will happen with her feedings, and that it is ok that I have no clue. I am trying to trust in that.
Celebrating her first Father's Day with a father