Yes we are home...

I guess I thought I posted that we were released. She came home mid-week and we are so happy to be home. She has slept well in her own bed. You can just tell she is so comfortable in her own place.
Annabel is still needing prayers. She is still very weak and we knew this recovery wouldn't be quick. She continues to run fevers everyday. They stay mostly 100.5- 100.9. The reason is unknown, but before being discharged they ran blood cultures and it was no growth.
We are doing some feeds but her formula runs straight through her and looks like she isn't absorbing. She is still having to be weaned off the medicine. She is taking Ativan and she seems so sad at times during the day. This is very unlike Annabel. Her voice is beginning to come back but sounds like a tiny kitten. They weaning will be discontinues on October 10th and I cannot wait. Her breathing pattern are still different where it looks like she is uncomfortable with her breathing.
We will be seeing her GI doctor Tuesday and hoping for more answers as to the fevers. These fevers were happening prior to her going into the hospital for a couple months.
I will post later on this subject, it isn't pleasant to speak about. But is very obvious that Annabel has stool coming from her from opening. I have asked doctors to look into this and was told this was very unlikely but it is happening so often. If this is an actual problem Annabel will always be infected. This could be an explaination for the continued UTI's.

Happy 30th Birthday, Derek!

Tonight we celebrated Derek's 30th birthday! I can't believe he is 30 years old. I wanted to post a few pictures when he was a baby. What a cutie and now all grown up and a husband...God is good!

I am thankful for his mommy-in-law Cindy and David,who celebrated with a home-cooked dinner and homemade red-velvet cake for his actual birthday. His birthday was September 14th and that was the day that we called the family to the hospital after being told Annabel probably wouldn't make it. My brother also drove in from Dallas and took my family (not me) to eat a nice dinner in celebration of his 30th. All of the kids were there, his meemaw, and aunt Lera. His cousins,Shauna and James. Thank you Uncle Carl!

Fingers crossed...

Today began with Bella waking at 3a.m. And not going to sleep until 1:30 p.m. She also had a fever of 100.8 which isn't a big deal unless you live in a world of central lines. She is also not doing great with the withdrawals of the drugs for last two weeks. So when the doctors made rounds I asked why were we staying in hospital and he answered to get her feeding again and to wean the Ativan. I had already decided if this is all that was keeping us here I was going to asked to be discharged. I explained to him that we had more experience with getting Bella to eat, so we had that covered. He couldn't tell me how long the Ativan will take but that I couldn't just opt out of giving her this. It is being given into her g-tube every 6hours and I am left in the room with all her sadness. She can shift from pure joy to complete sadness and can't stop moving her legs. So I said give me the weaning regime and I and my great nurses can handle this and at home we can provide many good distractions as not to depend on this medication longer than necessary. The only hold out was the low grade fever. He wanted to draw blood cultures and have us stay til results were in which takes 48hours. I agreed to stay 24 hours until preliminary results are in and I agreed if anything grew after that I would come back and readmit. Annabel has always grown something in the preliminary cultures. Of course, if she gets worse we would not want to be discharged. There are so many factors that play into Annabel eating again the amounts that she was eating when admitted. They are going to watch her dilated bowel loops as we all agreed these were probably present before Bella became I'll this go round.
When I get home I tend not to post as much. If she continues to improve then there isn't as much to report.
I want to take this time to say how much I appreciate all of your prayers. These words are not sufficient and do not begin to express my gratitude. Annabel's life has taught me so very much and she has showed me so many wonderful people who pray so faithfully for her. It is very hard to admit that at times I was just to tired, to hurt or whatever to pray. But knowing how many continued to pray for her, let me know she was covered, wrapped up and held so tight in our Mighty Gods hands...thank you, thank you

Just hanging out...

Not much really happened this weekend. It was spent letting her rest, wean off the medication from being on the vent. They are using Ativsn and I am hoping that they will discontinue this also. Today I placed her in the wheelchair for a walk and when done she was exhausted and slept 3 1/2hours. Tonight they will begin feeds at 10ml. per hour through the night. There is also some concern about the large dilated bowel loops. They will need to have TPN regime decided with nutrition so I would love to go home soon. We will see. Thank you for continued prayers and your comments via email, text messages, comments on blog and Facebook. I have posted picture on Facebook with my phone but I have not figured out how to transfer them to blog.