Home Tomorrow!!

Hi all,
Ellie did well throughout the weekend and all signs point toward going home tomorrow. She maintained 30 ml feeds all weekend and then we made them 24 calorie today and she's had no problems! They have even taken all her monitor leads off tonight and the only tube on her is her j-tube. We have continued working on oral feeds too, but she is not too interested in them. She eats some and then decides to blow bubbles. I think some is getting down but most is not. Hopefully this will improve when we get home. Starting around Thursday or Friday she started smiling and babbling again and yesterday she started laughing. It is so good to see her happy...Dave and the girls were sure glad to see her happy this weekend.

We will have lots of work to do when we go home. She had made some really good progress after her gastric pull-up surgery in September. She was eating 1/4 of a cup of food 3 x a day, rolling over, pulling her feet up toward her hands and mouth, playing well on her tummy and starting to babble---she was saying dadada, yayaya, wawawa, nanana and had just said mamama before the j-tube surgery. The babbling is starting to come back--nanana and mamama and she's using her hands well again. She is even shaking her head no at me when she done eating and was banging mallets togther during her music therapy session today (these are new things). She also loves making fish faces and kissy noises at all the nurses.

Physical Therapy (PT) came by today and worked with her. She does not like being touched a whole lot as it is now but she was really ticked off by the end of the session. She doesn't like laying on her tummy and won't push up with her arms, doesn't want to move/roll toward a toy (though she does manage to move back onto her back) and keeps her legs in a frog like position when she's laying on her back (this is bad on her hips). PT wants us to continue to get some help at home. These are just setbacks we will have to work through. Of course, when you consider she's had 7 surgeries in the last year, all in the chest/abdominal area and a life threatening infection...she's doing pretty well. Our wound care nurse says they call her their little miracle. I still have a hard time thinking about that night when we brought her home and morning when we brought her into the ER. When I do, I have to get up and look at her and see that she really is okay now.

So...Ellie and I are really looking forward to getting home with Dave and the girls. We've missed them bunches. I can't promise pics anytime soon (dial-up internet at home) but we'll see what we can do. I'll try to update whenever we get home. Thank you all for sticking with us. I believe your support, thoughts and prayers have all been instrumental in helping us get through this difficult time.