Settling In!

We are definitely enjoying being home! And Fiona is adjusting very well. Her heart rate is the lowest it has been in probably a month and I think it's because she is getting comfortable here and knows that someone is not going to wake her up and mess with her or poke her all the time! She is such a happy little thing! You would think that with all of her issues that she would be mad or cranky all the time, but she's not. She doesn't cry much. The only time she really gets mad is when she has gas or has to poop, poor thing. She has been having a hard time. We think it is because she is getting too much iron. Her multi vitamin and her formula have iron in them and that is probably too much for her.



We have been hearing LOTS of sounds from her lately. I think I might have explained this before, but she has such a big leak - air goes out around the trach and up through her vocals cords and back out her mouth. It happens alot when she is sleeping because her airway is much more relaxed and there is alot of room around it. We are thinking they are going to have to give her a bigger trach at our next appointment. Which kind of stinks because then we won't be able to hear as much. But it will be better for her.



We had our first appointment on Thursday with our pediatrition, Dr. Gorlowski. So Tom and I took her out for the first time. Thankfully it was nice out! We had some issues with the battery for the ventilator, but other than that everything went well! She now weighs 8 lbs 13 oz!



Her belly is looking great. There is only a small spot that is still granulation tissue, which has been like that forever!



We have lots of appointments coming up. She has to get her regular shots and her second RSV shot at Dr. Gorlowski's. Then we go to the Opthamologist on the 26th, Pulmonology, ENT and surgery on April 27th, Cardiology on May 11th, and Urology on May 26th!


She loves her swing! She fell asleep within 10 minutes! And she loves that monkey! We use it to hold up the vent tubes and then she plays with it and holds onto it!