Day 71, Hailey's Birthday!!

Hailey turned 1 today!!! I will put the pictures in a 2nd post. She sounds a little more stuffy today but she enjoyed opening some presents and playing with her Birthday balloons. She is so cute. Someone from the hospital even came and played guitar for her.

Today is kind of an emotional roller coaster. The docs have decided not to use the gtube for another 6 weeks and they have decided to wait another 6 weeks to do the heart cath and surgery, which would put us in the first week of August for surgery. However, the reality is that those dates are already full so it will be more like September at the earliest before we get to heart surgery. It is so hard. I just want to cry. It is so hard to keep having the date moved around, especially as the surgery is our only way of ever getting back to any kind of normal. It feels like a marathon being dragged on and on with no end in sight. So, once again we will be going home on oxygen with an NJ tube. 

The silver lining is that I will get to go home between. I will be SO glad to be home, but it is hard to leave California again with nothing any better than it was before. 

The plan is to discharge us next Monday, see a cardiologist for a checkup Thursday and then go home. I am happy and sad. I keep thinking that we are almost there, that we just have to make it until this or that date and then it just keeps going. 

Please pray that things can work out when and how they are supposed to and that we can have the strength to endure until then. I know somehow things will work out because they always do!