A bit disappointed...

(this ended up being more a mish mash of my thoughts...read on if you like being confused;-)

Well, the transfer didn't go through today. There were no beds here in our area, so we stay another day and wait to hear about an opening. However, we had asked our nurse today about the possibility of Faith coming straight home instead, just in case a bed didn't come open by the end of the week.

The nurse was awesome and basically started the wheels spinning for Faith to be discharged. It is not happening yet, but it is in motion...Now, if Faith can just start putting on some weight...I know "lose weight, now gain weight..." what a life...just can't please everyone!!

When they see her start gaining weight, then we can look at bringing her home...possibly by the weekend...depending on her and how quickly she cooperates;-)

They are now getting in touch with our local services and starting to get things set up for us here. She will need some special medical equipment, like a feeding pump and the bags and tubes for that. Also all the home care people that she will have too. Once those are also in place, then we are a step further too.

We also will need to stay one night in the parent care room to make sure we are comfortable with handling the feeds and her for the night and part of the day, then she will have to pass the car seat test (sitting in the seat for a half hour without setting off her bells...)...then she can come home, instead of the other hospital. So, this is where we are now, it feels nice to know that we are in the home stretch of this little ordeal, and that life can get to our new normal soon.

Part of our new normal is going to be making sure we pick the right clothes for her. We brought some undershirts and sleepers in for Faith this weekend, because it was hard to come by her size there. Small things that you don't think of with other kids is that because of the feeding tube, we need to have clothing that is accesible for feeds...buttons in the front...this is something that we took for granted with the other kids...they could wear anything...

Also, another new normal we are going to have is continuing to teach her to suck and drink from a bottle. This is something else we took for granted with the other kids...it was just 'normal' for them to drink a bottle or nurse, immediately...today was good for Faith though, she drank 2 mL from a bottle...had a bit of a surprise when the milk went in her mouth, but slowly got the idea...this is going to take a lot of work to teach but will be worth the effort...just another part of our new routine.

You know, I think that through all of this, another huge lesson that we have learned is that we take a lot of things for granted. We have so many different things to learn and do with Faith. We are always learning, and that is a good thing. People have made comments like "We don't think we could handle that situation" or "you already have 4 kids, how are you going to manage?" This is where we have learned that taking things one day at a time, rejoicing and thanking God for the baby steps we see in her, being positive and being real at the same time, leaning on each other and knowing that we have a phenomenal amount of support in our end, all these things are so important. We couldn't have made it this far without one of these in our lives...

I am going to write out, when I find some more time, the story from the beginning. I started somewhere in the middle with the blogging, but we have gone through quite a large process. It has been a process of grieving and trusting each other, nights of tears and nights of silence, times of anger and frustration and those are still there sometimes...they are the real part...but we have grown so much more to the thankfulness, enjoying the times that we spend with her in her little corner of the NICU, seeing the positive and knowing that we have somehow impacted some of the nurses and medical staff in one way or another...

Our new phrase in the nursery is Faith is going to change with leaps and bounds...by baby steps...