Amirah Nation: Been to long.....

Can't believe its been a little over two weeks since we last update. Needless to say we've been very very busy.

So, since Amirah's been back at the NICU she's been doing AMAZING!!!

Let's see....she went back to NICU on Monday 8/13. By that Thursday she was all the way back down on her O2 needs so the team decided to switch her to volume settings on her vent. They did this because basically if she were to go back to Blythedale or come home she would need to be on volume ventilation as apposed to pressure settings. So they switched her over and she did great on it...no need to go back to pressure settings. She did so great they were able to wean her O2 all the way down to about 25-30%.

This week they started her on Trach Collar a few hours a day. She is doing sooooooo good on it. The plan right now is to try and have her on the Trach Collar during the day and back on the vent at night.

On Monday, after being back in the NICU for a week I asked the doctors what the plan was. And they all agreed that for what ever reason it appeared that Amirah didn't care for Blythedale and they thought we should try taking her home. We were ecstatic!!!!

So that day I started making a bunch of phone calls, and the hospital staff started making a bunch of phone calls all to the wheels in motion. At this point all we are waiting for is the nursing schedule to be covered and we can bring her home!!!! We have filled out a lot of paper work, made a lot of arrangements, done some very deep cleaning, moved furniture around all in anticipation of bringing Amirah home.

The other thing that has happened since Amirah has been back to NICU is that she has become a different baby. The baby that left NICU for Blythedale was barely holding her head up, didn't seem to enjoy her toys for a long time, and would occasionally smile. Since being back at NICU she is stronger and more engaged with the world around her. She will play with her toys for a really long time. She happily entertains her self with her toys. Smiles at almost everyone who comes to talk to her (and its a lot of people; family and hospital staff ).

We have also been getting more "freedom" in taking care of her while we are with her. Basically the staff lets us do all the work and they are there for back up and/or to answer questions or give helpful suggestions as needed. It has given me the confidence to really know that we will be able to take care of her when she comes home.

We will be getting 16 hours a day of in home nursing. I am both nervous and relieved that this is available to us. Relieved for the obvious reasons. It's a little scary and overwhelming to think of having Amirah home with all her medical needs. And a little nervous because it's hard to imagine having a stranger in our home every day for 16 hours. I know they will only be strangers in the beginning, and I am hoping Amirah will have a terrific nurses, but I guess the unknown part of it seems a little scary at the moment.

As Amirah's home coming day gets closer I have found myself in moments of feeling sorry for myself. Sorry about all the time we missed having her home. And have been remembering all the different things and feelings we went through in the almost 8 months since she was born. It's really hard to put the thoughts into words I guess. But I guess I feel the need to express this part of our journey too.

I guess I'm blabbing on at this point, so I guess I will wrap it up. Here are some great photo's of Amirah over the past few weeks....

Amirah concentrating on her toys....