Tuesday, January 28, 2014


Im not sure i can even right this blog tonight and to be completely honest, i just want to curl up in a ball and cry myself to sleep.

Capris surgeon came in tonight to talk about putting in a trach.  A trach is where they will surgically open her neck and place a tube down her throat.  She will breathe out of that instead of her mouth and nose.  He told me that this was something that was most likely going to happen and that i needed to be prepared.  I tried so hard to choke back the tears but was unsuccessful.  He told me it was going to be okay and that it would just be temporary, hopefully only a few months.  He could see how distraught i was so he said we would give her a few more days and that maybe she would surprise us and her lungs would open up on their own and she would be okay.

Honestly I don't know a lot about trachs.  My first reaction was a very superficial one.  I don't want her to look like that.  I don't want her to have a tube sticking out of her throat i want her to be normal, its not fair! People are going to stare.  I know that this is so silly and the most important thing is that she is going to be okay but she's been through so much. why do we have to put her through this too?

Then i got back to the hotel and started doing research... I cant do this.  This is to much for me.. i am not strong enough for this.  Most babies cant make noise (except for occasional squeaks).  That baby cry in the middle of the night that most moms dread.. i want it so bad.  I want to hear her cry.  I haven't heard her cry in almost a month, now you are telling me she will be almost one before i get to hear it again??  When i give her a bath if i get water in the tube i could drown her.  When I feed her if i don't hold her the right way she could aspirate.  I already have to deal with the fact that SVT can compromise her breathing and be life threatening, now you are telling me that our everyday activities are life and death if i don't do it right?

I cant stop crying.  Im telling myself that its going to be okay and we are going to figure it out but the tears just keep coming.  I am all alone out here.  I have to be strong and be their for Capri.  I need to talk to A and B and not let them know that anything is wrong.  i need to be strong for mike so he can concentrate on work.  Why wont these tears stop? I cant breathe, i am making myself sick.  I need to sleep.  Tomorrow will be a better day.  Her lungs are going to open up and all of this fear of a trach will melt away.  Please let this be a bad dream.  Open those lungs baby girl, please...