We are on track - On the way home soon.

I still remember, before knowing that you have CCHS, before putting you on the ventilator, I hate walking into the NICU.  I still remember, everytime walking into the NICU, my heart will pound, especially when I hear the desat beep.  Most time, it is you that is desating and it makes me upset, the reason is because, each day as I walk in, I pray and hope that they will tell me that your baby seems to have grown out of the breathing issue (Yes... I was hoping) but of course after I found out that you have CCHS, I know that you will never grow out of this.

Also, with you being on the ventilator, I know that you won't have issues or even if you do, just occasionally you will desat, not like last time. 

You were more alert today because they have reduced the pain medication, so, we managed to snap some pics.  I am happy that even though I am still not too comfortable with the trach on you, but at least you seem very comfortable and it doesn't seem to bother you at all, well, maybe a little but unlike the mask, you just hated it.  I can see that you were looking into my eyes, begging me to take off the mask.

We got pictures taken... you look really comfortable and not fussy at all.

Here you are, taking pictures with mama, I like this picture better than the other even though I have no clue why Dada kept asking mama to go lower, clearly there are lots of space in the photo.  We all know he is not as good as mama in taking pictures because if you look at the picture of Dada and you versus mama and you, you know which one looks better and the one that is NOT in the picture has a better skill.

Now can you tell?

Poh poh, Gong Gong and Kau Foo came to see you today as well, while Yee Ko and Big Koko has to wait down there with you.

They were still trying to find your happy spot, best setting for the vent, so, they have been taking the blood gas every 8 hours.  So far, you seem to be doing great.

Here you go... sleeping peacefully with your ventilator.