One Month

 There are times when I am sitting with Kai while he is sleeping, and it is hard to remember that he has all the problems--all I see is this tiny little person sleeping so peacefully.  I forget about all my worries and fears for the future and how I am going to be able to take care of him and just enjoy.  The miracle that is life and love overwhelms me.  I know that we have a rough road ahead of us and it has just begun, but it is nice to sit back and watch Kai just be a baby.  He has a very sweet spirit about him--all who have spent time with him have commented on it, even the nurses, and he loves to be held.  He is also very calm (unless we are bugging him with all the cares that we need to do with the tubes and monitors and diapers--he doesn't like his diaper to be changed, but he also doesn't like to be dirty).

Today marks his one month birthday.  It seems silly to keep track of his life in days and months, but the reality is, we don't know how long he will be with us.  We never truly know with anyone, but in Kai's case his time with us is even more limited.  It is almost a surety that J and I will outlive him; which is painful for us to know, so we treasure each day a little more. 

We are getting more competent in taking care of him.  While we spend a limited time at the hospital, when we are there we are taking over more and more of his care.  We are changing the dressing for his gastronomy tube and helping out with the tracheostomy care.  By the time Kai leaves the hospital, we will be doing all the care for him.  

 

Kai is spending more time awake and acting much more like a baby.  It is fun to watch him looking around and grabbing at the tubes (even though we don't like him grabbing the tubes).  He is almost five pounds now.  The doctors had started to supplement my breastmilk with some formula for extra protein and calories to help boost him up, but he started spitting up a lot and getting really fussy, so they now have him purely on my breastmilk again.  They are also giving him some vitamins to help, which he is somewhat tolerating.

We also have had a little success in getting him to suck on the binky.  We are very excited about that because it helps develop his sucking reflex, cancel out the oral aversion that he has developed with all the tubes in his mouth, and is one step closer to getting the g-tube out and having him eat via mouth.  He has taken about eight to nine sucks on the pacifier a couple times in a row which is really great.  We also want to get him sucking on the pacifier while being fed so he gets the connection between sucking and eating.

It is encouraging to see the progress he is making, and we hope he will continue to make progress so we can bring him home!