Not Coming Home Just Yet

 When can Kai go home?  That is the most frequently asked question.  The answer is that we don't know.  It could be two weeks or two months.  Right now Kai is far from being "medically stable" as the doctors and nurses term it.  He still needs a lot of additional care that we wouldn't be able to provide at this time.

Basically, three major things (and several smaller ones) have to happen before we can bring him home.  Either he needs to breathe on his own, or he has to double in size so he can come home on the ventilator.  Right now he is breathing room air but he is on a respirator which is helping him take breaths.  He is currently on ten breaths a minute--which means the machine is helping him out with an additional ten "breaths" every minute.  We have tried several times to get him off the respirator and breathing on his own, and he does well for a little while, but after a few hours he just gets too tired and starts to struggle.  In order to bring him home on a ventilator, he has to double in size because the home ventilators aren't made for really small infants.

The third thing that would have to happen is that we take the tracheostomy class and learn to care for his trach to the extent that we perform all his trach care while he is in the hospital, even to the extent of rooming in for 24 hours to make sure that we have no questions and are completely competent.  They won't even let us take the class until there is a discharge date set, or he seems much closer to leaving.  I have met mothers whose babies have been in the NICU at Primary Childrens for more than four months and they are still there.  While we certainly hope that it will not take that long for Kai, it is going to be quite some time before he is able to come home to us, but, as the nurses like to say, it is up to Kai how long he stays.

He has been gaining weight like a champ, even with the two surgeries he had last week.  He is now back up to full feedings and they have taken the IV out.  He was up to 4 lbs 11 ounces, however, yesterday he dropped several ounces and is now only 4 lbs 6 ounces.  He has grown five inches since birth, and is now just over 22 inches long; so even though he is gaining, it just all just seems to go to his length.  He is oh-so tiny.  Pictures really do make him appear a whole lot bigger.  I have included a shot of J holding him from today and it gives a bit of perspective.