Crazy times

Wow.  It has been a too long since I have been able to post an update on here.  The boys have had a pretty good week.  I will start with Max.  As I mentioned, he has serratia or pneumonia or some sort of infection that is causing him to be pretty sick.  He is still really puffy, and the doctors said that is a common reaction to being on the jet and being sick.  He had another short lived sting off the jet on Tuesday I believe, but he has been back on it since Wednesday.  He seems to finally be a little more stable in the last 24 hours or so than he has been for the last week.  Every time we would call to see how his blood gases looked, it seemed like they were either too good or terrible, so they were constantly making vent changes up and down, then the next gas would show that the changes were too much so they would turn him back up.  After a few days of the pendulum swinging too far in each direction, it feels like we have finally found a comfortable range for Maximus.  Right now he is at a pressure of 33 on the jet with a rate of 360 breaths per minute, and the conventional vent is giving him 6 breaths per minute.  Max has also gained a lot of weight in the last week...he tipped the scales at 4 pounds 4 ounces last night!!  That is too much weight gain, but the doctors believe it is just retained water from being sick and puffy.  He actually lost 30 grams last night (about 1 ounce) and that is a good indication that maybe he is starting to feel better.  His oxygen needs continue to be pretty low for him...in the 45-55% range depending on his mood.

The picture below shows Max in his favorite position...his belly.  I know that is a big "no-no" for infants, but these kids get whatever they want.  You can see he has an IV in his left arm and they strap a foam board to that arm so that Max doesn't bend it at all.  The IV is to deliver his antibiotics.  You can also see the size of the scar from his PDA ligation surgery...and that was when he weighed about 2 pounds!!

Wesley has had a good week.  No real changes for him.  Kate and I gave him a bath on Wednesday evening, and he seemed to like that okay.  This is not a bath in the traditional sense, but more of a sponge bath using wet cloths (sponges harbor bacteria you know) with a little soap to clean him up and rinse him off.  What he really seems to like is having his CPAP apparatus off his head.  He hates that thing!!  He did do one trial off the CPAP on Thursday morning and he did great.  The nurses told us they would start weening him off of it one hour at a time twice a day...but then the doctor put a stop to that saying his oxygen needs are to high.  He has been in the 40% range pretty consistently with a few days in the 30s and a few in the high 40s.  The doctor said he needs to be in the 20s before they start to ween him.  That was a bummer for us, because Wes does so great with that thing off his head...and we love to see his face!!  But we are most concerned about what is best for him long-term, not our own selfishness.  Wes has had some decent weight gain too...he is up to 3 pounds 14 ounces.  He had been "backed up" for a few days and we were getting a little concerned that something might be wrong with his digestive system. I think he had gone more than 3 days with out a stool...and then on Thursday night (a little present for his parent's 5-year wedding anniversary) he had a diaper that the nurse described as "spectacular in a bad way."  Atta Boy!! 

This is a picture from bath time on Wednesday.  As you can see, Wes does not know how to feel about this silver camera thing we stick in his face all the live long day.  I titled this portrait "Nude and Confused."