August 18 10:30 pm
So the boys had their 8 week birthday today or 34 1/2 weeks in gestation age. In adjusted age they are negative 5 1/2 weeks old. The more we find out the more we come to understand that an adjusted age is important to keep in mind. For instance, on December 23rd they will be six months old.....however, you can't expect them to be behaving as a six month old would....they won't have developed to the point of six month old babies since their adjusted age will only be about three months.....so what's this all mean.....who the hell knows.....all I know is that both boys had a rough day. Over a week ago they adopted a long term strategy for Parker that was based around very small incremental adjustments.....this would allow him to grow and adapt at a slow productive level.....I was really supportive of this strategy and it seemed to be working for a little while.....not so much anymore.....or maybe it still is.....who the hell knows......all I know is that Parker had some serious desats today.....desats into the 30's with his oxygen requirement still hovering around 50%. This long term strategy and the patience we employed was supposed to be paying off some pretty good dividends by now......I'm not so sure......but then again I'm not so sure that the next step is any better.......you see the next step after getting extabated (the breathing tube being taken out of his throat) is for him to go onto CPAP......this would be the same CPAP that is giving Tyler fits. Ty has been really struggling with his CPAP for several days.....today we found some insight into why. Without too much technical explanation ( it's impossible to explain without seeing the device) the bottom line is that the specific device they are using has been damaging his poor little nose....or is it just really irritated....the words damaged septum have been used......is it temporary ouchies or is it permanent damage......who the hell knows......all I know is that his nose is raw, red and swollen. Today they changed out the current device and tried a brand new one......one that didn't require an additional device that was helping to irritate/damage his nose. This new device is the one we had heard of but never seen. You see the one they have been using is relatively new....and by relatively new I mean that ALL of the nurses are trying to get used to it and NONE of them have had positive things to say about it. So this brand new one is apparently the only one in use in the NICU right now and it's on Tyler. Heather dealt with it and said that it shows real promise, but that it didn't fit Tyler properly and therefore didn't work properly unless she physically held it in place. Of course this means that, when not being personally held in place, it is losing its efficiency......that translates into the need to increase his O2 requirement to compensate for its inefficiency....which then makes it appear that he is needing more O2 than he actually does.....which of course delays the decision to get him off of the damn thing sooner.......is this an accurate description of the situation or just an overly protective father's perception.....who the hell knows.....all I know is that my son continues to be miserable......and this is the situation we are hoping Parker graduates to once extabated......are we having fun yet????
Perspective: I think it's time for some......Tyler broke the four pound mark today!!!! He just tipped over the scale of four pounds. His overall appearance is beginning to take on that of being a little chubby in places. Parker actually has himself a little double chin.....a far cry from the 1 pound 6 ounce wrinkly little guy that graced us with his presence eight weeks ago:):) Other than Parker's hernia we have still been able to avoid any major surgical needs so far ( knock on wood). Both boys have come a long way and are hopefully on the right track to becoming the Thompson twin terrors that will be attacking me on the living room floor in epic wrestling matches in the future. I'm squinting my eyes.......I'm looking hard......continuing to focus on that glass to see that it is half full......if anybody takes a drink to tip it into the half empty state I'm gonna punch you in the eye!!!!