The Full Picture

     Have you ever gone late to a movie?  It's one of my utmost, personal pet peeves.  Even if in reality I am only three seconds late walking into the theater I feel cheated, as though I missed something.  Even if the movie turns out great and everything makes sense to me, I can never shake the feeling that I missed something in those seconds/minutes that I wasn't there.  On a much larger scale this is how I and I'm sure Tracy, although I know she isn't quite as bothered being a minute late to a movie as I am, have felt this last five weeks.  We have enjoyed every minute with our beautiful son but longed to see what we were missing out on underneath the teratoma.
       As I'm sure most have read on facebook or through an email, Jude's surgery was successful.  Despite the failure yesterday, the bleeding was minimal and the tumor was successfully removed.  We are now able to see all of Jude's handsome face.  He looks like a completely different baby (due in part also to the swelling from surgery and because of his mal-formed jaw-line).  Tracy and I were here bright and early this morning with Jude beforehand getting our time with him should anything unexpected happen.  Then around nine o'clock, he was wheeled down to surgery by the ENT team.  After about an hour of prep, the surgery was underway at about ten o'clock.  Tracy and I waited in the Ronald McDonald Family Room, a home-away-from-home designed living room/kitchen for families with children in the hospital.  As the hours passed we received periodic phone calls letting us know that surgery was still taking place and so far Jude was all right.  At around two o'clock, we were surprised when the ENT and Plastic Surgeon came into the family room.  They escorted us to a private room to discuss the surgery.  They told us that the surgery was successful and that they had removed the tumor with little bleeding.  Tracy and I were both relieved and filled with joy to hear the news.  The doctor then told us that the tumor was actually coming from a different spot then they had originally thought.  He went on to explain that the tumor did not start from the pallet of the mouth but from the Sphenoid bone (click word to go to image) and that the tumor had deformed the bone significantly due to it's attachment.  There will be a need for further surgery to repair the bone.  Speech will ultimately be the highest risk to be affected by this factor, however, other areas of difficulty for Jude remain to be seen.  The other possibilities include breathing normally, swallowing, and eating/drinking.  The ENT also explained to us that during the laryngectomy, a procedure in which they use a scope to look down his throat, they had seen his voice-box and vocal chords.  These were described to us as small and underdeveloped.  He did not know and could not know at this time if Jude will have any permanent damage or difficulty with creating sound.  The entire conversation was about three minutes long but packed with a lot of information.
     So, for now we are just excited to see Jude's entire face.  He is going to have a lot more surgeries and procedures to correct all the complications the tumor has caused.  He will be fitted for a brace that will hopefully fix his jaw-line, which is descended.  The brace is a sling that fits around the top of his head and jaw that is anchored to a chest strap.  The sling is adjusted every couple of days to hold his mouth shut and therefore re-form his jaw-line.  He is expected to wear the sling for one to four weeks.  We have been informed that baby's bones are much more malleable than adults and he is on a morphine drip to manage his pain.  We have seen pictures of before and after babies who have had the sling and it is amazing how perfectly normal they look when it is complete.  The plastic surgeon did mention that if the sling should fail to work they would need to perform jaw surgery to help align his jaw line.  The surgeon did not expect this to be the case but threw it out there as a possibility.  Either way, Jude looks so much better than he did with the tumor.  He basically looks like he's surprised at all times with his mouth wide-open.  Tracy and I are so grateful for all the prayers (especially those who took part in the prayer-chain in KC, Boise, Spokane, and Seattle) and for all the support we have gotten from everyone.  We have know all along and now have seen the amazing power of God's work.  Jude has a long, long road ahead of him but today will go down as a victory.  One of the best moments of my life took place only minutes ago when I was able to hold my son's hand, look down at his mouth, which almost looked like a smile as he looked back at me.

To God be the Glory,

Chris