New Years Day

     This is the hardest blog I've had to write so far.  Today was a tough day for the Schinzel family.  it started last night as we rung in the New Year with our son.  His blood gases were not very good last night.  They weren't terrible, they just weren't as good.  This obviously left us feeling a bit worried as we went off to bed, leaving him in the nursery.
     This morning, I went down to check on him and got a relatively good report.  The nurse said that his most recent blood gas test was the best that he had ever had.  I then met with his doctor who said all seemed well with two exceptions.  One, his billirubin levels (Jaundice) were up so they were switching him from a spot lot to a bed light (It looks somewhat more like a tanning bed hanging over his incubator rather than a reading light).  He did not seemed too concerned about this but said it seemed to be creeping up so they wanted a bigger light.  The other exception was that Jude's blood level seemed to be dropping.  The doctor thought this was the result of a bleed.  There were, he said, three main places blood could be hiding: The head, the taratoma (mass), and the stomach.  They had conducted an ultra-sound on his head and were awaiting results.  As I left the NICU, I didn't feel all that worried.  Tracy went down a little later in the day and spoke with the nurse who said that they had gotten the results back but she was not allowed to discuss them with us because she didn't have permission.  THIS left me feeling insecure and scared.  Tracy explained that the nurses were not allowed to disclose test results because they were not the doctors so whether it was good or bad, it didn't matter cause she couldn't tell us anyway without the doctor.  We both hoped for the best and waited to meet with the doctor.
     A little later in the afternoon we met with the doctor.  He informed us that they had discovered that the bleed was in the head.  The bleeding was taking place in the ventricles of Jude's brain.  He went on to explain the different "grades" of bleeds or Interventricular Hemorrhage (IHV).  There are 4 grades of bleeds or IHV.  Grades 1 and 2 are typically not considered dangerous necessarily and usually leave no lasting effects.  Grades 3 and 4 are more severe bleeds and can leave lasting effects on a child.  Jude has Grade 3-4 bleeds in both sides of his brain.  He went on to explain that possible long-term effects of Grade 3/4 IHV's are developmental delays, often times Cerebral Palsy.  He did not have statistics but said that off the top of his head he felt that out of 10 children with Grade 3/4 bleeds, 4 or 5 would develop Cerebral Palsy. 
     One of the most difficult parts, as if what we'd heard wasn't enough, was that we would not know for some time if Jude had any long-term damage.  In some cases, depending on their severity, the delays begin showing up around 18 months.  In some cases, however, delays will not be present till 5 or 6 years old.  Emotionally, Tracy and I are not sure what is worse at this moment: learning Jude might develop Cerebral Palsy or finding out that just have more questions that must wait to be answered.  Above all this, Tracy and I both struggle with feeling as though Jude just can't catch a break.  While we are eternally grateful that Jude survived the birth process prematurely we struggle with feeling frustrated that his list of battles just continues to grow.  I did not think that the feeling of helplessness and humility I felt during Jude's birth would or could be topped.  However, now that I have held my son's hand, brushed his hair with my fingers, and seen his eyes look up at me I know now that those feelings before are dwarfed by what I now feel and what I fear I might feel in the future.
     My heart for my wife extends beyond my own feelings.  She has endured one of the most difficult pregnancies both emotionally and physically.  Most women would struggle twice as much with half as much.  I can't help but feel cheated for her.  You would think that having a tough pregnancy would be enough, that it would be enough suffering.  But the hardships that have faced both she and Jude for the last four months are insurmountable when compared to my own emotional stress.
     For now, all Tracy and I can do is pray.  Really, that is all anyone can do.  Jude is fighting hard and despite all this is making progress in other areas.  As I said before, I am humbled by my inability to affect any physical change in my son's life.  God is in control of the situation and is the only one who can guide Jude safely through all of this.  Thank you for all the support through emails, comments, and text messages.  Please continue to pray for Jude throughout all of this.