The judge roy scream

Yes, this is an odd name for a blog post.  But if you’re from the Dallas area and have ever been to Six Flags, you know this is the name of the oldest roller coaster in the park (maybe even the oldest in Texas…not sure).  Why would i choose this for my post you might ask?  Because I sooo wish the roller coaster ride I am on was named Judge Roy Scream.  I wish I could go back to my high school and junior high days and ride roller coasters for entertainment purposes as opposed to the emotional torture my current ride is providing.  Okay I’m done with my ranting I promise!!!  We were warned numerous times about this ride we’re on, but nothing truly prepares you!

Mr. Kaden is doing well.  As of today he is on full feeds.  Right now this means he is up to 22 cc’s every 3 hours.  Full feeds means he is eating a certain percentage ( I knew this percentage this morning but cannot for the life of me remember it at this moment) of his weight.  So as he grows his feeds will continue to increase.  Right now he weights 2 lbs and 11 oz….I suppose I could do the math and figure out the percentage based on his weight and 22 cc’s….but I’m not going to :)  He is still receiving his feeds over the course of an hour and continues to have some desat’s as he is eating.  We’ll see if they make any changes because of the suspected reflux this week.  Other than that he’s doing great!  Daddy go to hold him this afternoon and I have some pictures and our first video!! The flip video I ordered came in and I’m learning to use it so bear with me!

Miss Karsyn is still struggling.  Her lung situation is still better and is even improving a bit.  However, her brain continues to swell and a brain scan this morning revealed the formation of some cysts on her brain.  This is normal for a bleed the size of Karsyn’s.  What does this mean?  We’re not exactly sure.  We’re still in limbo.  Not sure when they’ll move her to Children’s.  They’re not sure what can be done at this point.  She is still too tiny and too unstable for a shunt.  They could try ventricular taps to relieve some of the pressure, but are still in the process of weighing the pro’s and con’s and seeing if the trauma this might cause her is worth it.  Long story short, our sweet princess is still very fragile and the situation with her brain is very serious.  And unfortunately there isn’t a lot we can do at this moment.  The helpless feeling is so frustrating and of course we just want to fix it all.  We’re praying very hard and are searching the answers and the peace of understanding we know lies somewhere in this situation.  Our comfort comes as we remember God has a plan and has carefully orchestrated every minute of this roller coaster journey for us.  So, having said that I’ll take my rant back and I’ll take the ticket for the ride God has me on……I may not always like it but I’m not in control and I will trust the One who is!  Someone remind me of this statement tomorrow when I’m ranting again!!

Here are a few pictures (and video) of our precious miracles.  

Sweet Sister…one eye open!

Kaden cuddling with daddy today!

Kaden stretching after his play time with daddy.  You can also see his new “sheet” mommy made him! 

Little Kaden and his video debut!!  Listen closely…he has the hiccups!!