The Limbo Dance

     The limbo dance is a challenging dance.   As you bend your body backward to go under the pole, you use the strength of your leg muscles to keep yourself up and stay focused on maintaining your balance as you slowly make your way towards the other side where only then can you stand upright.  Like the dance, "being in limbo" requires both strength and balance.  The strength and balance, however, is more psychological and emotional rather than physical, as you strive to balance your emotions and use your strength to push through to the prize at the end.  Tracy and I are discovering that neither limbo is easy.  Jude, however, is doing very well.  His surgery was successful, although I'm sure everyone knew that already.  He is wearing a prosthetic device which re-aligns his lower jaw.  Due to the size and weight of the tumor, his lower jaw was never able to close thus it grew downward.  Now that the tumor is removed, his jaw naturally does not close on it's own due to both the alignment of the jaw and the atrophied muscles.  So, he must wear this device for two to four weeks.  It is an invention from the plastic surgeon here at Children's Mercy which he has used with babies like Jude before.  It is basically a strap that goes around his head like a big head band which has two mounts on either side of his forehead.  From these mounts, a chin strap is able to be velcroed on to essentially pull his chin up so his mouth is almost closed by the force.  It also has a chest strap that is mounted to a sheep-skin covered board that he lays on and keeps the entire device anchored and secure.  He looks great though.  It really seems to be working and when we take the straps of for a few minutes each day (he has to wear it roughly 23 hours a day) you can really see the progression. 
     He is getting stronger.  His PDA (Patent Ductus Arteriosus) has closed some on it's own.  The doctors would like to wait until next week for another Echo to see if surgery might be necessary to close it.  He was having some increased respiratory problems due to this, and still is to some degree albeit lessened as of late.  They have begun feeding him again, but it only a small amount.  The doctors have informed me that this is due to the fact that when your gut is full it requires more blood flow and they feel that it is more important for the majority of his blood flow to be going towards his breathing right now.  He is much more aware nowadays.  He will wake up for a good hour each day and open his eyes and look around.  This, obviously, is the highlight of our day and truly there is no feeling that really captures how it feels to look into his eyes.  As cliche' as it sounds, it's one of those things that you can't really know until you have your own child. 
     The clotting in his head is doing better.  I just spoke with Jude's Hematologist (blood doctor), Dr Acula (ok, that's not his name but it would be a lot more fun or scary if it was) and he informed me that Jude's blood work was looking good and that his clot would most likely resolve itself with the help of the Heprin shots.  For those of you that don't remember, Jude developed a clot in his brain a few weeks ago and due to the fact that he was having surgery they had to wait until after to treat it.  This clot was in addition to the inter ventricular hemorrhaging that he had experienced shortly after birth.  So, we are happy to hear that the clot seems to be getting better.  Jude is back on the larger ventilator, temporarily because he was having a hard time, respiratory-wise, post surgery.  He will most likely be back on the regular ventilator by Monday.
     Tracy and I had a family meeting with doctors yesterday to discuss Jude's future treatment and time line.  We were given a lot of hypotheticals and possibilities so we have some bigger life decisions ahead of us in the next few weeks/months.  It's definitely getting tougher to be in limbo.  Personally, I thrive on structure so it has become difficult to come to the NICU day-in-and-day-out and just sit by his bedside.  You would think that it would be the perfect place to get some good reading and homework done but the NICU is surprisingly noisy and full of distractions.  It feels like we can't go more than ten minutes sometimes without someone coming by to fill us in on something or check on Jude.  Tracy remains steadfast and dedicated to her roles as a mommy.  I take some refuge in going to the gym whereas she is able to stay by the bedside roughly twelve hours a day.  We will hopefully have some more information soon on what our future plans will be.  For now, we wait and just keep hoping and praying for Jude's triumphant departure from the hospital.  We are trying our best to stay in the middle emotionally and are spurred on by love and encouragement from our family and friends and the faith given to us by God.  Thanks again to all of you who have provided support.

To God be the Glory,

Chris