BBQ Wishes and Caviar Dreams

     I recently went to a Kansas City Chiefs game thanks to my friend, Sean O'Quinn.  It was a lot of fun, even though the Chiefs lost.  The seats were great too, right on the 50 yard line.  The thing about professional sporting events is that whatever is lacking on the field in excitement is made up for in the stands by overambitious fans drinking too much alcohol and getting into conflict with each other.  We sat near a couple of these fans.  And although we didn't get things thrown at us that day, I've seen it happen.  As I began thinking about these last few months and the months ahead, my thoughts turned towards professional sporting events.  Life is kind of like being at one of these games: you never know what is going to be thrown at you and from which direction.
     About a week ago, Tracy and I met with a small team of NICU staff to discuss our future plans with Jude.  Our doctor had made several phone calls to St. Luke's Hospital in Boise to inquire about the possibility of Jude returning there.  Our doctor informed us of many things about Boise, all of which would be too much to list here.  Some of the important facts about St. Luke's versus Children's Mercy are the quality of care that Jude would receive.  Our doctor said that they could take Jude at St. Luke's, however, there would be some big differences.  The most notable difference is that baby's with tracheostomy tubes are not accepted into the NICU (Neonatal Intensive Care Unit) at St. Luke's so Jude would have to be in the PICU (Pediatric Intensive Care Unit).  And although a pediatric doctor is board certified to care for an infant, it is not their specialty.  We also talked about how not only do things run differently between hospitals (kind of a no brainer on that one) but that things run very differently between the NICU and PICU and so the amount of attention Jude receives might change drastically (he get's 1:1 ratio care currently) as well as the general routine that he is used to would be different.  Our doctor, again, felt like it was possible to transfer Jude in due time but it may or may not be the best choice.  Other factors that we had to consider were that Jude would be going home with a tracheostomy tube, which he'll have for at least eighteen months, and he will most likely be going home with a ventilator.  Because of these variables, Jude is not a very mobile baby nor can he be babysat by any campus student or teen with a night free.  In Boise, Tracy and I would need to be with him at all times since we would be the only one's trained in trach-CPR, trach-care, and have enough confident experience to know when he needs medical attention or just got some extra fluid down his tube.  Here in Kansas City, Tracy's parents and youngest brother can be trained at Children's Mercy along with Tracy and Myself in all of his care needs.  In addition, they have been present with him enough to know better than most what is an emergency situation with him.
     When it came down to it, Kansas City really is the best place for Jude.  Tracy and I did have and still do have conflicted feelings about the decision.  Conflicted because we don't dislike Kansas City, but we were not ready to move from Boise.  It has always been our plan to move to Kansas City to raise our family, but we are about a year and a half ahead of schedule.  But, since Jude was also about a year and half ahead of schedule I suppose it makes sense.  Truly this decision was difficult for us to make.  Some of our deepest and most meaningful relationships are in Boise.  We are grateful for the time we did get in Boise and the people who touched our lives.  We will forever remember our time in Boise as one of the best we ever had.  For now, we look to the future in Kansas City.  A future where Jude can receive some of the best care in the country.
     Our decision is definitely bittersweet.  It's a ying and a yang, a sweet and sour, hot n' cold decision.  We love Boise but we also love Kansas City.  We're excited to be a part of an amazing family here and an amazing church but we also wish we didn't have to leave our other family.  That's why in the end, we decided to cast emotions to the side and do what is best for Jude.  It's amazing how a child changes your perspective.  Before Jude was born, I was determined to go back to Boise as early as possible (again, not because I disliked Kansas City, but because I love Boise.)  Now, knowing that this is where is best for him I'm resolved with our decision and hope for a bright future for our miracle baby.

-Chris

Mini-Update

Hello all who follow, I thought I would post a quick update with some pictures.  We are waiting for some other "blog-worthy" stuff with Jude to get processed so I don't want to write a full blog just to turn around and write another one in a day or so.  For a quick update: Jude got his brace off today.  The plastic surgeon was pleased with his progress a few days ago and decided to leave it on until this morning for "good measure" to hit the two week mark (those weren't his words but that is the consensus among the nurses and NICU staff).  He also is now in a crib and out of the warming bed.  He is doing very well and getting stronger every day.  You can also see the progression of his adema (fluid retention).  The first 3 pictures are from Valentines Day and the last 2 are from today.

-Chris

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

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