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

a few random thoughts from a mother

I’ve found myself wanting to share things but they don’t always seem like enough to blog about, plus getting me to actually sit and blog seems to be impossible.

The first:

It’s funny how the moment you have a child your whole life becomes first. It as if your whole life starts over (in some ways it really does) and you are aware of every moment and everything you cherish the smallest thing because it was the first and that will never change. The first time they look at you, the first smile (even if it is gas or a reflex), the first time home, haha that first car ride, the first feed, the first diaper change, the first kiss, the first night, the first time you fit into your pre pregnancy clothes( already am, and yep I am bragging). Some of these first I can’t wait for, they feel like a life time away! Being in the nicu I realized I may not be the person who experiences his first (changing his first poopy diaper I did not mind missing!) I was not the first one to bath him, or the first one to feed him, I did not get to be the first one to put him to bed at night, the first one to dress him or even the first to see him open his eyes. It is a weird feeling to come into the nicu you and hear of his first that I missed.  Being in the nicu you first are also very different; for instance his first poo which happened days after being born was a huge because we were all not sure how his gut was working or if it would work and being on morphine and no food it only slowed the process more. The first night leaving the hospital without my baby. The first time I drove myself, yep I bawled. The first and only time I have heard my baby make a noise, sounded so faint but I stood there forever just listening to him. The first day he spent on the lower vent.  The first time Chris & I both left the area of the hospital together, I did sit through Church with my phone in my lap staring at it waiting for it to ring. The first time I saw him suck on his mass although kinda icky was great that he had sucking abilities or the first time I saw him swallow even the first time he throw up (that was on me) were all great things for Jude… Even though there are first I won’t get to experience I am so grateful that for the first that he has had and I often sit and day dream about the first that are going to come. With each first he has it becomes more and more real that I am his mother and when he is 18 and I let him stay the night somewhere for the first time (haha) I am sure I will cry myself to sleep that night!

Silver lining

I guess it could get very easy to get caught up in your own world during this time and even to sink into a woe is me place but I feel that God has worked hard to open both Chris and I’s eyes to see the positive side of things. It is not always easy but honestly the more I can look at the bright side the better I do.

They had a night called journaling through the nicu and so I decided to go, this was one week after Jude was born. There was three other families there that night, we all went around the room and shared just a bit of our situation. A couple things hit me while these families were sharing; the first thing was that none of these families knew that their baby would be headed to the nicu. They all thought going into labor they would be delivering a healthy baby and would be taking that baby home. It is hard to process your baby having to stay in the nicu but in the moment when there is supposed to be great joy to have sadness it can turn your whole world upside down. I felt so thankful that Chris and I knew ahead of time that we were able to processes everything early on so that we could handle what lied ahead. My heart goes out to those moms and dads who are not as fortunate as we were I can’t imagine having to go through that. The second thing that hit me was how blessed we are to be with family. I knew this was a great thing but that night it hit me even more. Two of the three families were not from Kansas City. One family particular was from the middle of Missouri about two and half hours from here. When their baby was delivered the baby had to be flown to Children’s Mercy and the parents had to drive. This family also has a four year old son, they now have to try and juggle living in both places taking care of their son and when they are here they don’t have family in the area and a huge support of spiritual family. That is like a lot of the families in the nicu. We are blessed to have a great support here! This time in that class really opened my eyes to the situations around me, I am so grateful to be taken care of. I feel for these women, I am hope that they each at some point can feel comfort and their hearts can be at peace as they spend time with their baby.

Orange bracelet:

I never thought a bracelet would hold so much meaning. Chris & I wear these bright orange idea bracelets that look like we just went to a concert. This bracelet has Jude’s info on it and allows us to pass through security at the hospital without having to stop and show ID. This bracelet means Jude is mine I have a son and he is real. This bracelet also means I have a son in the hospital who cannot come home with me. I feel a weird attachment to this bracelet because it connects me to Jude and when I am not with him it is a reminder proof that I am still connected.  Every time I see someone else in the hospital with a band I wonder about their child and I feel for their situation. I wonder if their child is in critical care, if they are from here, do they have support, how are they holding up? 

Plans, what are those?

Haha anyone that knows me knows I love plans; I love to make plans for everything all the time. I am ok with change actually it doesn’t bother me at all so long as I can make a plan with that new change. Really I can’t help it my mind makes plans even when I don’t know I am doing it, Chris is learning to love that part of me J . Well let me tell you, the nicu is no place for a planner or maybe Jude does not like plans either way this has been a different world for me. From the very beginning this pregnancy has changed my plans constantly, which like I said before is fine so long as I can make new ones. People are always asking me what’s the plan, how long are we staying, when is Jude going home etc. and my response is we don’t know we have no plans. Normally this would stress me out but it doesn’t, not now.  Now I just enjoy Jude  and laugh when I think how out of control and how impossible it is for me to make any plans. 

My Jude is wonderful! he is so adorable and is filled with so much personality already. I love him so deeply. 

Last Minute Consult

     When I think about getting the best care for my child, my wife, myself, or anyone else important to me, last minute is not a word that I would commonly associate with "best care."  However, in this case, last minute turned out to be a positive thing.  I'm sure there are many out there that want further explanation as to why Jude's surgery is being moved to next Tuesday (I know I was when the doctor first told me).  Although it is painful to have to wait another week, for both us and possibly Jude, it really is probably the best thing.
     Tracy and I met with the Ear, Nose, and Throat doctors yesterday afternoon to discuss details about the surgery and sign the papers for the approval of Jude's surgery.  However, we never got the papers and the discussion did not go the way we thought it was going to.  The attending ENT told us that as he was finishing up his preparatory work for Jude's surgery he had a fleeting thought.  This thought was whether or not he should call Radiology and consult them about putting in a catheter into Jude's carotid artery (don't open a new tab to google yet, I will explain all of this in more detail).  The doctor had originally assumed that since Jude was premature, his artery would be too small to fit a catheter in.  Radiology said differently.  So, with the approval from Radiology the ENT team decided that the catheter was the best way to go.  The downside to the catheter is that with everyone's different schedules (ENT, Radiology, Plastic, Neonatology) there was no availability to put the catheter in until Monday.
     You might be asking yourself "what is the carotid artery and why would Jude need a catheter in it?"  If you are like me, you need this dumbed down a bit for those who didn't go to med-school or watch House.  The carotid artery is the artery that supplies the head and neck with oxygenated blood.  It is divided into two arteries: the right and the left.  The left carotid artery supplies blood to the face and in Jude's case, the tumor.  The catheter will be inserted in the growing area and up to where the carotid artery splits off in the neck, the left going to the face and tumor and the right going into the brain.  Once the catheter is in place, the doctors will deposit a gel-like bead that will block the blood flow to the face and subsequently the tumor.  The bead last for twenty-four hours and then dissolves.  Doctors would put the bead in the day before surgery so that it is not completely cutting off blood flow but slowing it significantly.  They would do this so that the eventual bleeding that will occur as a result of removing the tumor will be lessened and more easily controlled.  So, we are once again just waiting, hoping, and praying.
      I can't help but think that God had something to do with this.  Not only just because the ENT decided last minute to check to see if this much safer approach would work but also because well...it will.  Based on Jude's size, his arteries were expected to be too small for a catheter but on a whim the ENT decided to check on it.  The ENT told us multiple times that he was sure the answer would be "no" when he called to check on the catheter procedure and was so surprised to learn that it would.  I like to think that this was God's way of nudging the doctors in the right direction and letting everyone know that He is still in charge and is present in all things.  Thanks for all the prayers and continued support.  We'll keep information as up to date as we can.

To God be the Glory,

-Chris

Veiled Excitment

     Every semester in my college career I have faced what I call "veiled excitement."  It's the term that can best describe how I feel right before my last final exam of the semester.  I feel excited to soon be done with the semester and to be on break, but it is veiled by the anxiety that goes with taking any final.  Like Jude's upcoming surgery, there is always a chance of failure associated with any final exam.  Obviously, my son's major surgery and a test for school are not an equal comparison of importance.  The veiled excitement and anxiety that I feel are a million times intensified.  I know Tracy also shares my thoughts with similar feelings of her own.
     Jude will undergo surgery on Tuesday morning at 9:00 am (Central Time) to remove the tumor from his mouth.  The doctors met last Tuesday and decided that it was time.  He has grown some (I believe he's up to about 4lbs 12oz) and is stronger now than he has ever been.  The most significant advancement in his health has been the development of his lungs.  Although they are not considered fully-developed, he has made steady progress over the last two weeks and doctors feel that he is stable enough to undergo the 3 to 5 hour surgery needed to remove the tumor.
     The plan of attack, we've been told, is to "amputate" the tumor at the front of the mouth in order to control the initial bleeding and then, once the bleeding has mostly subsided, advance to the inside of the mouth and remove the stem of the tumor.  In addition to the surgery being difficult for the ENT's, because the tumor begins at the back of the mouth, the surgery will be dangerous for Jude.  At just under 5lbs, he is still pretty small.  For an adult there are risks with any surgery, for an premature infant these risks do more than double.  Doctors feel confident that Jude will be do all right and Tracy and I are more than optimistic.  Still, there remains the dangers for such a young baby to go through such a big surgery.
     We are again so grateful for all the support that we have received through numerous outlets in our lives.  We appreciate all the support and prayers and hope that Jude will receive more prayers as Tuesday approaches.  For those of you on facebook, Tracy's father is starting a 24 hour prayer chain that is beginning at 7:00 pm on Monday night and continuing on through Tuesday evening till 7:00 pm.  If you are interested in filling a time-slot just let me know or you can just pray on your own (I don't think God requires you to sign up for the prayer to be efficient).  I will be posting updates after the surgery as they come.

To God be the Glory,

-Chris

The hardest part is to watch him cry.

   So I decided today that I was going to blog no matter what, I have been trying to organize my thoughts for the last who knows how long and have many partial blogs. So this blog I decided would just be a collection of random thoughts and no real direction. … Who knew today would be the day that Jude would get very sick, thus my desire in what to blog changes ones again.

   My faith has always been solid and comes easy to me, not just in these trails with Jude but all my life, my belief in God and the power he has. I am fully confident that God has been at work in this whole processes.

    What is hard for me is pain I hate feeling pain and I hate to see others in pain. I will do anything to avoid pain and ease those who are hurting. The first day I saw Jude cry I thought my heart would break the hardest part about the whole thing is that he cries with no sound. Not only can I not stop his pain but it is like I am watching my boy from a glass wall, I have never felt so far from him. I have never felt so helpless.  …. So as you have probably figured out, I did not finish my blog that Monday. We stayed with Jude till about 2am and then I went back and crashed but instead of starting a new blog I will just finish this one…. Jude’s pain has seemed to be an ongoing battle for me and everyone else this week. They have begun to wean him down on his morphine drip. Their reasoning is that they do not want him to build up a tolerance for it because he will certainly need a lot after his big surgery, as well the longer he stays on the morphine the harder it will be to wean him off.  I understand both of these reasons and I even agree with them however I also believe that there is no reason he should be in pain. They give him morphine shots “as needed” to help with pain, this is where the cross road has become tough because my opinion tends to be different from the nurse, specially a new nurse.  By looking at his status the nurse can tell he is in pain or not  and by looking at him I as his mother can tell you if he is pain or not. What I call pain they call agitated or just a little fussy. I have talked with multiple nurses, doctors and others to discuss what I think is best. The response is normally “well you are the parent you are with him all the time and you know best, tell me what you see” I tell them what I see and then it is followed by a “well we will watch but all of his status are showing that he is not in pain” and then they end with the “you are his parent you do know him best” … this drives me nuts, if I know best why do you not do as I say? Or if you really feel you know best then don’t give me that line. … I am not saying this all to vent but to share that this is my battle it is not the issue of faith but allowing my son to be in pain when he has done nothing. This is what will quickly bring me to tears. I want every one of his nurses to love him and care for him as much as I do, even though they are great nurses this will not always be the case. I don’t understand why he has to feel this pain; I don’t understand why this has to be protocol. I can’t stop his pain or change it, I can’t just take him and leave I wake up every morning wondering how much pain he was in overnight and how much pain he will feel that day. This is truly a feeling of complete helplines. I feel like every day I understand more and more how God feels through watching our pain. I know this is something that will never get easier for me, how could I ever become numb to the pain my son feels? I just have to trust that even though I cannot hold him through his pain or take it away that he knows how much I love him and that it brings him some comfort.

tracy

The Storm is Passing Over

     A friend of mine, we'll call him Reorge Rebran to protect his identity, while on a road trip to "Shmew Shmexico" told me "the best time to speed is going uphill." Reorge's advice was for avoiding law enforcement speed traps, which are usually at the bottom of hills, but I think it also serves as a good metaphor for Jude's progress this past week. Jude is facing an uphill battle but he's been speeding up that hill.
     After his rough Monday night last week, Tracy and I were much more guarded in regards to Jude's health. The fine line between reality and hope is faith. Tracy and I have done our best to fight the good fight and stay faithful.  We have had immense support from all over the country from close family members to nameless faces. We have received emails, text messages, and phone calls all in support of Jude and ourselves. We have also received financial support in the form of gift cards, money, and an overload of good food that's been brought to the Mitchell's.  We've been told by some that Jude's story brings them hope and has reignited their faith.  Whether it was encouraging to us or others, the last three weeks have shown how God can work in difficult situations to show His love and build up faith.
     Most importantly, Jude has been benefiting from the encouragement and prayers as well.  Since his rough night on Monday he has continued to climb back up the health scale.  The reports from the doctors and nurses have continued to be positive.  Jude is being weened down on his ventilator daily.  The blood gases, which is a blood draw that reveal the oxygenation in his blood, CO2 levels, ect.  have been steadily good.  He has gained some weight, a little over half a pound, in the last week.  He is still being fed at the moment though, due to the complications that arose last week from feeding.  Overall, Jude is doing quite well.
     We have no updates on when the surgery to remove his taratoma will take place.  We have been told that a meeting will take place tomorrow between the ENT's, plastic surgeons, and Neonatal doctors to discuss possible options.  We are eager for the meeting to occur but we are also aware the meeting may not bring any new answers.  Doctors have informed us that the meeting is a "progress report" and may not yield any dates or new information for us.   Like a ten-year old forced to sit on Santa's lap one last time, we reserve the right to be skeptic.  We are hopeful that the meeting will at least provide us with the milestone needed to be reached for a surgery date to be set.
     We are very grateful for all the love and support we have received.  The toughest day-to-day challenge now is just waiting.  I suspect that Tracy and I will emerge from this experience with a higher tolerance for patience.  Both the short-term and long-term future of the Schinzel family is up in the air at the moment.  This has been extremely difficult for me and I'm sure torture for my wife, the planner.  My feelings at the moment are like an amplified version of those you feel when you sit in the waiting room at a quick-lube to change the oil in your car.  I feel like I have an idea of how long it will take by the number of cars I saw in line in front of me, but I can't really say for sure because I can't control any of the variables after I hand the keys over.  And so, as we handed the keys to our baby over to the doctors at birth (although we really never had the keys I suppose.  Maybe I should have spent more time on a better analogy) we are sitting in the waiting room, drinking bad coffee and watching episodes of courtroom tv.  At least our waiting room has a lot of friends and family stopping by to check-in.
     So, for now we are hanging out in the waiting room, both figuratively and literally.  All in all, things are going as good as they can be in this situation though.  I feel that God is refining Tracy and I through Jude.  We are learning to put Romans 8:28 into practice as well as understanding better what Paul meant in Philippians 4:11-13- "I am not saying this because I am in need, for I have learned to be content whatever the circumstances.  I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength.

To God be the Glory,


-Chris