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

The Dude Abides

     Frank B Shutts said: “One very important ingredient of success is a good, wide-awake, persistent, tireless enemy.”  This nugget of wisdom has found it's most comfortable place perhaps in Jude.  In his case, his enemy is invisible yet it is tireless and persistent.  Jude had quite a night on Monday.  As is apparent from my last blog, everything seemed to be going wrong all at once.  After going almost two weeks without seeing a doctor at Jude's bedside, aside from the occasional drop-in for five minutes during rounds or consults, there were now two doctors at his bedside along with two additional nurses.  The hospital and especially the NICU is an odd place.  You want your baby to get plenty of attention from nurses and doctors so they can get better and at the same time there are few things more terrifying than seeing your baby grab all the attention of the nearby staff in the NICU.  You wish the crowd was gathering out of admiration but you know it's really out of obligation.
     (This next paragraph will be fairly vulnerable and quite dark so the faint of heart may choose to skip to the next paragraph, however, I'm sure this footnote only makes those people more curious to read it).  I have to admit, I hadn't felt that much fear and anxiety yet in my life.  Tracy's OBG specialist here at Children's Mercy had told us not to take the high's too high and the low's too low, meaning Jude will have ups and downs and we should try and stay level, emotionally.  It's kind of like telling an addict in recovery to just stop...little easier said than done.  At the beginning of all this, I seemed to be doing ok.  Like I talked about in my previous blog "Jude the Dude" I was doing my best to fight off the ANTS with Romans 8:28.  However, as Jude's condition only worsened I started to lose my fight.  As I sat and watched as one of the doctor's seemed to panick a little at the sight of Jude's oxygen levels dropping into dangerous levels and the respiratory therapist providing him manual ventilation the ANTS went marching on and on.  I started to think about what seemed to be the inevitable.  I thought about how far Jude had come only to throw it all away, it seemed.  My mind took me to a place where we would be trading in his booties for a toe tag, his crib for a coffin, and a baby book for a tombstone.  I thought about the fishing trips that would never happen, the special mornings where he and I would go out to breakfast, the two of us, just like my Dad and I used to, and how those would never happen.  As grief overtook me, I tried desperately to hold onto Romans 8:28 and Maurice's words from just yesterday: "if you really believe this scripture then you will not doubt  God's plans for you ever again."  I tried so hard to hold onto these words but as the situation became more intense those words, like Tracy's doctor's, seemed easier said than done.  Tracy too seemed to be having a difficult time in the moment, but who can blame her.  I began to think about the people all around the country praying for Jude at that time per our requests through Facebook and texts.  "If they have the faith," I thought, "then so can I ."  So, I held onto the the little faith I had left inside (as if I had any other choice) and waited.
     An hour or so later, Jude's condition had stabilized.  His oxygen levels weren't fantastic, but they had improved significantly.  The doctor who at one time seemed panicked was now in awe at how quickly Jude had recovered and climbed up the number scale with his oxygen.  Doctors had replaced his trach, which happens regularly about twice a week, and put him back on the larger ventilator (they did many other things in the process but those are the two biggest events of the night regarding his care).  As one doctor came over to check on Jude he asked what his oxygen levels were.  Where they were once in the mid 50's, the doctor now reported he was at 80.  The doctor, however, was quickly corrected by a nurse who said they were in the 90's.  "Wow!  How did that happen?" the doctor asked in amazement.  As the nurses, doctors, and respiratory therapist shared their versions of which portion of the care had contributed to Jude's improvement I couldn't help but look on with a small grin on my face.  No doubt the staff had done an amazing job in responding to Jude's need for fast, immediate care but I didn't believe, and still don't, that they alone were responsible.  My mind again went back to the people all around the country praying for Jude at that moment.  It seemed too coincidental to think that Jude could climb back up the health ladder so quickly from just some equipment changes in medicine.  In fact, there was some slight truth presented to support this.  While Jude's oxygen levels were slowly rising, one of the doctors commented that he was satisfied with Jude's levels but not exactly happy about them.  He assured us that they would probably rise by morning but in cases like this it usually took about twelve hours for his numbers to get back up to "comfortable" levels.  Ten minutes later, they were up.  Maybe Jude's body was just catching up to the medication or just getting used to the ventilator and decided to rise to the occasion.  Maybe the doctors and nurses at Children's Mercy are just that good, better than they themselves even think or profess to be.  Or, maybe God responded to the prayers of multiple people around the country praying for a special boy who they all hope to meet someday.
     Thinking back to the struggle to stay faithful in the moment I am reminded of Hebrews 12: 1B-2 which says:  "And let us run with perseverance the race marked out for us, fixing our eyes on Jesus the author and perfecter of our faith."  It made me think that at times you are going to struggle through the trials.  But its the persevering that is important.  Even Jesus in the Garden of Gethsemane went through this as he asked God if there were any other way that we could all be saved.  In the end it all goes back to making it through the struggles and hopefully strengthening your faith.  Tracy and I were able to witness what I believe the power of prayer.  We are so thankful for all the love and prayers we and Jude received.  Today, which is only two days later, Jude is back on the regular ventilator and back on track to recovery.  Without those moments where he has to face his enemy there can be no victory in the end.

To God be ALL the Glory,

-Chris

UPDATE on Jude

UPDATE:  As of midnight, central time, Jude is becoming more stable.  The last two hours have been more eventful than the last two weeks (well, almost two weeks.  He's only 12 days old).  To sum it up the best I can without writing one of my normal, lengthy blogs: Jude has an infection.  They don't know where but his blood drawing showed that he has an infection.  There was blood found at his trach site, in his stool, and in his stomach and lungs.  They may be all related and they may be a series of different things.  Most likely, the trach site is just some misplacement trauma and the rest is related.  They have given him antibiotics to treat the infection.  They take twelve to twenty-four hours to kick in.  The next twenty-four to seventy-two hours are crucial for Jude.  They have moved him back to the larger ventilator and he is running at a 100% meaning that he is doing mostly none of the work.  His oxygen levels were at fifty-four, which is terrible, and the doctor said that unless they climbed by twenty they needed a more aggressive plan.  They climbed by thirty, Amen.  He is currently stable at eighty which is OK but not where he needs to be at about ninety-five.  However, the doctor has said that if he can stay around eighty or above for twenty-four to forty-eight hours then that's ok.  There is probably other information that I am forgetting.  They have taken ultra-sounds on his head and chest as well as chest x-rays.  It's been quite an emotional ride sitting here watching it all happen.  It felt like being on trial in a foreign country without an interpreter; you know the information being passed around is important to the future but you have no clue what is being said.
     The Dude has a long long way to go before we are feeling all right about what's going on.  Like I said, the next twenty-four hours or so is crucial for Jude.  We are grateful he is becoming more stable but are still scared.  Thanks for the prayers and words of encouragement.

To God be the Glory in All,


-Chris

Jude the Dude

     My sister Katie titled her last blog "Jude the Dude" because her 18 month old daughter pronounces Jude's name as "Dude."   I liked the nickname so much that not only have I stolen it as my title for this blog but I am giving serious thought to making that his permanent nickname.  For now, Jude the Dude it is.
     It continues to be an adventurous week for the Schinzel family.  Tracy and I were surprised with a free collection of broken glass in our back seat and one of those permanent open windows you read about in luxury, European auto magazines courtesy of the guy who stole my GPS.  He did break up our week a little bit and afford me some time away from the hospital for a couple hours to clear my head so if that was the burglar's intent then he succeeded.  On a normal week, this would have bothered me a great deal.  My interest and background in law enforcement leads me to have a strong sense of justice.  So, admittingly there is still a part of me this week that wishes I would have caught the thief in the act, subdued him, and held him till police arrived.  This week, however, that part of me was far overshadowed by son and both the joys of his progressive recovery and the anxiety caused by his trials ahead.
     We also celebrated Tracy's birthday this weekend.  We had a small family party in the cafeteria preceded by Tracy getting plenty of time holding her favorite person.  All in all, I think Tracy would say that nothing could overshadow this present (not even the burglary).
    I suppose I would be remiss if I didn't talk about the real reason you are all reading this blog, the Dude.  I had originally written an unfinished draft of this blog in which I was talking about how great the Dude was doing.  Ironically the update, like Jude, would have been premature.  Jude is doing OK.  Prior to this evening he was doing great.  He has had really good blood gases the last few days and has been climbing down on the respirator setting to the point of where he was slowly climbing towards breathing independently (not any time really soon but he was on his way).  The doctors had decided that he was ready to start eating so they began feeding him through a feeding tube.  This, at first, was not successful but Jude kept at it and his residual results began to improve.  What are residuals?  When a baby is tube fed, the nurses go back hours after the feeding and through suction, extract any residual fluid or secretion out of the baby stomach that is not being processed.  Most premature babies like Jude will have some green, slimy residuals that are usually a result of secretions from the throat and different areas.  These secretions are not necessarily a negative and are not alarming.  When high levels of undigested milk begin appearing in the residuals, then this is a sign that the baby is not taking to the milk.  Jude has been going strong and has low milk residuals, which is good.  Jude also had chest x-rays a few days ago and the doctor yesterday morning said that they looked good and that Jude's lungs were developing.
     By now, if you are an attentive reader you have picked up on Jude's good condition being reported in the past tense.  Jude did not have a good evening.  This afternoon, while Tracy was holding him, Jude vomited.  This was a short time after feeding and most likely the result of an aspiration.  For those of you not medically inclined, an aspiration is commonly referred to as "going down the wrong pipe."  This occurrence in itself is not a reason to scrap the evening, that is true.  Chest x-rays from earlier in the day that became available showed that Jude's lungs were cloudy.  I'm not exactly sure what this means but unless you're a farmer waiting on rain for your crops "cloudy" is never a good thing.  Jude's hemoglobin count, which had been climbing and stable, is back down.  This is likely from a trach-injury which was discovered early in the evening.  Nurses performing a trach-change noticed that there was blood coming from inside his throat after a suction and there was some blood in his stomach which is believed to have been a drain from his throat.  His last two blood gases, which I will never understand what the numbers mean, were dumbed down for me as simply "not good."  Jude likely has an infection of some kind, although everyone is quick not to tell us an assumption that might be incorrect, and the word pneumonia has been heard by these ears around his bedside.  The on-call doctor this evening said that there may be a need for Jude to go back on the larger, oscillating ventilator if his condition is not improving.  For now, we can just wait and pray to see what happens with Jude's condition overnight.
     Despite all of this happening tonight and the ANTS (Automatic Negative Thoughts) trying to march in my head, I can't help but think about Maurice Hooks (the Lead Evangelist for the Kansas City Church of Christ) and his final point from yesterday's lesson: Romans 8:28.  This scripture reads: "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."  Maurice concluded the scripture with this point (paraphrased of course [possibly quite poorly]): "If you really believe this scripture then you will trust that everything that has happened in the past and everything that will occur is done for your own good.  If you really believe, then you will not doubt God's plans or lose faith in the future ever again."  This scripture has been resounding throughout my day!!!!  Every time the ANTS go marching on and on into my head I send them packing out the other side by thinking about this scripture and about Maurice's point.  Again and again, I have kept going back to it.  "You're GPS that was stolen is not covered by your auto insurace...."  BAM!  Romans 8:28  "Jude vomitted earlier and we're not sure why..."  POW!  Romans 8:28.  And on and on throughout the day where I would normally slip into bleak thoughts and an unnecessary list of possible outcomes God disallowed this from happening through Romans 8:28.  Tracy, who I think must recite this scripture subconsciously in her sleep, seems unaffected by the somewhat traumatic afternoon.  Her quiet calm, which is not to be confused with distance or numbness, is a result of her freakishly strong faith.
     Despite all of today, one cannot deny the amazing working of God's blessings in our lives.  We were blessed to get time with Mark and Jodi Hayward last night for a few hours (for those in the KC area who know who that is and how lucky you are when you get time with the Haywards).  We were engulfed in love and encouragement as we returned to church yesterday morning.  The amount of encouragement and support we received was nothing short of miraculous!  Though I would give nothing short of my life to take away any pain Jude has to endure, I cannot help but feel that Tracy, Jude, and I  are lucky in all of this.  We are lucky enough to be in a situation where God's love and the love of his family is being poured down upon his.  We are truly clothed in love from God and His family.  Not too many will ever get to feel THIS MUCH love and encouragement.  It is an experience that is truly unique.  We continue to be grateful for how God has taken care of us and provided us with really all we need.  Please continue to pray for the Dude and he will do his part to get back on track.  God is good and is working.  It's tough to see that while you're in it.  Like Jude crying after his heel getting pricked for blood tests, it's tough to understand the pain when your going through it.  But just the fact that Maurice was inspired to preach a message that was so quickly applicable shows that God is present.

The Facts of Life

     I would assume that everyone reading the blog is old enough to remember this reference.  You take the good, you take the bad, you take em both and then you have....The Facts of Life.  A funny reference to life but perhaps a bit more present in our minds this past week.  It's kind of funny because when you break it down, a fact is defined as something that actually occurred or actually is the case.  So by that definition the facts of life are things in life that have actually occurred or actually are the case in life.  I suppose it strikes me as funny because at times I look at my handsome sleeping boy who was so close to being taken away from us, but was not, and my brave wife who seems to be only getting stronger with each hurdle we jump (she's like a kinetic flashlight, the more you crank on her the brighter she glows) and I have to stop and think that all this has really happened.  We really are in Kansas City, Tracy really did go into labor at 30 weeks, and Jude really did defy the odds.  If you don't stop to think about the facts of life then it really just becomes reference material.
     We did meet with the Ear, Nose, and Throat Doctor yesterday who talked to us about the imaging results.  It appears that the tumor actually starts in the back of the mouth on the soft-pallet and that the blood vessels going to the tumor start back there as well.  This is not exactly good news because there is an increased chance that the tumor is invading upon other areas (although the doctor said it did not appear it was, Amen) and because it is now much more difficult for them to operate on because well, the mouth is the only opening in which they can go through and the area to operate on is further away and being blocked by a tumor.  That's not to say that they cannot operate successfully, just that it does make their job more difficult.  The second thing he told us was that there is a lot of blood flow to the taratoma.  This was not surprising to him but again, it would be more beneficial if things were different since a lot of blood flow means more blood to lose.  Think of it as the difference between surgery on your hand and surgery on your chest.  There is always going to be more blood flowing through your chest than your hand, therefore a surgery on your chest is always going to be more dangerous than a surgery on your hand because there is more blood flowing.  The last nugget of information he gave us was that Jude does in fact have a Cleft Palate.  This too was not surprising but rather confirmed by the imaging.  For those of you not familiar, a Cleft Palate is when the roof of the mouth does not form properly, in Jude's case this was caused by the taratoma.
     There has been a lot of good news given to us about Jude the last few days.  Jude is doing great on the smaller ventilator and is improving in his gases daily.  His billirubin is going down, which means he's losing his Jaundice.  The swelling in his head has also gone down significantly in the last 24 hour so he no longer looks like a "Bobble-Head Jude."  Tracy and I were discussing this morning that everything that's up to Jude, that is things his body is regulating such as temperature, oxygen saturation, billirubin levels, etc. he is excelling in.  He is fighting hard and actually my exact words earlier were "kicking butt."
     We are grateful for how the facts of life have continued to unfold.  The timing of Jude's birth in itself presents interesting facts.  My Dad, for example, was on his one week off that he will get this entire year until next Christmas (because of his brand new job) and thus was able to come visit.  If Jude had been born even a week later my Dad would only be able to come for a short weekend.  Tracy's sister, Natalie, was also in town from Alaska for Christmas during the week of Jude's birth.  Flights from Alaska don't run cheap or convenient so it certainly made it nice that she was already here, with time off to be able to see his birth.  As I have mentioned before, the fact that Jude was born smaller may have been instrumental in Jude's exit procedure going so quickly and smoothly.  Even the fact that Jude came well before my spring semester at Boise State begins, which has afforded me freedom to be with he and his mother as much as needed.  This has also spared my sanity for the time being.
     There are still a lot of obstacles for Jude to overcome.  We have been forever grateful for prayers and words of encouragement and we are ever mindful of how lucky our family is.  God has funny, sometimes odd ways of working things out and making himself known.  Last night I was reading a book about the history of the Hebrews and in it the author discussed how the Roman empire, which had higher education, numerous resources, written language, and influence over a vast territory in the ancient world was the last ruling empire over the Jews before their nation became ultimately divided.  The Romans were oppressive and hated by the Jews.  It was fascinating, however, to note that it may just have been the vast influence and resources of the Roman empire that helped spread the gospel of Jesus as far as it did over the Middle East and Europe.  This made me think of Jude.  Not that God necessarily chose for Jude to have health problems or that He necessarily chose for the Romans to rule and oppress the Hebrews, but through it all God was glorified.  God is being glorified through Jude in numerous ways.  Our faith is being tested daily but the love and encouragement we get from others comes daily as well.  People are unified in prayer for Jude.  Some have said their prayer life is increasing because of Jude, while others are praying to God for what feels like the first time (for some it is).  Like the Jews of the New Testament, this "oppressive force" (the tumor in our case) is not what any of us would have hoped for but increasing love for others and glory and praise to God just might be the end result.

To God be the Glory,

-Chris

With all the people around Jude think he was a prince or something...

      The title of this blog refers to the fact that we recently learned that at the time of Jude's birth there were 37 doctors, nurses, etc. in the actual operating room and another 16 people in the hallway including the Board of Directors and CEO of the hospital.
     The last twenty-four hours were epic in the Schinzel family.  They started with Jude getting his tracheostmy tube replaced.  They custom ordered him a smaller tube, one that would fit better for his small trachea.  The procedure was a success and he is now breathing easier and is also able to rest more comfortably.  Tracy was able to watch over the procedure and give approval.  I, however, opted out of that.  Not that I am squeamish when it comes to blood.  In fact, when it comes to that it would be quite the opposite.  Tracy would prefer a general anesthetic for a blood draw whereas I wouldn't mind doing it myself if they'd let me.  No, I couldn't watch because if something were to go wrong I would feel helpless.  I think that must be the difference between moms and dads: moms wanna be there no matter what, whereas dads only wanna be there during a conflict if they can help.  This is probably why dads are no good to talk to when their teenage daughter has a boy problem.  Dad doesn't know what is going on inside his teenage daughter's head and he sure doesn't want to help her figure out how to make any boy like her.  At any rate, Tracy was present and the procedure, as I said, went well.
     So, with his new trach tube in place it was time for Jude to tackle the smaller ventilator.  Now usually when tackle and smaller are together in a sentence it means that the issue or problem is smaller to tackle, but in this case a smaller ventilator is actually a larger, more difficult task for our young man.  You see, the smaller the ventilator, the more work he must do.  I am pleased to report that he was and is doing great with the smaller ventilator.  At first, his C02 levels were up significantly, but after some time and a little more work, he became more stable and is doing better than he was doing on the larger ventilator.  Jude seemed to remember the theme of 1 Corinthians 12 and decided that all parts of his body were equally important and must work together.  So, he has been persevering and since that time has not looked back.
     Later in the day, the doctors decided that he was fit to go to imaging.  This was terrific news since we have been waiting since his birth for him to be able to go to imaging.  The team assembled after lunch and whisked him, well whisked very quickly at a safe, controlled speed dragging behind him a ventilator and an IV tower for a CT scan.  The results of the scan would determine his surgery date for removal of the teratoma.  So, we waited for the results, busying ourselves with other activities.  Finally, Tracy met with the Neonatlogist who informed her that it was the Ear, Nose, and Throat doctors who would determine the surgery date after evaluating the scans and they....had gone home for the day.  Not exactly disappointed but a little less enthused we reluctantly agreed to meet with the ENT's tomorrow as if we had any say in the matter.
     By the end of the 24 hours or so Jude had accomplished a few firsts: receiving a new trach tube, staying on his new ventilator, and the last, but certainly not the least, being held by his mommy.  We were given possibly the biggest shock since his birth as we walked in the NICU and were told by the nurse that if his blood gases were good at ten o'clock then Tracy could hold him.  Now I've seen my wife happy before, in fact, I've seen her ecstatic.  She was pleased when I asked her to marry me.  She was happy when she told me she was pregnant.  She was giddy when she learned they were putting a DSW Shoe store in Boise.  But she was beyond giddy like I've never seen when she was told that she could hold her baby boy for the first time.  You have to understand that we were not planning on being able to hold him for months.  To learn that she could hold him this early was the best early birthday present (her birthday is this Saturday) she could have ever received (on that note, I suppose I can take back the jewelery I bought her for her birthday.  Thanks, son).  It was riveting to say the least to see my tiny baby boy being held by his mom.  To know that she had been through so much to get to this point.  She had overcome so much sickness, pain, and emotional trauma to reach this exact moment.  I'll let her share about that moment in her own blog but as her husband and his father...a more beautiful moment has never been seen on my twenty-eight years on this earth.
     The last twenty-four hours have truly been epic.  Not only for Jude but for Tracy and myself.  Seeing his progress and his strength has made me very grateful.  I've also been able to share his story with others at the Ronald McDonald House and in turn have been able to hear their stories.  This has made me grateful for what I do have.  There are many at Ronald McDonald and at Children's Mercy who do not have it as good as we do.  Some because their child is more sick, faces more obstacles, and has less than a bad chance at surviving.  Some because they are all alone in this world with the exception of their spouses and a few others.  We are so grateful of how God has worked in Jude's life and our own lives up until this point.  You don't have to look very far or very deeply into the past to see how God has answered prayers, blessed our lives, and provided for us when we were in need.  Jude's life, health, and our sanity have been a direct result of God's hands working through us and others.  Even if we weren't completely surrounded by support from our family in Kansas City and those that have come in from out of town, we would still be surrounded by the love of God's family.  This is evident from the texts, emails, facebook comments, and phone calls we receive on a daily basis.  Some are from close friends who receive the same pictures and updates my own mother receives and some are those for whom I could ride in an elevator with and not recognize them.  It can be easy when you are around such an amazing family, both biological and church, to take for granted what treasures you have.  There are those families who have never known love like that expressed in Romans 12 and who have never seen the truth of Matthew 19:26...The Schinzel family is not one of those families.

A Tale of Two Hospitals

     Well, for those of you on Facebook you already know that today was quite a day.  I suspect this post will be quite lengthy but I think it's best told wholly, in story form.  It started off as a normal, tranquil morning.  Tracy and I slept in, which for both of us meant different things.  For her, it was the first night out of the hospital, sleeping free from stomach staples and free from nurses waking her to check her vitals.  For me, it was a sweet night of slumber in an actual bed for the first time in 6 days.  We are now in the Ronald McDonald House across the street from Children's Mercy.  It is very comfortable.  It will surely become one of our charities we support throughout our lifetime.
     My morning check-in with Jude went well.  His blood gases were looking good and there were no other matters worth discussing regarding his health and welfare for the day.  So, my parents headed over around noon to the hospital, excited to take both Tracy and I to a lunch away from the hospital.  We were all feeling pretty good about the day given the bit of bad news we received from our Neonatologist the day before and since my dad, who was down the entire day Sunday with what he now thinks was food poisoning, was up and about and seemed back to normal.  Before lunch we (Tracy and I) had to take care of a little admin business at the hospital.  As we came out of the office my Mom was laying on the couch in the waiting room.  I assumed she was just exhausted, same as everyone else after the week we all had.  As she sat up she smiled as said she was resting because she had a deep pain in her lower abdomen that was starting to hurt more.  She insisted that it was not that bad so we headed out to lunch.  As we got the restaurant, which was only a two miles away, she began to experience more discomfort and pain.  Before our food arrived at lunch my Mom was writhing in pain in the back seat of the car, tears streaming down her cheek, in distress about receiving medical assistance since her health insurance will not be active till February.  After a few minutes of discussion and insisting on my part, we canceled our lunch orders and drove to the regular hospital across from Children's Mercy.
     Once we got Mom inside and admitted, Tracy returned to Children's Mercy to take care of some personal baby business for which she needs to stay on schedule (may or may not have lost all the guys reading this depending on how much you paid attention during post-pregnancy activities).  As I left to check-in with Jude they began a series of tests on my Mom which over the course of the day included: two CT scans, an ultrasound, and others that I cannot remember or was not told about.  My Dad had to fly back to Spokane within a couple hours of my Mom being admitted.  He just began a new job after two years of unemployment so he had to return today for fear of losing his job should he not be at work tomorrow.  When I returned from taking Dad to the airport they had run a few of the tests mentioned before on Mom and had no clue what the problem was.  She insisted that I return to Jude and that she would call me. 
     As I got back to the NICU to see my son, I received a phone call shortly upon my arrival from my Mom.  She said that the doctors had seen a mass on her kidneys.  They didn't know what it was but there appeared to be a mass.  As I sat there with my brother-in-law, Jacob, staring at my son  I began to think why all of this was happening.  I started to think what God was wanting to teach me but then I stopped myself and asked "why should you think that any of this has to do with you?  What kind of ego-maniac are you to assume that just because tough situations are happening around you (although I would like to think Jude's situation is at least partly happening to me as a parent) that they are somehow centered around God speaking/working to you or for you?"  As I snapped out of my ego-centrism I began to think that myself and other Christians often want to find meaning in everything.  If we get turned down for a promotion at work it is because God has something better for us.  In the same day, find $10 on the sidewalk then that was God's way of trying to cheer us up, we think.  But sometimes, I think, things just happen.  They happen because God allows them to happen because God allows free-will.  If I try to find meaning in everything that happens in my life, in Tracy's life, and especially in Jude's life over the next year (and more so the next few months) then I will find myself dazed and confused.  Because bad things happening in life do not directly correlate to God's love for us.  If Jude were to die tomorrow, I could not rightfully assume that this meant God loved Me, Tracy, or Jude any less and this is why he took Jude.  In the same way, if Jude has rough days, weeks, or is stricken with Cerebral Palsy this is a result of imperfect results in an imperfect world.  My mother experienced pain today because, well actually we don't know why she experienced pain, she was discharged with the source of her pain never being determined.  But one thing I am certain, it was not a result of God trying to rub salt in a wound to teach a hard lesson.
     As I have shared with many who read this, my younger brother said a profound thing when I told him about Jude's diagnosis.  He said this was what I had been preparing for, that as a Christian, you are preparing for hardships as a way to prove your faith.  Without hardships, you simply cannot prove your faith.  It would be as if a man attempted to prove his bravery without being put in danger.  How can you say you'll stand up to something when there's nothing to stand up to?  So for now, Tracy and I try our best to stand the test of faith.  For the first time in my life I feel as though I can grasp with some semblance of understanding what James meant in James 1: 2-5.  It is not the hardship itself that you take joy in.  You see, this always threw me.  I always thought, "how can I be expected to actually be joyful when terrible things are happening?  Surely this is something that I will never accomplish."  But, as I said and as I believe James was saying it's not the hardship that you are celebrating.  It's the fact that when the hardship comes you realize that: 1) you had faith you didn't think you had (HUGE discovery for me the last six months and 2) faith is rewarded with comfort.  I have felt more comfort (or Hupomone the "comfort cascade" for those of you who speak Greek or know Dave Weidner) from God through the small amount of faith I have mustered this last week.  Perhaps God's purpose in today was not to increase MY faith, increase my dependence upon Him, and provide an opportunity for comfort but it was, as they say in the medical field, a side effect.
     Thanks to all for your support, your messages, texts, phone calls and prayers.  Tracy is doing better each day and continues to surprise me by her strength and faith.  We are eternally grateful and know that it is not without God's family that we are here and doing as well as we are.
 
     Humbly,
            
     Chris

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.