The Ol' Ball and Chain

     We've all heard the term "The Ol' Ball and Chain."  It's a term used to describe a wife that holds you back from doing what you really want/wanted to do much like the prisoners that used to wear a ball and chain were kept from doing what they wanted to do.  I don't want to focus on what the ball and chain prevents a person from doing though.  My wife is my ball and chain not because she prevents me from doing what I want to do (although she has prevented me from doing things I probably shouldn't have done and for that I'm NOW thankful) but she, like a heavy ball, is my anchor.  Now, calling your wife a ball and chain is bad enough, but a heavy ball?  I think by the time this blog is over with I will have explained my harsh choice for an endearing term.
     As I have mentioned before, Tracy spends most days at the NICU.  Now, when I say most days I don't mean like how you work at a job most days meaning five out of the seven days a week.  I mean that she is at the NICU everyday, all day.  She does find time to venture away for a couple hours here and there for lunch outside the hospital some days or if family or friends come in town she'll take a couple hours to be with them.  But on a regular day (which is most days otherwise it ceases to be regular) she is at the hospital up to fifteen or sixteen hours a day.  If you read my last blog you'll know that this is draining. 
     I take time nearly every day for myself.  I go for long prayer walks, go to the gym for a few hours (don't get too proud of me, the gym's a long drive from the hospital), do home improvements at the Mitchell home, occasionally meet up with friends, etc, etc.  The point is: as crazy as I get being at the NICU for as long as I am each day, Tracy is always putting in nearly double the hours.  She's by Jude's bedside nearly all day long and sometimes late into the night, often after I've walked back over to the Ronald McDonald House for the night.
     Now, I know many of you are thinking "well, sure she is.  She's the mother.  She has motherly instincts to nurture so it just comes easier to her to be there.  I mean, that's what most mom's would do."  And I would agree.  Most moms would probably spend just as much time as Tracy does at Jude's bedside and most father's would probably get away about as much as I would.  I think what separates my wife from most and what makes her my ball and chain, our anchor is her dedication to Jude's care.  You might think that I'm informed on my son's care by reading my blogs.  What you probably don't know however is that I get a lot of my details from Tracy (and a lot of my informational proofreading corrections too).  Tracy is not only at his bedside everyday but she is constantly asking the questions that most of us don't think to ask, out of love for her son.  Tracy also invests time in learning how to take care of Jude.  I don't mean in the traditional sense of diapers and burping but learning details of a trach clean, trach change, G-Tube maintenance, etc.  If it wasn't for Tracy I would be about half as educated as I am in my son's care.
     In addition to caring for Jude though she also cares for me.  I've been amazed at her strength, faith, and endurance.  It's like two guys competing for a promotion at a construction site: if one guy picks up three boards, the other guy picks up six.  If one guy gets a wall framed in ten minutes, the other guy gets it framed in five.  No matter how much I push myself, Tracy always has more endurance than I do both in the spiritual and physical realm.  I keep asking myself when she will need me.  When will she need a talk about perseverance in faith like the one's she's given me?  When will she ask me for some time away to clear her head like she's provided me time and time again over the last couple months?  When will she need me to tell her that it's going to be ok?
     And this is why she is my anchor, or rather our anchor.  My ball and chain.  She is the glue that holds the family together (side note: if you've met Tracy's mom you'll know where she learned it from).  I think over the last couple of months we've been able to look at other couples at the hospital and say "I'm not sure how they are going through this without family close by like we've got."  I now look around and say: "I'm not sure how these husbands are going through this without a wife like I've got."

Fatherly Anxs

    As many of you know I've been asked to write a manuscript by my University Department Chair about Father's of Premature Babies.  Below is piece of the rough draft of sorts for the eventual manuscript:

      In recent years, I've gone to a few movies by myself.  As a younger man, I had written this off as something that only sad, lonely people do (I apologize if this is a regular practice of yours).  I've gone once because I had time to kill when I was out of town, and a couple of other times when I was avoiding reality and needed a 90 minute escape.  I've found that for me, going to a movie by myself is not as rewarding as I think it's going to be.  I think for most people, a movie is more of a social event then we realize.  When a movie is funny, we turn to the people next to us to confirm that what we are laughing at is actually funny.  When a movie is scary or dramatic, we look to others for solace or to share in the moment of terror or dramatic astonishment.  But when you go by yourself, there's a feeling of loneliness.  A feeling of "I should be enjoying this more than I am."  I remember having that feeling as I watched Captain America in theaters this last fall.  As I sat there watching the action-packed movie I thought to myself "I know this is a good movie.  It got great reviews.  It's not boring.  The acting is good.  I was excited to see it.  Why does it not feel like I'm not enjoying the movie as much as I should?"  The NICU, can feel much the same way but instead of 90 minutes it's shaping up to be more like 90 days and even longer.
     A regular day for the us at this point consist of Tracy and I waking up sometime usually in the 8 o'clock hour and making our way across the street to the NICU sometime between 9 and 10 am.  From here, I will usually stay for less than an hour before I'm off to the gym for a couple hours.  Tracy rarely leaves on a normal day.  Upon my return in the early afternoon, we are usually in the NICU till about 10 o'clock at night and on occasion a littler earlier or later.  Basically, everyday is almost exactly the same as the day before.  The only way I know what day it is comes from thinking about when the last Sunday was because we go to church on Sunday.  Now, getting back to my movie example.  How is a movie by yourself like being in the NICU?  Like the movie that you feel you should be enjoying, I too feel like I should be enjoying my time with my son more.  Most fathers don't get to spend all day with their newborn sons.  They must leave shortly after their child is born for eight to ten hours a day for work, back to their regular routine.  I have no job to go to, however.  My regular routine is 1,200 miles away.
     The NICU is a place unique to itself.  Unlike a regular hospital room, there are no walls, no doors.  But even in regular hospital rooms, there's not typically much to see or hear.  Patients either have visitors who they are talking with from time to time, or they are watching tv, reading, or sleeping.  In the NICU, it is rarely quiet.  Even if Jude is asleep there is at least one other baby crying or a machine ringing off.  As far as productivity, it's a black abyss.  Again, even if your child is not requesting your attention through his voiceless cries, there are constantly nurses, nurse practitioners,  neonatologists, hematologists, neurologists, respiratory therapists, respiratory therapist students, pharmacy technicians, cardiologists, social workers, chaplains, and custodial staff coming to the bedside (I'm embellishing perhaps a bit on the frequency of the visits but not on  the number of different people we see throughout the week).  I remember thinking at the beginning of the semester that I should be able to get my whole semester's work done in about a week.  However, I find myself so distracted on a regular basis that literally days go by without accomplishing a single homework task.
     Lately, I have found myself wandering away from the hospital more and more to my in-laws home to perform home improvements.  It's all I can do to gain back some kind of control in my life.  It's not just the control though, I do enjoy working with my hands.  Every time I leave, however, I find myself feeling guilty.  Guilty that I'm leaving Tracy to be at the NICU by herself (although she's made friends with a few of the nurses) and guilty most of all because I'm leaving Jude.  But then I think back to those fathers I spoke of earlier who go back to their regular routine.  I've come to believe that it's just natural for a father to begin wandering back to his normal routine.  As I've talked more and more with Tracy, we've discussed that mom's just have that nurturing nature while dad's do not.  That doesn't mean that I don't dote over my son while at the NICU but it's normal for fathers to feel anxious and depressed about the situation.  If my child were a normal infant than he would be at home with his mother while I would return to work.  It's only natural than that since he isn't a normal baby and has to be in the NICU that those feelings would still exists for me, a father. 
     The more I wander out the more I realize that the NICU is that lonely movie theater.  Movies are not meant to be watched alone but rather with friends and family (or the occasional date) just like babies are not  meant to live in the NICU but to go home with their families.  Once you realize that your new normal doesn't feel normal because it's not normal (say that five times fast) you can begin to feel better about those guilty feelings of wanting to escape the NICU.  It's healthy to take some time away just to clear your thoughts, see what the weather's like outside, and what is happening in the world away from the hospital.  When you return, you're refreshed and eager to see your baby and spouse.

Feeling so fly like a G-Tube

     I love to fish.  To me, it's a fun weekend activity to get your gear, hop in your boat, and just relax out on the lake.  You throw your line in the water and just wait for the fish.  Whether you are using a bobber, a spinner, fly fishing, or I guess even spear fishing, you are waiting in the boat or on the shoreline for that keeper to come along.  While you wait, there's not much going on (which some call relaxing while others call it boring).  Then, suddenly and usually without notice, it gets exciting!  When the fish takes your hook you immediately change your posture and in most cases your tone and work to reel the fish in.  Even the toughest skeptic can't deny that catching that big fish in is exciting.  Being in the NICU, much like fishing, is a waiting game.  Over the past few weeks, there hasn't been much going on in Jude's world.  It's been well over a month since his big surgery.  It's been weeks since he had his corrective brace off.  So, like fisherman, we've been just sitting and waiting for the next exciting moment to come along.  And again, like fishing those moments come without notice.
     We've been talking with doctors for a few weeks now about Jude getting a Gastrostomy Tube (feeding tube) aka G-Tube as it's often abbreviated.  We have been talking with doctors about this before Jude was born, so we knew that someday it would be coming.  In the past few weeks, we've began talking more and more about his need for a G-Tube and the possibility of that procedure happening at some time in the near future (we have learned from the NICU that the "near future" is a loose term.  It's like when a wife asks her husband when he is going to get that Honey Do List done and he answers "sometime in the near future."  That could mean when this tv show is over that I'm watching or after I am done voting in the next presidential election.)  Needless to say, we have learned not to put a lot of stock in terms like "the near future."  But we were surprised today when a doctor popped into our pod today and told us that he had reserved a spot for Jude to have the G-Tube surgery this Wednesday at 7:30 am.  One of our doctors had said she was hoping to consult this week about the G-Tube but we had no idea it would move this quick.  So, like a fisherman jerked from his afternoon nap by a big fish, we were now consenting to a surgery less than 48 hours away.
     For those who are not familiar, a G-Tube is a tube that is inserted into the stomach through the abdomen that a person can receive liquid foods through it (for those wanting extra knowledge, the words Gastrostomy Tube above are a hyperlink taking you to an informational website).  In addition to the G-Tube, however, Jude will also be receiving a Fundoplication procedure or Fundo for short.  A fundo is a procedure in which the upper part of the stomach is wrapped around a part of the esophagus.  This creates a tunnel out of the stomach the esophagus must then pass through and strengthens the muscles of the esophagus associated with preventing reflux.  This procedure is necessary because Jude has a problem with reflux due to trauma caused to his hard and soft pallets from the taratoma.  Left untreated, Jude would probably reflux constantly and would therefore not only stop getting nutrition that he desperately needs but could create serious issues with aspiration pneumonia which is caused by fluids traveling back up his tube and then down his bronchial passage into his lungs.  Either way you slice it, chronic reflux with a trached baby is bad news.  So, Jude will have both procedures done laparoscopically by making a small incision in his belly button and four others, two on each side of his abdomen.
     So, we are once again taken from our time spent just waiting in the boat to the excitement of fighting that fish (figuratively of course).  The procedures are not terribly risky, however, with Jude there are some increased risks due to his blood clotting treatments he's been getting as far as bleeding is concerned.  And as always, there's risk involved with any surgery especially when your baby has to be fully anesthetized.  Prayers are always appreciated.  We are much less nervous for this procedure than the last but at least for myself, there's still that unnerving feeling when your baby goes in for surgery.  We are so grateful that God is moving and hopefully soon so will Jude.  These procedures take Jude one step closer to getting healthy enough to leave the hospital.  Once they are complete, we need only work on his PDA (Patent Ductus Arteriosus) but that is for another blog...

To God be the Glory,

Chris