An Update on Our Little JETT Man

Well I wish I could say things have calmed down around here. Unfortunately, for us (and Jett), we have had more trips up to the hospital than we would like.  Little Jett has been a trooper through all of this while we figure out what has been causing him so much pain.  This week, alone, Jett has visited the neurologist, the gastroenterologist, the cranial-facial surgeon, the pediatrician, the radiologist, and the audiologist. 

Little Jett still has not gained weight.  Currently, he is 8 lbs 5 oz and is three months old.  He is on a feeding tube that goes straight to his intestines.  If you would like to read about the feeding tube FUN, refer to Cody’s previous post (insert sarcasm here).  Jett is also on oxygen because he holds his breath frequently.  We think the breath-holding may be due to the agitation of the tube going down his throat as well as his severe tummy pain. 

Besides the MRI, all test results have returned normal for Jett so far. The doctors are somewhat baffled.

It breaks my heart to see a little baby, let alone MY baby, go through something like this.  The neurologist told us that a lot of these symptoms can possibly be connected with Jett’s cerebellar atrophy and small brain stem.  The cerebellum and brain stem are critical components in the human body.  The brain stem, in particular, regulates body temperature, respiration, and other important bodily functions.  The cerebellum controls our fine motor skills, which include coordination and balance.  The neurologist told us the other day that Jett will definitely not be a great sports star or piano player due to his cerebellar issues.  Hearing that was really hard for me, but even more than that, we face the reality that Jett may be in a wheelchair once he reaches walking age.

Amidst all of these issues, Jett still has a cleft lip and palate that require surgery…Our poor little man!  These surgeries have been postponed and are dependent upon Jett gaining weight.

Right now, Cody and I are primarily concerned with the severe tummy pain that Jett deals with on a daily basis.  We have switched over to a non-lactose/protein and non-soy formula that we hope he will be able to digest better.  Apparently, breast milk has not been so good for his digestive system.  He screams and screams as he is digesting…and to put it into perspective, Jett is connected to his feeding tube 20 hours every day.  That is a lot of pain that he has to deal with. 

His screaming episodes take a lot of his energy.  Jett’s little body becomes so rigid that he becomes inconsolable.  Unlike most 3-month olds that lay still most of the day, Jett is constantly moving and can literally push himself out of your arms.

So here is the plan, thus far:

Next week, Jett will undergo surgery to get a tummy button placed.  This feeding tube will go straight through his stomach and will no longer have to go down his throat.  Our hope is that Jett’s breathing will improve once the feeding tube (the one he has now) is removed.

Doctors will also evaluate Jett and may propose a more invasive stomach surgery.  This surgery involves wrapping part of the stomach around the esophagus.  This surgery is typically done on infants and people with severe acid reflux.  Our hope with this is that Jett will be in less pain!

So I guess you could say that our lives have not been the easiest!  Parenthood has reached a whole new level for us.  Our emotions have been on a constant roller coaster.  Fear, sadness, and stress are part of our every day lives.  The quote, “What doesn’t kill you makes you stronger” runs through my mind often!

In all of this, however, we have to remember that we have a little baby to love.  Whenever I look at Jett’s cute, little face I fall in love all over again.  We truly have a celestial being in our home.  He will reach developmental milestones on his own time.  Heavenly Father has a plan for him and for us.  Although this is a scary time for us all, we know that things happen for a reason and that if we have faith, things will work out.  I feel privileged to be Jett’s mom.

I came across this poem the other day and wanted to share:

I Still Would Have Chosen You

If before you were born, I could have gone to Heaven and saw all the beautiful souls, I still would have chosen you.


If God had told me, "this soul will one day need extra care and needs", I still would have chosen you...


If He had told me, "that one day this soul may make my heart bleed", I still would have chosen you...


If He had told me, "this soul would make me question the depth of my faith", I still would have chosen you...


If He had told me, "this soul would make tears flow from my eyes that would overflow a river", I still would have chosen you...


If He had told me, "our time spent together here on earth could be short", I still would have chosen you...


If He had told me, "this soul may one day make me witness overbearing suffering", I still would have chosen you...


If He had told me, "all that you know to be normal would drastically change", I still would have chosen you...


Of course, even though I would have chosen you, I know it was God who chose me for you...

**Jett's Blessing Day…January 29, 2012  Excuse my puffy, crying face! Cody had just given a great blessing and we had just found out Jett's diagnosis the night before.