Good Decision?

Cody and I wrestled for weeks with a tough decision regarding Jett.  Due to Jett's condition, it is likely that he won't ever be able to take food by mouth.  Therefore, we looked into a more "permanent" feeding option for Jett.

We ultimately decided on the Gastro-Jejunal Tube.  This is a surgical procedure that places a feeding tube directly into the small intestine (the jejunum) by way of the stomach.  We were told that Jett would need to stay overnight for observation following the surgery.

Well, Jett's surgery was on Thursday…and we didn't get home until today (Sunday).  The surgery went fairly well, but Jett experienced and is STILL experiencing some complications from the procedure.

Here are a few things that our little guy has dealt with these past couple days:

• Possible seizures - a bad reaction to the anesthetic
• Horrible reaction to morphine
• Vomiting up bile and blood
• Bad tummy pain OBVIOUSLY
• Infection where his incisions are
• Deep suction procedures that require me to stick a tube down his nose/throat and suck out all of the stuff that he chokes on

I am feeling like a horrible mommy right now.  We seriously should have just kept the tube that went through his nose and throat.  I was under the impression that this G-J tube was going to make Jett's life much easier…umm nope.  

We will see what the next few days bring.  I really hope that Jett's little GI system starts working properly.  I feel so bad for him and SO HELPLESS.

I know I say this a lot, but Jett is one tough baby.  I truly feel like he has the spirit of a warrior inside his frail body.  When he opens his big blue eyes and looks around, you can see the heavens.  

At the hospital, he would be lying there somewhat incoherent and then I would touch his arm.  He would immediately lift up his arm and hold it there so that we could hold hands.  It was as if he was saying to me, "I'm okay mommy, don't worry."  

Seeing Jett go through this breaks my heart.  It makes me wonder WHY little children have to suffer at all.  

I am very grateful, however, for this experience.  I have become stronger than I ever thought possible.  Cody has become the best daddy and husband as well.

The other day, I received a sweet card from a former next door neighbor in Logan.  Their family has been through some extremely tough trials in this life.  I was so touched with what they had to say.  A part of the card said, 

"This is a time when heaven touches earth.  It's a time when family is EVERYTHING and the world becomes far less important.  Its a time when we turn to our Heavenly Father and submit to his will, because he knows the beginning to the end."  

WOW.

Festival of Colors and Free Hugs

Tiffany (my sis) and I got away one Saturday to experience the Festival of Colors.  It is a huge celebration and fundraiser for the Hare Krishna religion.  What a flippin good idea…and here is why:

1) You can get as messy as you want

2) You get to throw colored sand at random strangers

3) You get random hugs from random strangers (not sure I totally loved this part)

4) You get to jam out to 25 different versions of the song, "Hare Krishna"

5) You get to forget EVERYTHING bad going on in your life

It seriously was a great release for me.  Tiffany is the most amazing sister and friend.  Truly one of my angels here on this earth to keep me going!

Check out the video below:

Festival of Colors

A Small Confession

When I was younger, I was definitely aware of kids in my school who had "special needs". However, I was never taught what these special needs were.  For the most part, these kids were separated from the "normal" kids and so I never got the chance to truly understand.  From the outside looking in, I formed the theory that these kids were just born different than me and that it just took longer for them to learn things.

I was only partially correct in my thinking.  I had NO IDEA that these kids were fighting a courageous battle each day.  Not only did they have a disability to deal with, but they had to fight day and night with the MANY health concerns associated with that disability. Their disability may have had a name, but that name didn't tell me (at least) the underlying, and possibly life-threatening factors.  I was completely ignorant.

Looking back, I feel horrible that I didn't get to know these kids better.  My life could have been greatly enriched had I done so.  Inside every special needs child is a STRONG and HEALTHY spirit.  I see that everyday in Jett.  He wants SO bad to be a happy and curious baby, but his body won't let him.  Instead, he fights the ability to breathe and swallow correctly everyday.  He wants SO bad to be a chubby baby, but instead fights to gain weight on his frail frame.  He is not like other kids.  However, he is my JETT!  He has the sweetest look in his bright blue eyes that will melt your heart and the cutest cleft lip I have ever seen.  To tell you the truth, I am going to be sad when he has surgery on his lip.  I know I am going to miss it.  

Even though we have our rough patches and I wish so much that I could take Jett's pain away, I am so grateful to be his mother.  I feel very unqualified for this position, but I am learning as I go.  He is obviously here to teach me a few things about life.  I'm also so grateful for Cody.  He is seriously the most amazing dad who, amidst going to dental school, takes the time to be in constant contact with all of Jett's doctors, make a zillion phone calls to our insurance company and home health care, and of course, take time with Jett to make sure that he does at least 20 tummy rolls each day.  I couldn't ask for a better person to be on this journey with.

          Jett watching Little Einstein's...okay, maybe not watching, but he was listening!

         Kusaba, of course, can't be outdone.  He loves getting between me and Jett just to make sure  that I still love him.  Ha! This crazy dog keeps me sane most days!

                                  Me and Jett at one of his many doctor's appointments

Good Week...to a HORRIBLE night!

I should have re-thought my last post title...I knew I was jinxing myself.  Let's see, I posted about Jett having a good week on March 31.  Fast forward to that night.  Out of nowhere, Jett gets hit with a horrific cold.  I stayed up with him all night and ended up suctioning him out at least 20 times.  Now when I say suction, I don't mean with this thing.

That blue booger grabber is child's play.  This (pictured below) is what we use every time we have to suction Jett out...and it is LOUD!  Let's just say that everyone (who gets the privilege of sleeping at night) wears ear plugs.

Anyway, Jett and I (and the suction machine) hung out all night.  Jett also had a fever of 100.9.  In most cases, you should take your infant to the hospital if their fever gets in this range.  We opted to NOT take Jett to the hospital, but before you consider me a bad parent, here is my reasoning:  Here at our house, we literally have every machine that the hospital would use to monitor and sustain Jett (except an IV).  I felt comfortable keeping a close eye on Jett's oxygen levels and continually checking for possible higher temperatures.

Flash forward to today...Jett is feeling much better, but we still ended up in the hospital. GRRRR!  Luckily, today's visit was scheduled so it wasn't too bad.  However, with that said, I still LOATHE hospital visits.  Today's visit was with gastroenterology.  They had to sedate Jett, stick a camera down his throat and esophagus, and take pictures of his stomach.  AKA: Endoscopy  The doctors were looking for any suspicious anatomical anomalies that are causing Jett to be in pain, and thus, not gain weight.

Well, just our luck...the endoscopy results were completely normal.

Jett was SUCH a sweetheart today.  Here he is in his HUGE hospital jammies.

Unfortunately, Jett's weight has not increased in the past month.  We are now adding MICROLIPIDS to his feeding tube, which is basically pure fat...and still no weight gain.  Booooo.

Tomorrow, we have a consultation with a pediatric surgeon to discuss the possibility of Jett getting a jejunostomy.  This is a tube that is surgically placed into Jett's intestine.  We had mentioned this tube in previous posts, but the doctors ended up not wanting to place it because Jett is so small.  Well...they are looking into this again despite his weight and size.  Our hopes are that the jejunostomy (also called a GJ) will help Jett gain weight.  For right now, he still has the tube going down his nose and throat into his tummy.

To finish up today's medical lesson...here is a pic of what a jejunostomy tube is.  Enjoy :-)

Now, enough of this medical stuff.  Let's talk about Elder Rasband's talk in General Conference yesterday.  It was nothing short of amazing and was EXACTLY what I needed to hear.  So many people called and messaged us to say that they were thinking of little Jett while listening to the talk as well.

Elder Rasband's grandson was born with an extremely rare genetic condition.  He poetically spoke of EXACTLY what has been in my mind lately.

My favorite quote of the talk was, "Some of the sweetest spirits are housed in frail frames...Eventually the time will come when each spirit and body shall be reunited again in perfect form, both limb and joint shall be restored to its proper frame...then thanks to the atonement of Jesus Christ, we can come perfected in HIM."

I definitely know that Jett is one amazing spirit.  He is here to teach me God's plan and the teachings of Christ, such as patience, unconditional love, and service.  I feel so privileged to be Jett's mom.  Yes, sometimes it is really....REALLY....REALLY hard, but I know he was sent to Cody and I for a specific reason.  I am grateful for those angels in our lives (both living and from heaven) that surround Jett each day.  Cody and I are definitely not alone in this journey.