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.  

Good Week

Jett has had an amazing week...probably all thanks to a new medication that calms his overloaded nervous system, but we will take anything we can get!!

 Here are some Jett highlights:
1) He can sleep more than an hour without waking up in pain!
2) His hands are relaxed. Jett usually looks like a little boxer because his hands are always clenched in fists.
3) He knows who his mommy is! In addition to that, he may be the ONLY one who likes my singing voice.
4) He gave me his first social smile the other day. We love that wide smile.
5) He loves tummy time, which we never would have thought possible.
6) He doesn't have to be on oxygen!! Jett's oxygen saturation levels are showing in the high 90's, which is awesome. I don't know who is more excited to lose a tube...us or him.

 Thank you to everyone who has kept us in your prayers. Even though the highlights above may seem small to you, they are HUGE to us! We have felt the comfort of your prayers and can feel angels surrounding us constantly.

 On Monday, Jett goes in for an endoscopy. We are hoping that the doctors are able to find the cause of Jett's continual abdominal pain. More updates to come.

 Visual therapy made Jett one tired boy the other day.  He fell asleep on his OWN...this never happens!

 This is Jett's BATH face...very concentrated!  His baths are definitely his favorite part of the day.

Look at that top number...It is Jett's oxygen saturation level.  He no longer needs his oxygen cannula, which means one less tube!

Broken-hearted

I'm not sure where to begin...in fact I am sick to my stomach as I write this. Our sweet, little Jett man is still sick. He has been to more doctors appointments than I have been to in my entire life. He is so brave. To make a long story short, we received a THIRD opinion from a neurologist on Jett's condition. We met with Dr. Francis Filloux, the head of the neurology department, at Primary Children's Hospital last week. Our worst fears were confirmed. Dr. Filloux diagnosed Jett with Pontocerebellar Hypoplasia. You can read about the condition here.

 It basically means that Jett's underdeveloped brain stem and cerebellum affect his entire body. This includes functions critical for life, including respiration and digestion. Besides not being able to walk, children diagnosed with this condition do not hit major milestones like sitting, standing, or even talking. The worst part, is that most infants do not make it past the age of two. There are only a couple kids who have made it to childhood.

 Hmmmph. Nothing like a blow to the stomach.

Cody and I have known this prognosis for some time now, but have waited to tell our family and friends until we knew that this was a definite diagnosis. It is obviously a tender time for us right now. The world feels as though it is going in slow motion. We have all been through a roller coaster of emotions these past four months. Unfortunately, I know that this isn't even the worst of it. Times are definitely going to get harder before they become easier.

What I (we) are feeling right now:
*  Our hearts are broken...not just broken. Shattered.
*  Angry....why us??
*  Scared. The nights are the worst time for me. My imagination and thoughts seem to be amplified. I have a constant pit in my stomach. Every time Jett coughs and chokes (which occurs many times throughout the night), I feel like this could be it.
*  Exhausted
*  Helpless at times. I wish I could just take Jett's pain away.

 Yet, at the same time, I (we) feel:
*  Comforted.
*  Grateful for our families who have stepped in and helped watch Jett. He requires around the clock care and they have been there to save us when we need sleep or a break. Also grateful to those who have written us notes of encouragement, dropped food off at our house, and those who have said prayers in our behalf.
*  Full of LOVE for this amazing little spirit

 We have definitely learned (in all of this) that we are not the ones in control. Heavenly Father has a divine purpose for Jett. His time on this earth was meant to be short. I feel so privileged that Jett chose Cody and I to be his parents. I am going to do my best to take care of him the best I know how. I am not looking forward to the day when Jett leaves us. I don't like the unknown and the range of time that the doctors have given us really doesn't make things any easier. It could happen next week or it could happen in ten years. A lot of people have asked us what they can do to help. Please just pray for Jett's COMFORT and for us to be strong. Also...talk to us. We have found that by talking about our situation really helps us to sort out our emotions. Cody and I are still the same fun-loving people as we were before. We still find humor in life. In fact, the other day the doctor was testing Jett's reflexes. He used his little hammer and hit Jett's knee. The second he did it, Jett farted really loud. We couldn't stop laughing. That same appointment was also when we found out what Jett's true diagnosis was. I think Jett is trying to keep us laughing so that we don't completely break down. We LOVE him so much and are so thankful for the tough lessons that he has taught us about life and love.

Spring Break

This week was supposedly my first spring break of dental school, unfortunately it wasn't much of a break at all.  Since I wasn't at school all week Tennille let me take shifts during the day with Jett.  Usually this is accomplished by Tennille and one of our moms, but since I was around I picked up where the moms usually fill in.  My mom was still around though, and I'm glad she was.  Without her I don't think I would've ever had a chance to shower, go to the bathroom, eat, etc…  I don't think we have ever explained Jett's daily "routine", and thats because he has no such routine.  Everyday is a guessing game.  I didn't know all that was involved with Jett during the day when I'm at school, until this week.  Tennille is a total SUPERSTAR to do this all day, every day and has my praise, & respect!

Although I didn't get much of a spring BREAK, I actually kind of enjoyed spending some time with Ten and Jett (at least for the first part of the week).  Unfortunately it was a huge roller coaster week with some Jett experiments that have been un-fulfilling so far.

Last week Jett had a PH probe done to check how severe his reflux actually was.  Ten and I have consistently begged for this test because we never believed he had reflux, and his symptoms were related to something else.  The test came back and they said that he doesn't reflux anymore than a regular developing baby.  Other than a big "told ya so" to the doctors, the test helped us decide that we would want to replace his NJ tube with a tummy button.

Monday: Doctor for a weight check and Vitamin B12 shot (weekly injection for 4 weeks).  Jett luckily gained weight again this week.  Unfortunately it was only 2 oz in 7 days.  We were hoping he would weigh 9 pounds, but were a little disappointed.  Hopefully next monday.  Currently he is 8 lbs, 14 oz

Tuesday: Went back to the doc to remove his NJ (feeding tube) and replace it with a NG (another feeding tube, google them if your curious).  He is scheduled to get a tummy tube (feeding tube surgically placed through your belly directly into your stomach) on March 29th.  Since he has not had food in his stomach for 9 weeks now, we wanted to see if he could tolerate it before we had the surgery done.  Currently Jett's feeds are going at 1 oz/hr for 20 hours a day.  This is pretty inconvenient, so the goal was to eventually get him to do "bolus feeds", where we feed him 3-4 oz's in a short period of time (like a healthy baby would eat, just through a tube instead).  To reach this goal we had specific instructions on how to ramp up his feeds to get him to that point.  To make a long story short, he is back on continuous feeds for the time being and most of my clothes smell like puke.
The highlight of our day happened on the way home from the doctors office.  We got rear ended while we were stopped at a stop light.  I pulled into the turning lane to get out of traffic, and started to get out of the car when I see that D-bag that hit me take off.  I hopped back into the Scion to try and get a plate number.  Unfortunately, our little box of fury seems to have been neutered and we couldn't quite get close enough to get the plate number.  After an intense 5 minute slow speed chase through some neighborhoods, we decided that with Jett in the back seat it wasn't a good idea to keep chasing them.  We turned around and headed home.  As we turned on to the main road to head home, we happened to pull right behind our compadres that we were chasing.  So we got their plate number and called it in.  On our way home we happened to drive past the place that the accident happened.  I saw a few pieces of plastic on the ground, so I decided to go pick them up in case they were off the offending car.  As I bent over to pick up one particularly large piece, I turned it over and this is what I saw.

3 lessons this teaches us:
-Don't do a hit-and-run
-If you do, make sure you're in a car that won't fall apart
-If your car will fall apart, and you decide to run, expect to get made fun of (and get caught)…IDIOT

Wednesday: Jett was especially fussy today.  He was really wiggly, whiney, wouldn't ever sleep, and was  in pain all day long.  We had a prescription (another experiment form the doctors) that we were waiting to fill until later in the week, that is supposed to calm him down, and bring his nervous system down a notch.  We decided to fill the prescription and start him on it that day.  It made him sleep really well and seemed to be working.
On a non-Jett related note.  We put a deposit down on a Townhome that we are buying in Omaha.  Through all this craziness, I sometimes forget that I am moving in less than 2 months.  Ten will be here until at least September, but I know she will have lots of support here, and move ASAP.

Thursday & Friday:  Other than a couple episodes of puking, Jett did really well these 2 days.  We were thinking that this may be the right medication for him.  I even had my first chance to cuddle with the little guy on friday.  When he is calm, not arching his back, or in pain he can really melt your heart.  He doesn't really smile yet, but you can see him trying sometimes and it is the sweetest thing he could possibly do.  I don't think he has had much enjoyment so far in life yet, so to see him relax and breath calmly is huge to me.  It gives me a little bit of hope that we get him out of misery and help him start to grow, learn, smile, laugh, and enjoy life as much as he can!

Saturday: After a couple of good days, anyone can predict what would happen next.  A horrible, stressful, finale to the week!  Ten woke up with Jett at 6 am and he started having seizure like symptoms.  He has had these before, and we actually had an EEG scheduled for next monday to check for seizures.  Usually we just ride them out and he is back to his normal self after a little bit.  Tennille went back to bed and I took over.  By 11 am he still had these seizure symptoms.  This was going on 5 hours.  I called the neurologist at PCMC and discussed the situation with him.  He told me to come up so they could monitor him.  Ten hadn't had much sleep the night before so I didn't wake her, and just went to the hospital with my dad.  Having a bunch of tubes coming out of your kid really helps you in an ER situation.  I walked in the doors of the hospital, didn't even tell them why I was there, and they had a nurse shuffling me into the back before I could even speak a word.  I bypassed the check in, the initial screening for vitals, and assignment of an ER room, and went straight back.  Funny thing is that Jett wasn't even seizing when they were rushing me around, he was being normal (for Jett).  But his normal is head hanging, back arched, and eyes rolled back… oh well, I'll take it when life throws you a bone!  Anyway, they ended up sticking him with an IV ( he is amazing with needles, he has never cried in the many times he has had an IV), running some blood tests, then running an EEG on him.
An EEG monitors brain activity and helps to determine if someone is having seizures.  They work best if you can catch a seizure episode, but that idea is rather counter-intuitive given the process of placing the leads.  The EEG consists of 23 leads that get stuck to Jett's head, then they have to stay on for at least 30 minutes while they monitor him.  It would be hard to place them on a calm Jett, but since he was in and out of these "episodes" it was a whole different story.  By this time Tennille had woke up and come to the hospital so she was there to help. To place these 23 leads we had 4 people, 8 hands, 3 binky's, a whole lot of sugar water, and a couple of Valium for Ten and I afterward.  Just imagine catching an 8 pound trout, trying to hold it down while it is flopping, and sticking 23 pieces of tape to its slippery skin, Thats kind of what it was like.

This poor kid can't catch a break… He is such a fighter though

                                  

After all that, the doctors said that these weren't seizures.  In addition I asked him about infantile spasms, which we have been worried about, and he said he doesn't have those either.  They attributed all the seizure-like symptoms to his irregular nervous system.  I'm not a doctor but I have to wonder if these (and Jetts puking) are side effects of the meds he started on Wednesday.  The docs sent us home with another prescription to try and help bring his nervous system down a notch.  That brings him up to 6 medications he gets every day. Yay!!! a new Jett record.  Needless to say Saturday was a rather stressful one.  We are now getting used to going to the ER, but usually its to get his NJ replaced not for something like this.  I'm sure we will be there many more times, but hopefully not in this fashion.
Saturday had been a pretty rough day, and Jett was on his new meds and really had calmed down.  My parents are amazing and took Jett and kicked us out of the house for the night so we could do something.  We had an awesome dinner and some alone time, it was a great finish to another long week.

Now, my real spring break starts tomorrow morning when I get to leave to go to school again!

Pictures of "Bubba Loo", aka Jett

 This week has been a good week!!  Only one (LONG) doctor's visit at the hospital.  The results came from the pH probe (performed from Monday to Tuesday at Primary Children's) showed that Jett's symptoms are NOT related to his acid reflux.  In a way, this is good, and in a way, it's not.  It more or less means that a lot of Jett's pain is neurologically related.  His brain abnormalities are affecting his bodily functions, including digestion and respiration.  Jett will undergo surgery on March 29.  He will finally get a tummy button.  The big bonus of the pH probe is that we determined that Jett doesn't need the Nissen Fundoplication surgery.  This is the more invasive surgery where his stomach would be wrapped around his esophagus.  Thank goodness!  One less surgery.

My parents were down here again to help take care of the little man.  I don't know what I would do without them.  They have dropped everything to come down each week to make sure that Cody and I are well rested and taken care of.  So far,  no feeding tubes have come out this week and Jett seems to be gaining weight.  We will find out if he has gained more tomorrow at the next doctor's appointment.  We're hoping for 9 lbs!!

Jett hanging out with Grandpa Watts

Jett's last weight check on Monday, March 5.

                    Mr. WIDE eyes!                                                         Jett loves his baths...especially being
                                                                                                          wrapped up in a towel afterward.

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.

Long Week

Talk about 1 long week.  I don't know where I am finding time to write on this blog, I guess its a well needed break from studying or binky holding.

First off, in addition to Cerebellar atrophy Jett has some serious pain issues.  We think everything is related to his digestion system, but who knows.  Ever since he was born, he spends about 90% of his time awake in pain.  The pain is very apparent to us but apparently not to doctors.  He spends most of his days tensing up his stomach muscles, arching his back, trying to fart, and screaming his lungs out.  This to me seems maybe like he is having a problem with his GI tract.

When we were in the hospital last month we brought up this issue.  They automatically diagnosed him with Sandifer's syndrome (severe acid reflux) and started treating him for it.  They never ran any actual tests to verify sandifer's, and they definitely didn't look into any other possibilities of where the pain is coming from.  The drugs he was on for the reflux never seemed to help very much, so we kept insisting that it wasn't reflux but something else.  Doctors always assured us that it takes a couple weeks for the drugs to work, and it is definitely Sandifer's. Well it has been 1 month since his extended visit to PCMC and he seems to be in more pain than ever.  Tennille and I have been experimenting with different things that we can do to eliminate the pain (switching from breast milk to soy formula, then to alimentum), but we have been trying to get our pediatrician to get us into the GI doc.  She keeps insisting that it is reflux and we don't need to see a GI doc.  Finally, that wasn't an acceptable answer.  Tennille yelled at her, then the doc finally gave in and made us an appt for next week.  In addition to our 8 other doctors appt's next week, it will make for another long week; but hopefully we can start getting some answers.

Ok, onto our long week.  I was scheduled to have 5 tests this week in school, so Tennille thought she would be nice and go up to Logan for the week.  That way I'd have an opportunity to study and hopefully do ok on my tests.  

Problem 1- On Tuesday, Tennille took Jett off his feeding tube for the drive up to Logan.  When she arrived and put him back on his feeds, she was terrified to find out that the tube was clogged.  Oh well, no big deal.  She figured she could go to logan regional and get it unclogged and everything would be ok.  NOPE  Apparently Logan Regional doesn't employ any REAL doctors.  Not one doc could place an NJ (goes into the investing) tube, and even more frustrating no one was willing to place an NG (only goes to the stomach) tube in a baby.  After 6 hours of piddling around they told her that she would need to drive to Primary children's in SLC to get it unclogged.  I met her at the hospital around midnight and we spent the next couple hours up there.

Problem 2- When they placed the new tube on tuesday they couldn't get it to cooperate and they left it in the stomach (rather than the small intestine), and told us to observe him to see if he was refluxing/aspirating with the tube where it was.  After a day of watching we determined he was refluxing, so Thursday night we had to go back to PCMC to get the tube pushed further into his gut.  So we spent about another 4 hours up there

Problem 3- Friday rolls around, Tennille comes to pick me up from school.  As I get in the car she says that we are going over to PCMC because Jett had pulled his feeding tube out.  So we spent another 3 hours there.

Problem 4- Sunday: After holding Jett's binky in for about 5 hours straight we needed a break.  We put him down for about 3 minutes to go to the bathroom.  I heard him crying so I went in to hold his binky in his mouth again.  When i got there, Jett had a kung fu grip on his feeding tube and it was pulled about half way out of his nose.  Tennille and my mom headed up to PCMC this time and spent another couple of hours there, getting another feeding tube

Problem 5- He has no suction because of his cleft palate, and the only thing that soothes his tummy pain is his binky… so, someone is physically holding in his binky for about 12-14 hours a day.  Is this all parenthood is, Binky holders???

Problem 6- remember I mentioned that I had 5 tests this week.  If I'm lucky I may have averaged a C on all of my tests.  I haven't had anything below a 93% on anything since I decided to be a dentist, so obviously I'm a little bit pissed about this!  At this point I'm honestly not sure if I can do school right now. Jett is sooooo time consuming, that the second I walk in the door there is a 0% chance to get ANY studying done.  I think I'll see what this weeks doctors appt's bring, but if there are no answers I may have to take some time off of school to get things sorted out

Problem 7- I bitch and moan a whole lot, hence why I'm writing this blog.  Unfortunatley, it makes me feel better.  so even though its a problem, too bad!

I'd show some pictures of Jett, but he looks just the same as he did when he was about 3 weeks old.  he is now 12 weeks and has only gained about 1.5 pounds total

Sorry for my rants

A little story about a boy named Jett

As I'm sitting here in the middle of the night typing one handed because little Jett man is sleeping in my other hand, i figured i would copy and paste a couple of thoughts i have recorded over the last few weeks.
These are just thoughts I jotted down, so bare with the bad spelling/grammar.

The last little bit has been quite the rollercoaster ride, actually that is not a good comparison because there hasn’t been many ups, only downs.  1/19 we took Jett to the dr. because of his hysterical back arching.  She prescribed some Zantac because he “probably” has acid reflux.  Well, On 1/20 we took Jett to the instacare because Tennille didn’t feel that he was breathing really good, and that he was getting a cold.  They referred us up to Primary Childrens because his O2 saturation level was in the mid 80’s and he wanted them to observe Jett.  Once we got checked in to the ER they started drawing blood, placing IV’s, and testing Jett for all sorts of problems.  They eventually told us we’d be here for at least the night, so they were admitting us and going to move us up stairs.  Before we went up we met the attending Dr. for the infant unit, Dr. Brinton.  We talked with her about Jett and I voiced my concerns about his arching in addition to his cold symptoms.  I told her that his eyes don’t track, he is very colicky and in pain frequently and he is also very jittery, and I was concerned about cerebral palsy.  She looked him over and told me that CP wasn’t the problem because he is able to relax.  Well we moved up stairs and the nurses took over and told us to go home and get some rest.  When we showed up  the next morning there were 6-8 doctors/nurses around his bed for rounds.  It was kind of like arriving at your house and the fire trucks and ambulances are out front… we thought there was a major problem due to all the people there.  I guess that night was a really rough night and the nurses were worried about his arching, so they called in some additional dr’s.  Those dr’s decided that he was suffering from severe acid reflux and they referred to it as Sandifers syndrome, they also mentioned that the neurology team would like to come check him out as well.  They ordered a PH probe for the next day to decide if it really was reflux or not.  Right before he was supposed to start the PH probe they decided that his symptoms were in line enough that they were convinced it was reflux and the PH probe was not necessary.  They started treating him with double Zantac to address the problem.  At that point, I was pretty worried about some neuro problems so I started requesting an EEG to see his brain activity.  They kept insisting that he has Sandifer’s  and no further tests were necessary.  Unfortunately I was concurrently learning about seizure disorders as well as neuroanatomy, so I felt that with my little knowledge there was reason to at least eliminate the possibility of any neuro problems, but the doctors continued to refuse.

            After the PH probe was cancelled, they decided that they wanted to do a swallow study to determine if he was aspirating (in addition to his other problems, he had lost weight in the last week).  They decided (still can’t convince me that I saw aspirations during the study) that he aspirates when he eats regular breast milk as well as thickened milk.  This, coupled with reflux made them decide to place an NJ tube (feeding tube that is inserted in the nose, passes through the stomach, and the 1^st and 2^nd parts of the small intestine and ends up in the Jejunum).  Initially we were rather ok with this because of his recent weight loss, hopefully a couple days of a feeding tube would get him right back to where he needed to be, right???

            A few days after he was started on Zantac, it was not helping with his back arching and obvious pain that he was experiencing, so they decided to finally call In the neurology team.  Neuro suggested that we take an MRI and the genetics team also wanted to get a spinal tap to check his CSF.  A few hours later Tennille was signing our sweet little boys life away for the anesthesia (he needed to be perfectly still for the MRI, so the had to drug him), luckily they were able to do the spinal tap after he was out, so he didn’t have to feel the pain associated with that.  They did the MRI and took Jett back to his room.  The Dr. earlier in the day told us that we would get our results shortly after the MRI, so we waited there for hours before we were finally told that the neuroradiologist wouldn’t be in until the next evening. What??? Our sons fate is on the line, and we have to wait for 24 hours… do they know what the imagination can do in 24 hours.  The sweet attending Dr, Dr. Brinton, knew how we were feeling so she wanted to talk to us before we left for the night.  I think she was trying to do the right thing, but she told us, “All I can say is that the MRI is abnormal.  Jett’s cerebellum is not the correct size.  But I can’t tell you more than that because I’m not a radiologist”

            You can imagine the feelings that Tennille and I were going through for the next day, it wasn’t much fun.  For some reason though, I knew all along that there was something wrong and the news of the MRI didn’t shock me.  The things Jett does are not normal, and I had lost a lot of sleep the past couple weeks worrying about what could be wrong.  The time had finally come, our team of Dr’s assembled, and came to bring the news and answer questions.  They told us that Jett’s cerebellum is much smaller than normal. The cerebellum controls fine motor movement, balance, muscle tone, and many other things.  They don’t know if Jett will ever walk.  They don’t know if his cognitive functions will be affected.  He also has a smaller than normal brain stem.  The brain stem controls many things but most importantly, your respiration and heart.  They said right now his brainstem seems to be doing everything that it is supposed to do, and they hope that it continues to.  They also said that his optic nerve is in place and it appears that everything neurologically was connected, but they had made an appointment with the eye doctor because they don’t know if he can see.  Tennille bluntly choked out the question Does this affect his life expectancy? And they answered that they didn’t know!

            Wow… that’s kind of hard to stomach.  A week ago we thought we had a perfect baby boy that had a cleft lip/palate, now we don’t know if he will ever walk, see, or even grow up.   We went home that night and cried more than I ever thought possible as we wondered what would become of our baby boy.

            The next couple days in the hospital were pretty lifeless.  I remember that Jett lost weight even though he was on the feeding tube. Lots of doctors, and empty promises of sending us home.  They finally ordered the EEG that I had requested early on, but ended up sending us home a few days later without ever performing it.

            Since we have been home from the hospital Jett’s weight has started to increase slightly, at least were moving upward not down, and he has been to multiple doctors appointments.  The first piece of GREAT news that we got was that the internals of his eye are all normal and he should be able to see.  The dr told us to give him a break, he isn’t tracking normally because he has had so many other problems that his eyes haven’t been a big concern.  Next we got a kidney ultrasound.  He has what they call a horseshoe kidney, and hyperuresis.  The kidneys are usually 2 separate bean looking things but a horseshoe kidney means they are connected and it forms a horse shoe.  Most of the time this doesn’t cause any problems, and lets hope this is the case for Jett.  They hyperuresis means that there was a lot of urine in his kidneys.  They don’t know why, or if it is bad, so we will follow up in a few months to see if it has resolved by then.  Lastly we went to the cardiologist.  They did an echo, heart ultrasound, and an ECG.  The Doctor said that his heart is healthy and normal (hallelujah!!! Something works right)  His cleft lip surgery was scheduled for February 21^st but we obviously had to change it until he is bigger and healthier. 

            Now that we have had a little time to digest the situation; these are our current thoughts.  This can’t change who we are.  We will still continue to do what we love to do and what we have done in the past, it may just be harder to do those things.  Jett has high expectations placed on him, but likewise for Tennille and I; Jett is expecting a lot from us.  We understand he is going to have some hurdles to overcome, but we are going to push him to amaze us and everyone around us with what he can do. 

Thanks so much to all of our friends and family that have taken care of us with dinners, cookies, date night, games, adult conversation, etc…  Everyone has been so nice and supportive of us.  I'll try to update this as Jett continues to progress, but seeing as we (maybe mom and dad too) are about the only ones that read it, the updates may be few and far between

Welcoming Baby JETT!!

Story to come...

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Dental School and other ramblings

Since I have never written in a journal, I guess I'll put something up here, so in 4 years I can remember what I thought about the 1st year of dental school.

Currently we are about half way through the first semester (which equals 1/16 through DS).  Our first year is spent at the med school at the U of U, then our last 3 years are out at Creighton in Omaha.  Since we spend a year with the med students, for all intents and purposes that is what I am right now.  After my first day of class, I was having second thoughts on giving up my pilot career to go through 4 more years of school.  Luckily, things have got much better since that first week, and I feel much better about the decision.  On that note, I am REALLY glad that I choose to be a dentist not a doctor... can you imagine up to another 8 years of training post med school graduation!!!

On top of a busy school schedule, life at home has been pretty busy as well.  We opted to live with my parents while we were down in SLC, to save us some money over the 9 months that we will be here.  It just so happens that my sister and her family (4 kids) sold their house and needed a place to stay until they found a new home... so they also would be staying at my parents house.  Well if you can't do the math, that is 10 people living under 1 roof... Kinda hectic.  Needless to say, I usually stay at school to study, so I'm there from 8am-8pm.  So 10 people living in one house is definitely hectic, but its been pretty cool. I've got to hang out with my nieces, learn more about my brother in law, and focus on not spitting logies on my sister like I did growing up.  They just found a new house and are moving this week, and I'm not quite sure what we'll do with them gone.

On a different note, Tballs is definitely pregnant.  She has recently gained the nickname "waddles".  I've been kinda upset about the timing of this kid thus far (or the fact that we are having a kid period), but once he started to beat t-neal up from the inside out, its kind of cool.  I guess she doesn't like it very much, but its pretty rad to see the little kid kicking and punching... It kind of makes it a little more real I guess.

While I'm on the subject of Tballs...I guess I'll mention that she started taking flying lessons.  I'm pretty stoked for her... well, because she is doing something I love.  She says it because she wants to do something out of her comfort zone, plus if we are going to eventually take our family on trips in our own airplane someone else needs to know how to land, in case I pass out.  Whatever the reason, I think its awesome that she is getting over her quasi fear of flying.  hopefully she will solo before she has the baby, then finish up her license before we leave for omaha.