One Year Old!!!

Daxton turned one today!  And what a miracle he has been and continues to be!  Every doctor and specialist we see continues to be amazed at his progress.  He is completely off his seizure medication.  Hooray!!

We still tube about three bottles a day, but Daxton is now eating baby food and "people" food.  He especially loves pasta.  He has even started drinking a bit from a sippy cup.  We are actually starting the talks of taking out the g-tube.  Just talks.  He has a way to go before that happens, but the idea has been floated out there already.


Daxton still won't bear weight on his legs, and we have a cerebral palsy "clinic" appointment in January to discuss the possibility of support braces for his legs.  No one is overly concerned, but the clinic is an opportunity for a physical therapist, orthopaedic surgeon, brace specialist, and us, of course, to talk about what Daxton may benefit from at that point.  He is SOOO close to crawling.  He moves all over the floor, but not in any organized fashion.

Daxton continues to be a happy, happy little boy, although we are seeing a bit of attitude which is actually refreshing in a weird sort of way.  We know that he has a definite opinion about things!  I'm sure I'll change my view on that the closer we get to age two, but it's great to see for now! :)  He loves to give hugs and he smiles all the time.

There really is no explanation for his progress other than divine intervention!  We continually express gratitude for the miracle that is Daxton!

Last look at the baby curls!

Big boy, one-year-old!

Celebrity - sort of ;)

     Daxton had surgery last week to remove his adenoids.  They were blocking his airway by about 90 percent.  We are hoping this will help his breathing become easier in order to maybe help his bottle-feeding become easier too.  So far - no such luck.  His eating has gotten worse.  In fact, he refuses the bottle completely now.  But, he is still technically in the post-op period, so hopefully things will get better.  And, he will chew on peaches and avocados from one of those genius fresh-food-feeder thingies.  (This morning he had pancakes with his peaches!)  So, hopefully solid foods will become more and more enticing and we can ditch the bottle in a few months anyway.

   As a fun side note, we had a furry visitor while spending the night at UMC.  Those of you who know me know that I am not exactly a dog lover, but when they (meaning dog owner, camera crew, and reporters) brought this big Golden Retriever into our room to visit Daxton's roommate as part of a story about pet therapy, I couldn't resist the invitation to let Daxton check out the dog too.  Apparently something about the sick baby/nice doggy combo triggered a crazy amount of camera clicking.  Legal people came in, we signed some release papers, and voila... 

 we got our picture in the paper! 

Hopefully I'm not breaking any copyright laws by posting this picture.  What?  You think I actually read all those releases I signed? ;)

Daxton loved the dog, and, even though I'm still not rushing out to get a pet of our own I do think the whole pet therapy thing is great for patients of all ages. 

Shunt Buddies

When I started this blog, I vaguely remember NOT promising regular or timely updates.  In order to keep that promise, I have been very neglectful lately.  ;)  I'll work on that. :)

Way back in February, we were at a neurosurgeon appointment with Daxton.  A cute young couple with a baby came in so of course we started swapping stories.  Turns out their little guy has a medical history similar to Daxton's.  Thankfully, this baby's mom (I didn't ask permission to use their names) was smart enough to leave contact info with the office staff so we could keep in touch.  We have, and it has been great to share stories with another family with some of the same experiences.  Then in May, when they were back in town for another appointment, we got our little boys together.  Trent was working so we met at the fire station, and since this baby's dad is a firefighter too, it was fitting.

Those two adorable shunt babies were SO cute together!  Daxton was a little shy at first, but he warmed up pretty quick and started "chatting" with his new friend.  Thankfully (again) this baby's mom was also smart enough to bring a camera so we were able to capture the Kodak moments to share.

OK, this one is actually from my cell phone.  Yay, me, for taking a picture!  Daxton is using is sock as a telescope.  You can really see the shunts in this pic.

Checking each other out at the beginning.  Daxton's shunt is over-draining; the other one is under-draining - can you tell?  Poor flat-head Daxton!

Fingers ALWAYS in the mouth!!

That tuft of hair naturally grows longer over his shunt.  So dang cute!!

Daxton deep in conversation while big sis listens in.

Shunt buddies.

Best of luck to this sweet family.  Hopefully these little guys will stay this happy and healthy!

Under the weather

Daxton has been a little sick lately.  He isn't eating as well as he has been, but he is as happy as ever!  He giggles all the time!  :)  And apparently he has been having some pretty deep thoughts...

He's home!!

Daxton's got to meet his oldest brother, Trevik, when he came home from his mission this week!  Very awesome!  Daxton got to be an "E" in our family's "welcome home" lineup.  He played the part like a champ!! ;)

OK. You can't see Daxton's "E", but trust me, it was cute! :)

Oldest and youngest!

More Good News

Since I last posted, Daxton has been seen by all of his doctors/specialists again.  They all gave glowing reports.  The pediatric surgeon replaced the g-tube with a mic-key button that - after getting used to the new tubing - is much easier to use.  The last stitch that was hanging on and creating a little abscess situation finally came out so the site is looking much better.  I actually had to put the button back in after the doctor took it out so I could learn how.  I guess these things fall out occasionally and the hole will close within a couple hours if the button isn't put back in right away.  Very strange experience shoving a device into a hole in my son's stomach!  But Daxton didn't seem to mind, so I was OK!

Mic-key button.  We just hook the tubing to the button when we need it and then disconnect when we're done.  It is not nearly as bulky as the g-tube, and he can actually have a bath with this (as soon as we get the spare.) :)

The neurosurgeon said the shunt looks good and is maybe working a little too well.  We have to keep Daxton lying down when possible to keep the shunt from draining off too much fluid.   He will have another MRI in a couple months to check things out a little closer.  (I wish it was sooner.)  But, she was very pleased with how Daxton looks and acts.

The GI doc is very happy with Daxton's weight gain.  (In fact, Trent says we are done with that doc.  "We don't need to pay someone to tell us he is gaining weight!  We can see that ourselves!"  He's right!)

The speech therapist/feeding specialist said Daxton is doing "fantastic" and he continues to advance with the volume of his feeds.  He is finishing most of his bottles by himself.  Usually it is only the meds that go in the tube.  Very convenient!  We still vent with the tube during feeds so he can "burp" while eating to avoid pressure buildup (a few of the other boys are jealous!), but we can stop doing that when I feel Daxton is ready.  Or at least try and see how it goes.  The kids get quite a kick out of the tube "burps" and we even got an unexpected spray when Daxton sneezed during a feeding the other day!  Eeeww!!

The occupational therapist is also excited about Daxton's progress.  He is holding his head better and better.  He is reaching for and grasping his toys - and then they go straight to his mouth!  We are bumping up therapy to twice a week to start working on some more gross motor tasks like sitting and rolling and stuff like that.  Daxton really likes his therapy because it is basically just play.  It does wear him out though - he sleeps for hours afterword!

Playing at OT.

More interested in Mom's phone than the toy.

 The neurologist said Daxton is doing "amazing" and continues to be surprised with his progress.  He did agree with me that it might be a good idea to get an MRI a little sooner just to make sure that there isn't too much fluid being drained off.  (Too much draining can cause the lining around the brain to kind of "suck in" and pull away from the skull.  That can create bleeding.)  He is going to consult with the surgeon about maybe moving up the MRI, but only because the neurologist is admittedly paranoid and would rather be safe than sorry, not because he thinks there is anything wrong.  When we are talking about avoiding a bleed, paranoid is good!  I like paranoid!

So, we are again (and still) feeling very blessed with how Daxton is doing.  He continues to be a miracle.  He is such a happy baby and a joy to our whole family.

Miracles

When it was clear that Daxton was going to make it, we knew we had witnessed a miracle.  What I am beginning to realize more and more is that his miracle continues.  When a brain bleed as bad as Daxton's occurs, if the baby survives, it is very likely that the brain damage is so great, that major neurological deficits will quickly become apparent.  (And the left side of Daxton's brain is covered with scarring and damaged areas.  If I can get my hands on the scans, I'll try and post a pic for you medical types!)  The doctors explained the ramifications of all that to us, but I don't think the extent of what they were talking about really sunk in.  As we continue to have (tons of) follow up visits with specialists and therapists, I am learning just how unexpected Daxton's recovery thus far has been.  

Daxton is currently getting lots of therapies. He goes to occupational therapy once a week.  That frequency will increase as he is expected to do more, ie. rolling over, sitting up, crawling, etc.  (Thankfully it is just down the street.)  And a physical therapist and speech therapist/feeding specialist come to the house.  The speech therapist, Mark, is a friend of ours, so I called him when we got home from the hospital and told him Daxton's history and that we needed his professional help and referrals.  Mark and a developmental specialist came over within a short time to assess Daxton.  They were amazed.  Mark said based on Daxton's medical charts, they were not expecting to see him acting like he was acting.  They either expected a baby so stiff that he would need meds to relax enough to function, or a baby so limp that, again, he couldn't function.  Repeatedly we have been told that Daxton just doesn't fit his charts.  


When the pediatrician saw Daxton drinking from a bottle, he stopped in his tracks.  He was amazed that Daxton had the ability to coordinate the suck-swallow-breathe pattern as well as he was.  Later in that visit, he mentioned that when Daxton smiled at me the first time I would probably cry.  I thought to myself, "Yeah, it's always such a sweet moment when a baby smiles at Mommy for the first time."  I didn't realize that the doctor considered a smile a "maybe" for my baby.  Daxton smiles, SMILES!!, all the time. He has even giggled a few times too.  He is cooing and gooing like a baby his age should.  I didn't know that the medical professionals thought he might never do those things.

 

Yeah.  He made me cry. :)

Daxton is showing some right-sided weaknesses, and he will continue to receive occupational and physical therapy to work with that. He still needs the g-tube to finish feedings.   We have a lot of developmental milestones to reach.  But for now, we are so grateful that Daxton's miracles continue.

"God has not ceased to be a God of miracles." -Mormon 8:15

Just So You Know

I fully intend on writing more about this whole experience, but before it is too outdated, I wanted to share this short little video of Rachel playing with Daxton.  (Sorry it is sideways; I don't know what to do about that!  :)  I want you to see how Daxton is acting now!

Not Done Yet

We were all hoping that after Daxton got his brain shunt he would be more alert and eat better.  We were trying to avoid a g-tube.  Early on in the second hospital admission, Daxton had an upper GI scan as well as a barium swallow test.  These tests showed perfectly normal anatomy and no signs of reflux.  That was significant because it meant we could avoid a fundoplication procedure if a g-tube was needed.  The fundo is basically a tummy wrap that is supposed to make vomiting impossible, although I know a few kids with a fundo who still puke. Ugh!

Anyway, we knew there was nothing anatomically wrong, but Daxton still wasn't eating like he should.  There was really no way to know the cause - was he still in recovery mode (I know I would be), was he just a lazy eater, or was there some neurological deficit from the brain damage.  We wanted to give him every benefit of the doubt, but after hanging out at the hospital for another week, we had to face the fact that Daxton needed some assistance in getting the amount of calories necessary for adequate growth.  We were having to use the NG tube to finish his feedings and it really isn't practical to go home with an NG tube, especially because Daxton was really fond of trying to pull his out.

So, another surgery was scheduled.  The neurosurgeon wanted us to wait at least a week from the brain shunt surgery to lessen the chance of infection - scary!  The g-tube surgery was also about 1 1/2 hours. (It took a little longer than usual because the surgeon also removed Daxton's umbilical cord that he apparently was very attached to and circumcised him at the same time.  I know.  Poor kid.  But hopefully he won't remember any of this!)  A g-tube is a port directly into the stomach.  At first there is a kind of long tube coming out of his stomach that ends with the port in which to put feeds and meds (convenient for the nasty-tasting seizure med).  After a few weeks the tube is replaced with a Mic-key button that is a little more flush with the skin and not so cumbersome (hopefully).

We were getting a little nervous before surgery because RSV had just hit the pediatric wing of the hospital, and it hit hard.  We really wanted to get Daxton out of there before he got sick.  RSV is never a good thing, but we sure didn't want one more thing on Daxton's medical resume!!  They moved us down the hall, away from the "dirty" rooms (actually we were in five different rooms that stay!), and he was spared infection.  More tender mercies!  Daxton had the surgery, I learned how to work a g-tube, and once again we were released - all in time to be home for Christmas!!

Finally going home!  So skinny! :(

G-tube!

Take Two

One of the main concerns for Daxton when we got home was his weight gain.  He had lost about 1 1/2 pounds since birth and he was pretty weak from his ordeal.  When we went for weight checks, he still wasn't gaining.  The doctor suspected that Daxton was too weak to breastfeed efficiently, so I was told to pump and feed him with a bottle.  That way we could measure exactly how much he was getting.  Well, it turns out he wasn't eating near enough.  I was producing much more than he was taking, but he just wasn't interested in eating very much.  The pediatrician called a pediatric gastroenterologist who decided to admit Daxton back to the hospital for observation and consultation.  So, back we went.

Thankfully, we now had a great relationship with the doctors and a lot of the nurses so that offered a certain semblance of comfort.  Unfortunately, Daxton had to get another NG tube when we got to the hospital.  This one was quite a bit bigger and he gagged and threw up when he ate.  In fact, in the first 12 hours we were at the hospital, he had only one feeding which he threw up.  I was a little more than frustrated.  We had come to help him gain weight, and he was starving!!  (OK, I got that out!)  But, we had some needed tests done which helped give us some answers.

Daxton had his third MRI which determined that he had a LOT of fluid built up in his head.  Just a bit of medical background:  When there is bleeding in the brain, the blood breaks down and is absorbed by the body, but it leaves behind a different kind of fluid.  Ideally, the fluid drains out of the brain through the ports where normal cerebral spinal fluid drains.  However, the proteins from the blood can gum up the ports which is exactly what had happened with Daxton.  And he had a lot of fluid because of the size of the bleed.  His poor little brain was swelling and probably giving him a terrible headache and nausea too.  No wonder he didn't want to eat!  It was pretty obvious that Daxton needed a brain shunt to help drain off the excess fluid.  The neurosurgeon was fairly certain that if we could relieve the pressure in his head, Daxton would start eating better.  Surgery was scheduled for the next day!

Thinking about our baby having brain surgery was really not cool, but there really was no choice.  The surgery only took about 1 1/2 hours which is pretty amazing considering what was done.

"During a cerebral shunt procedure a flap is cut in the scalp and a small hole is drilled in the skull. A small catheter is passed into a ventricle of the brain. A pump (valve which controls flow of fluid) is attached to the catheter to keep the fluid away from the brain."  (Thanks to the howstuffworks website for the image and explanation.)  Because Daxton is still a new baby, his fontanelles are open and he didn't have to have the hole in his skull.  Everything is under the skin and the catheter that drains the fluid is snaked behind his ear, down his neck and chest, and then into his abdominal cavity.  A small incision is made in his abdomen to pull down the tubing and make sure it is in the right place.  Crazy stuff!!

I do not have pictures of Daxton right after surgery - way too painful.  His poor little face was so swollen and he was in pain.  Me no like.  As we were sitting in recovery with him, I wondered out loud to Trent about who our post-op/night nurse would be (since surgery happened during shift change.)  I hoped it was Bret with his pockets full of meds.  We got back up to PICU and sure enough, Bret was there waiting for us!  Tender mercies!!  Daxton was kept as comfortable as possible and was actually cleared by the neurosurgeon to go home the next day!!!  But, he still had feeding issues to deal with.  He was given a smaller NG tube that wasn't quite so gaggy, and we settled in to see how he would respond to the shunt.

Adorable and so peaceful!

LOVE this picture - about one day post op.  (And yes, that is my Nothing-Bundt birthday cake in the background!)

This picture is about two weeks post-op, but you can see the incision and the shunt pretty well.

First Time Around

That first night was a long one, of course.  Above all, I wanted Daxton comfortable and as pain-free as possible.  Thankfully, we had an awesome nurse, Bret, who was willing to accommodate my hyper-on-five mentality all through the night shift.  Bret kept his pockets full of meds - one with pain meds and the other with Versed (I made sure everyone who came in our room knew that Versed had a capital "V" as far as Daxton was concerned.)  All I had to say was, "Bret, he's acting agitated," and the next needed dose would be given.


A couple of days after the initial incident, Daxton surprised everyone by breathing "over the vent," meaning he was basically breathing on his own and the (very scary) decision was made to extubate him.  By taking him off the ventilator, we were asking Daxton to "declare" himself, to show whether or not he was going to fight to live.  They turned of the Versed (Aaaaaahhhh!) and took out the tube.  After holding my breath for a while, I realized that Daxton was not holding his.  He was doing great, something that was unthinkable just a couple days earlier.


A short while later, we were able to start giving Daxton some breast milk through the NG tube in his nose.  That made me feel a lot better because I knew he had to be starving.  Slowly we upped the amount he was getting and eventually he was given the chance to show that he could coordinate the suck-swallow-breathe pattern necessary to eat, so the tube came out.  That was another relief because he loved to get his finger right into the little space that wasn't taped down and try to pull that tube right out.  He almost succeeded a few times!  I can't even tell you what I was feeling as I was allowed to hold and feed Daxton again.  Sure, he was still hooked up to monitors and tubes and all that, but I could cuddle and kiss him again - cords and all!

In momma's arms again, at last!

 This is to prove that I let Trent hold Daxton once in a while too!

Finally, the day after Thanksgiving, we were allowed to go home.  Upon release, the doctor said that they wouldn't be surprised to see us back for a brain shunt, but that Daxton had way exceeded everyone's expectations for him.  And, the credit was all being given to the power of prayer and the grace of God.  There is really no other logical explanation.

So, we went home a little more mindful of every baby movement, noise, and gaze.  OK, a lot more mindful.  But, very grateful that the car seat which had sat empty in the corner of the PICU room for nine days was now cradling our sweet little one home.  We worship a God of miracles who still shows that wondrous power in our day!  Praise Him!

Daxton

Yes, it's true. I've given in and started a blog. The Apocalypse might be closer than you think! ;)

I do sincerely appreciate those of you who have urged me to write about our little Daxton. I have been humbled by the interest in him and his well-being, and especially by all the prayers on his behalf, so I figured it was the least I could do to blog about his progress. I make no promises as to how often I will post, or the quality of those posts, but here goes! I admit I'm not sure of the best way to go about this, so I'll just dive right in with Daxton's history.

Daxton was born on November 8 weighing 9 lbs. 2 oz. (That makes him only the 5th heaviest of our 9 children!) It was a nail-biter of a delivery that the doctor admitted put a few more gray hairs on his head! But calling for NICU ended up being unnecessary and Daxton went home with me apparently healthy.


At his first pediatrician appointment, Daxton was a little jaundiced. No big deal; a few of the other kids have been yellow-tinged too. On the third day of checking levels however, Daxton's bilirubin had continued to rise. He was acting like he was in pain, was not eating, and had thrown up a few times. The doctor decided to admit him to the hospital. After several attempts at starting an IV, Daxton got some really cool sunglasses and was settled in under the bili-lights.




Well, he was supposed to settle in. Actually, he got more and more agitated, threw up several more times, and that night basically went from bad to worse. By the next morning, he was alternating between posturing and screaming in incredible pain. At one point the nurses had to untangle his fingers from my hair. It was pretty much the most emotionally painful night/morning of my life. I was totally helpless to comfort him and I was sobbing by the time shift change occurred in the morning. As I pleaded with the nurses to do something for his pain, Daxton had what looked to me like a seizure. The nurse immediately took him and started hooking up monitors. Then he had another seizure. They whisked him away to the ICU section and to do a CAT scan.


Trent went down to CAT scan with Daxton knowing what they were looking for. I was blissfully ignorant and just grateful that he was being taken care of. Trent came into the room a while later in tears and led me to where the doctor had pulled up the CAT scans. Daxton had had a massive brain hemorrhage. It was an intraventricular bleed that had spilled out into the surrounding brain tissue - a lot. The doctor was very blunt and basically said we had some tough decisions to make. The likelihood of Daxton dying was very real and survival would most likely mean a vegetative state. For the time being, he had been sedated and he was on a ventilator. As tough as that was to hear, I was honestly just so grateful that he was not struggling in pain. (I LOVE VERSED!) We were led down the hall to the PICU and to see our 10-day-old baby on life support. (The beanie baby turtle was used by the respiratory therapists to hold Daxton's arm or the tube or whatever right where it needed to be.)

 
That day was a whirlwind of visits from PICU doctors, a neurologist, a neurosurgeon, and respiratory therapists, as well as our awesome nurses. Our good friend Troy Tuke was at the hospital almost immediately and he was followed closely by our stake president, Pres. Davie, Bishop Holland, and my dad. Troy's wife stopped by our house, while my mom held down the fort, and picked up the little white outfit that all the boys have worn for their baby blessing. Since he obviously couldn't wear it, we hung it on Daxton's little bed while Trent and the other priesthood holders gave him a name and blessing. Yeah - emotional to say the least.

We weren't exactly thinking about pictures at the time of Daxton's actual blessing.  This was taken a few days later when he was off the ventilator.

As we sat down that night to try and absorb everything that had happened, we were amazed at the peace and comfort we felt. We knew that Daxton was in the Lord's hands. We knew where he had just come from and where he would go if he passed on. We know that Daxton is sealed to us and that he is ours forever, no matter what happens. We know that the power of the Atonement is real, that healing and wholeness are possible - whether now or in the eternities. We know that the promise of the resurrection is more than just wishful thinking. We know that the Comforter brings real comfort and peace "which passes all understanding." While I was not OK with Daxton's current state, I was perfectly at peace with the situation, regardless of how it played out. What a blessing to have a testimony of true doctrine.