Sunday, January 23, 2011

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I fully intend on writing more about this whole experience, but before it is too outdated, I wanted to share this short little video of Rachel playing with Daxton.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!


video

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.Craniotomy for cerebral shunt

"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 li
ttle 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 weighin
g 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 de
al; 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 loo
king 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.