Thursday, October 14, 2010

MiddleFork of the Salmon, and random flotsam

Ok, granted it's been a while since I posted but it's because we have been busy, and I'm lazy, and no one really cares anyway. I'm sure there are a few of you out there that are eager for a Kaya update so I'll give you that first and then if you want to stop reading you can.
Kaya is doing very well. She has doubled her weight to 10 lbs. The Dr's looked at her lungs and said don't worry, they looked at her heart and said don't worry. She passed her hearing test, don't worry. She still has the facial palsy, we have yet to hear back on the Genetic testing. I emailed the Geneticist today looking for answers. We worry. I blessed her this past Sunday. For you non mormon readers I gave her a blessing but no "Christening" as Mormons don't buy into the "Babies go to hell if not baptized" theory. It was a beautiful day. Kaya wore a dress made specifically for her for this day made by Grandma Karen. I'm not much for fancy clothes and I don't get too emotional about dresses but this dress was phenomenal.
Yeah, we love her

Me and my girl
Many thanks to everyone who made this a special day for us.

Looking back on the last few months we really have had a great end of summer.
Took the boys and My dad and Greg and Tapeaty backpacking in the Uinta's

Learning the art of Flyfishing

Noah practicing his 4 count rhythm between 10 and 2

This was Max's first year playing Soccer. It took him a game or two to figure out the point of the game but then his competitive fire came out and he kicked ass.
Don't be fooled by the smile, he is a fierce competitor.

Took some family photos for the Christmas Card

Rode the ponies at least once a week.

Took Kaya on her first run in the jogger

We took Grandpa Brian's boat to Strawberry for the day but we forgot to take the camera with us. It was such a beautiful day, the Aspens were Golden, the sun was warm and the cutthroat were biting. We caught this guy on a HTF (that's Murdock speak for High Tech Fly). Max was determined that we bring it home and eat it, so we did. Noah was a little hesitant to watch as I thumped it on the head but Max was laughing a hysterical, maniacal, frightening laugh as he yelled "Die Fishy Die" It did make for a tasty dinner and an opportunity to talk to the boys about where our food comes from. For the record, you can keep one Cutthroat over 24 inches, so that's what this one was 24 1/2

As anyone who knows me is aware, every January I apply for river permits on the Middle Fork of the Salmon in Idaho, and every February I get back my Permit Denied letter. So this past February I picked up a post permit season MFS permit for Sept 20th.I sent out invitations for the trip early and often. Many people committed, many bailed out. In the end a hearty crew of 8 set sail on what is absolutely an annual trip now. All original participants are grandfathered in for every year to come, the rest of you will have to beg and plead for a spot on next years trip. Obviously the water in September is extremely low so this was a Kayak adventure only but Napes was able to get his small cataraft down. The weather was amazing, the fishing was fantastic, my camera spent most of it's time in a drybag in my boat so pics are limited. The rule about only one night camping a t a hotspring is not in effect after the season and so we camped at the sheepeater hot springs, Sunflower, and then Loon Creek. We boiled ourselves silly for 3 nights in a row. We threw a big Elk roast in Napes' cooler and cooked it on sticks over the fire. We ate like heathens for the first 2 nights. We saw no bears, no mountain lions, we did get checked out by the local river otter crew as they eddied out right next to us to watch us float by. It was one of the greatest river trips of my life. Thanks to those who came. If you weren't there it was truly your loss.

Evan Tea, happy to be.

Dagger Falls at low water

Unbelievable fall colors at the ramp. For the first couple days we all just floated with our mouths open in astonishment at the beauty we were surrounded by.

The crew gets ready to launch
L-R Steven LeGrande Wiley, Colby Frazier, Alexander John Napier III, Nash Way, Johnnie Allsen(in boat), Fat Newty, Evan Tea, Jason Tea

The Good life at Sunflower Hot spring.
You'll notice my Tillamook Cheese and Dry Salami waiting for me.
I honestly cannot think of anything better than this.

Colby in Mid Jump off of the White Creek Bridge

Napes in Mid Contemplation at the confluence of the MFS and Loon Creek
That's my boat and gear in the foreground. There is something very fulfilling and elemental about carrying all of you gear inside your kayak.

"Newty, Newty, I caught my first Trout!!
Napes was so excited he dragged this poor fish over rocks and trees on a punishing trip to the camera. The little guy did survive the ordeal, the fish also survived.

End of the water, start of the "It's about 2- 2.5 hours from here to Stanley." Road trip that lasted closer to 5 hours to Stanley, about 13 to home. Every one of us would do it again without hesitation. Thanks again guys for a wonderful trip. For those that missed it, better get your resume and letters of recommendation in to us soon.

Wednesday, August 18, 2010

Kaya has been doing very well here at home. I attribute her success to two things. She has an amazing will to be well. She has a Mother who's eye is single to the life and love of her child. I love them both.
Two big brothers who love their sister.

As the bretheren from Coldplay say,
"We live in a Beautiful world"

We tried to keep things as normal as possible for the boys while we were at the hospital and we're making a serious effort to let them know they are not forgotten. Last week before I had to go to work I took Noah on a horse ride up Day's Canyon in the right hand of Hobble Creek. It was his first ride outside of the pasture. I wanted it to be a good experience for him and he did fantastic. We rode for a little over an hour and we both had a great time. Hopefully it will be something we can continue. This week we're going backpacking in the Uinta's.

Boy's+ dog+ Horses= Nuttin but good times!
(yes those are wranglers)
(yes I'm still a Kayaker)

Thursday, August 5, 2010

So Far...

We've had Kaya home now for four days and she has managed to survive a constant barrage of well wishers, Grandparents, Great Grandparents, Aunt's, Uncles and Cousins, bringers of food stuffs and so many damn pink things I think I might just vomit. Honestly though, we appreciate all of the support we have received. Her first days at home have been remarkably unremarkable. She has settled nicely into the steady baby rhythm of Eat, Sleep, Poop, rinse, repeat. She's a pro at the eat and poop parts, we're working on the sleep portion. For my part, the absence of lactating breasts has been a huge boon to my sleeping vs. getting up every hour ratio. Tiff on the other hand is getting her sleep where she can, mostly during daytime naps. Kaya went to the pediatrician today. He had a good look at her and thinks the hearing problem is due to the crap(yes literally) in her ear. Poor kid looks to be getting an ear infection already in the good ear. The Pediadoc also clipped her tounge. It was held down too short so he clipped away. These are the reasons we don't remember being this young, it's to traumatic. If we could remember the first days of life every one of us would have post traumatic stress syndrome. So as far as the Pediatrician goes he said she looked fine, needs to gain some weight. Come back in a week and look at the ear infection again and weigh her again. So things here are going quite swimmingly so far. We love having her home with the rest of us. We do not miss traveling to the NICU. I'm headed to work for a few days so the pictures will be few and far between but Tiff has loads of helpers here to make sure things go well. She'll probably have more help than when I'm home. I'm sure you're all sick to death of reading my drivel so here come the pics.

Sleepin. Max and I both sleep like that, with our hands under our cheeks.

Just my luck, she's a natural born cheerleader.

Early onset of runner's knee

This one is part Heisman Trophy pose,
the other half reminds me of the words of George Castanza
She looks "Like an angry old man, trying to send back soup in a deli"

Thanks again for the prayers and concern. I'll try to keep you all updated regularly.
Goodnight, and good luck.

Monday, August 2, 2010


Well, last Monday we were just starting down this path. We are still just at the beginning of a long and certainly winding road but we have reached the first milestone. We are home, all of us. Kaya was discharged from the hospital this morning. Her appetite can only be described as ravenous. We are all so happy to have our little family intact and at home. Again we thank you all for your kind thoughts, words and prayers. It's been a rough week and we have a long way to travel yet. Within the coming month we have appointments with the Pediatric Surgeon from Primary's to look at the eventration in her diaphragm. We have an appointment to see the Pediatric Cardiologist to look at the ASD in her heart, We have to go see the Audiologist for her hearing loss in her right ear. Next is the big kick in the goners. The geneticist at UVRMC had a good look at her over the last two days. I think she was looking for an explanation for all of Kaya's problems and she found a hook to hang them on. The Dr. thinks she has several "Markers" for a rare but serious Genetic Syndrome (not Downs but with similar implications) She was basically looking at Kaya's entire body, face and her internal problems and piecing them together until she found a possible diagnosis. They took a blood draw this morning and it will be sent to the University of Chicago, one of only six places in the world that do this testing. The test results won't be back for 2 months so we get to worry. Even then the test will only show a positive if she has it but if the test is negative it still doesn't rule out the problem. The test misses the gene 50% of the time. So basically if it comes back negative we still get to worry our brains out for a few years while we watch her develop. IF she has it, it's a very mild case but even the mild cases seem to have very serious problems, so we wait and we pray and while we have her here, at home she is our beautiful little girl and we will cherish every moment. Your continued prayers and thoughts are very appreciated as we move along what may prove to be a VERY long road.

Dressed for the ride home.
Her eyes are all red and puffy again due to having an eye exam this morning where they clamped her eyes open and poured fluid in them.

Moose gets to hold her for the first time.
He's a defender of his little Sister. On Saturday Tiff was rubbing her feet and she started to squawk and Max piped up "Leave her ALONE mom!!"
She's in good hands

Friday, July 30, 2010

Day 5, We've moved

Today we all moved. Tiff got to move back home albeit temporarily since we have to be in the NICU for feedings. Kaya also made a move today. They removed the last line from her navel and she move to the b-side of the NICU. We still have a corner but now we have a window(into the hallway) so we feel like we've received a big promotion. Things have gone quite well today, Tiff has been feeding her and Kaya is slowly figuring out the process. Now she just needs to eat more. As far as problems go, we still have the eventration in the diaphragm. The pediatric surgeon from Primary Children's looked at the X-ray. They feel like it may need help in the future but for now we'll just leave it as it's not causing any problems. He wants to see her again in a month. Kaya also had her hearing test today and like her dad usually did on tests, she failed. They then called for a more sophistimucated(homer simpson word) test. The audiologist put some electrodes on her head to monitor brain impulses, then they put a speaker in her ear and tested the brain's response to sound. Her left ear passed, her right did not. The audiologist told me she has some minor hearing loss in the right ear that is likely due to some debris in the ear or some water behind the ear drum. He tested the auditory nerve and it was responsive so again, we come back in a month. Otherwise most of the problems have been resolved. We had a slight setback in the breathing department and she is back on a canula but they say it's nothing to worry about as it usually happens when they have to start nursing instead of just lounging around being lazy all day. Her eyes are still swollen and they want to make sure her lymph system is working properly. As I type Tiff is feeding her and she is eating like a champ. So all things considered it was another good day. The room we left for this one had two premature twin boys in it. They we're so small Kaya could have put some Sumo moves on them. I am so happy our little girl is doing so well and I feel so guilty as well. The other day the father and grandfather of the twins were in a panic attempting to contact the Bishop and then they gave the small boy a name and a blessing. I'm guilty of a little eavesdropping and I was amazed and humbled by their prayer. You never have to look far to see others who are suffering more than you are. We are so grateful for our families, for our two wonderful boys, and for all of you out there in cyberworld who have offered your kind thoughts and prayers. We pray that Kaya's progress continues and that we will be able to take her home soon.(Then the fun starts) That's all for tonight. See you all tomorrow.

Getting ready for some chow.

Spaceman Spliff getting her ears checked

Thursday, July 29, 2010


Tonight we'll all sleep with a smile on our faces :)

More of the good, less of the bad.

The alcohol wipe they used to remove the mysterious alien marks on Kaya's head are some kind of medical miracle wipe. The problems are all going away on their own. Lungs are doing better each day. Food is being digested and amounts increased each day. The eventration in the diaphragm is still there but not causing respiration problems so the are just watching it. There were some things with the Heart echo called ASD Atrial septum deviation where basically the Atrial walls of the heart have not closed completely but they say it is common and not of concern. The Doc this morning even thinks the facial paralysis is beginning to diminish. All great things. So I asked if I could take home some of the miracle alcohol wipes for when she breaks her arm or some other injury, I can just wipe her with the "Healing wipes" and be good as new. They told me to take as many as I wanted.

Tiff also got to start trying to breastfeed her today. It's a slow start because for the first 3 days when Kaya was showing the signs of wanting to nurse they can't let her so she's a little confused but it'll all be good. She get's to try every 3 hours. They are also planning to take out the last line from her navel tomorrow and then they may move her to the other side of the NICU for babies without respiratory problems. After that it sounds like she just has to learn to eat regularly and we may get to take her home.

Tiff is doing well. She is a trooper and has been up and moving since the second morning. I think she's about done with the hospital but it looks like she'll be here one more night.

All our thanks to everyone for the thoughts and prayers.
We are so happy with the progress she has made and we look forward to being home in the near future.

A little time with the mommy.
Good good things.

Wednesday, July 28, 2010

What a difference a day makes...

Today started off good like yesterday and then it got better instead of worse for a change. The "Free air" outside the lungs has dissipated on it's own
The eventration (sp)? which was the diaphragm problem that almost sent us to Primary Childrens was not seen on this mornings X-ray as large as it had been. It will be watched but is not presently a huge concern.
Kaya is Breathing on her own, no tubes, no C-pap, no canula. Her breathing is good although her lungs are still a little cloudy with meconium.
The facial paralysis is likely a damaged nerve from being born and may never go away. Not sure how evident it will be.
All of these things were combined with some mysterious dots on her head. The dots were black and down both sides of her head in a symmetrical pattern and had the Docs completely baffled. They were thinking some kind of genetic disorder. Each of the NeoNat Docs had different thoughts. Possible birth marks, other things I can't pronounce. The Attending Doc this morning had been online on medical journals looking for answers and had been measuring the spots. We started to discuss the spots and I commented that it looked like someone had used a magic marker to spot her head for identification. The Doc laughed and said she also thought they looked like ink. Then she said "just for fun let's see if they rub off" she grabbed an alcohol rub and proceeded to rub off the strange genetic defects. I thought Tiff was gonna pass out, then she and the Doc had a little cry over it. Turns out that when they did the brain scanner for the seizures they had to mark her head, but they failed to wash it off, or communicate it to anyone else. So there you go, Occam's Razor says the simplest solution is usually the right one. Kaya is currently sleeping easily and has been eating (from a tube) and digesting well. We are extremely encouraged by her progress while trying to remain cautiously optimistic about the coming days. Our thanks to all of you who have kept our little girl and us in your thoughts and prayers, it's working.
And now for the pictures.

Sleeping peacefully
The tube is just a feeding tube

The obligatory pink bow.

I got to hold my daughter for the first time.
today it was a good day.

She even tried to open her extremely swollen eyes for her dad.
That's Daddy's girl right there.

Tuesday, July 27, 2010

Day 2, One step forward, 5 steps back

This morning before the C-pap went on.

Last night when Tiff and I went to bed we were very encouraged by Kaya's progress. She was off the vent, breathing on her own and getting rid of the rest of the junk in her lungs. This morning I went up to see her and she was doing well. I got pictures of her with just a canula in her nose. Went back with my dad an hour later and the neonatal Doc hit me with a laundry list of problems. They had to put her on a C-pap because she was having a hard time breathing. She has air that has escaped to the outside of her lungs through a small tear and is building in her body cavity, It's going to require a needle through the ribs to tap it and let it out. Sign this consent form. They later decided not to do it as the air pocket is shrinking. Next, partial paralysis on her face. Not sure why but maybe a nerve that got stretched during delivery. Next she has a body that is small. Head is normal size but body didn't get everything it needed from the placenta. Which then leads to her lungs and diaphragm. The diaphragm is not developed correctly on one side and may require surgery. Doc says he wants to review the x-ray with the surgeons at Primary Childrens and possibly move her there for all of these problems. Do you have any questions? I told him my brain was still back on the C-pap machine.
So there you have it. We have one very sick but very strong willed little girl. So this is where we are now at 5pm. The Surgeons at Primary's think the diaphragm problem may not be the whole problem with the lungs, so we wait.
The air pocket is shrinking, so we wait.
The facial paralysis may or may not ever go away, so we wait.
They want to send chromosomes to the lab to test for genetic defects, syndromes, that may be part of a larger picture that is causing so many problems, or it may just be that the placenta didn't do it's job very well, even though Tiff did everything right.
So we wait.
Tonight they are going to do a songram of her brain to check it out.
So we wait.
Then they'll sonogram her heart
so we wait.
Then at 8 they will take another X-ray of her chest to check the air pocket.
And so we wait.
From what I can gather we expect to be in the NICU somewhere between another week and a month. It all depends on how our little girl progresses. Currently she is sleeping soundly with her Cpap and her array of wires and tubes,
and so we wait.

On an up note Tiff did get to hold her for a minute.

Our plugged in baby girl.

Monday, July 26, 2010

Kaya Kinnerley Newton Day 1

We are rapidly approaching the end of one of the best and worst days of my life. Tiff was scheduled for a possible C section as Kaya has been breech for about 2 weeks. We came in at 5am. They prepped her for a C section and then at 7:15am the doc checked and she had turned, put her head down and was getting ready to join us. Fast forward to around 4pm the doc came back, unhappy about the progress and decided to do the C section. When they broke Tiff's water it was green so they knew Meconium(Poop) was present and had the NICU respiratory team standing by to suction Kaya. The C section went well but once she was out they found she had aspirated a lot of meconium. I watched as 5 then 7 then 11 people worked on my little girl. They had to intubate her. It was very touch and go for a while, I felt like I was in a scene from ER. Then once in the NICU she started having what they thought were seizures possibly due to blood on her brain or oxygen starvation. Right now that has ceased and may have just been normal infant reaction to life on the outside. It is now 12:15 am and they just pulled her off the ventilator. Things are looking slightly better, but now we have the possibility of infection due to the meconium she inhaled. Tiff is recovering well and I just wheeled her up to see Kaya.
I have no idea what time she was born and all the weights I heard during the chaos were in Kilos but they tell me she weighed in at 5lbs 3oz
Our little girl is alive and fighting.
Prayers, kind thoughts, and good vibes are welcome offerings.

Our little Girl

Proud Brothers

Saturday, June 12, 2010


Today is June 12, I've had this day circled on the calendar for 5 months. I've trained my everlovin ass off for today, and it was almost a disaster, almost.

My training was going well till I took that week and a half off for the Selway trip. I came home from that and ran my final 20 miler and completely messed up my Illiotibial band which runs from your hip to knee. I hurt it to the point I couldn't finish my other runs and actually walked home from a few runs almost in tears. I was completely unsure what today would bring and the prospects of even finishing were not good. Thanks to a some creative stretching and a varitable cornucopia of modern medicines I was able to pull it off. Not as fast as I had hoped but it was my first time and the hip and knee gave me a little trouble. I did sub-4 it though.

The Girl in the red is Jenny Davidson, This was all her fault.
I had spent about 2 years just happily running. Usually 5-10 miles and the occasional longer run. I was happy, I enjoyed running, then one fateful day Jenny called and queried me, "you ever gonna do anything with the running?" So here we are. I had just caught up to her badass self after 23 miles of trying.
I know some of you are gonna make some wise crack about me running shirtless. I'm ok with that. I may have been one of only 2 guys that were shirtless but I was NOT one of the 15-20 guys with bloody nipples bleeding all down their shirts. Put some ducktape on those puppies for hell's sake. I finally had to take my shirt off as it was soaked from the 2 hours of hard rain at the start and it was keeping me cold.

My sister-in -law Michelle made this and bought it to me.
Thanks Shell, you rock!

Chompin on a post-race Creamie while I waited for my Shirt. I guess most marathoners aren't 6'6". All things considered it went well, I enjoyed it and I'll likely do it again, but not tomorrow.
They say you can learn a lot about yourself in 26.2 miles.
What did I learn?
26.2 miles is a Hella long way to run.