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