family pic

family pic

Sunday, August 31, 2008

power of one

to inspire, encourage, motivate individualS to positively affect the lives of others, not themselves! the power of one. Saylor

Nate and i have always known that Saylor was never fully ours. I wonder if i feel a sliver of what perhaps the mother of our Savior felt, a cherished gift to mother such a cherished gift to all mankind. Saylor's spirit emanates beyond anything i can visually see, her power is magnificent. Her mission on earth is far more then i have been called to do and she fulfills it with every breath drawn, its her very presence. the power to inspire others to come unto Christ. When her life is set to be an example through what she experiences then we see more clearly how true this is, in the people around us who are inspired to kneel when they dont normally kneel, to fast when sacrifice has been vacant from their lives, to attend the temple after a long absence, to have faith, to give when giving is really hard.

one of the many experiences of Saylor's power over the last few weeks has been that of blood. there are no coincidences in everything is intricately placed i have no doubt of that. only a few weeks before surgery it was announced that our neighborhood was asked to participate in a blood drive on the exact day that saylor was to have surgery and even more intricate the blood from this particular drive was to be donated to pediatric hospitals only. i knew by the spirit that this was how those around us could give to us, in honor of saylor. i encouraged and the spark became great flames of multitudes giving blood. saving lives.

the last few days have been trying as saylor reverts back to a painful uncomfortable complicated body and health. but i know we still progress towards healing. i am grateful for a few good days and know that more will soon come.

Saturday, August 30, 2008

BYU's future

in honor of todays season opener ...

Friday, August 29, 2008

williams violin

lots of you have asked me how i am holding up, i think i am fine, or i thought i was fine until yesterday, william helped me see how not fine i am. mind you sharing this story with the world means i am willing and able to laugh at myself so give me some props for that at least.

Storie just started school orchestra this week and she has chosen the violin to play. this means we need to purchase a violin. holy pricey these little pieces of wood and strings are! so its been on my to do list since we arrived home (well ok before that even). i have been stalking ksl in hopes of finding a good used in her size and in good condition with a not so hefty price tag. i have found a few but who knew that used violins where such a hot item, you have to pounce or you are on the loosing end. its kind of like shopping on ebay commercials all the sudden, shop victoriously! so i found one yesterday on ksl ... a bit more than i had wanted to spend but far less than a new one so i thought hey i will call nate and see what he thinks. but then i dialed and forgot what i was doing because too much was going through my brain and there was the computer in front of me with williams name and number on it so even though i had dialed nate i asked for william. nate tells me this is him... cause he is thinking why has my wife called me asking for william. and so i respond with so i am calling about the violin you have for sale? and he says yeah? and i say is there a time we can come by and look at it? and he says yeah, right now. and i chuckled a little and said well we cant right now. and he said are you serious? so then i am thinking why is this william guy being so weird so i say yeah i am serious ... then the realization hit! i was talking to NATE! oh i couldnt believe it, i was so far gone i had not even realized what i had done or who i was talking to! no recognition. i started to laugh and cry for both reasons and realized wowsers i am far gone!

how is saylor? well the last few days have been a little rougher then the beginning of the week. she was sleeping so well, now not so much! and yesterday her stomach was pretty upset all day and she was juggling some new pain. pretty ornery and pail ... so far diddo goes for today! one day at a time!

Wednesday, August 27, 2008

borrowed pets

this is lily, one of storie's many borrowed pets. the girls have been riding for a little over a year now so we have several horse "pets" these days. They both have really enjoyed it and excel at it as well. this last monday night was storie's horse show for the year. i was so glad to have been out of the hospital and able to be there, wasnt planning on it being a 4 hour event but never the less storie had a great time and rode beautifully! she took 2 first place prizes home and 2 second, she also won musical cones horseback style! the best part was her emergency dismount that she did in a real emergency when lily got spooked by something the parking lot, it was graceful and perfect and she kept lily under control at the same time! storie we are so proud of you!

this is meera our next borrowed pet ... jk! meera takes lessons from the same coach as the girls, not to mention she is a neighbor and one of our bestest friends too!

this is the borrowed pet we cant wait to get rid of! saylors pee bag. it comes with mile long tubing and serious inconvenience. its driving me mad! i dont know how saylor does it! its not even on me and i cant stand it! hopefully this pet finds a new home in the Gcan in a few weeks!

she is doing well today. the every morning fights and sorrow over the flushing is kind of getting me down. she hates it so bad and insists that it hurts. the bad thing is, she will have to do this the rest of her life so she must get used to it. i dont think its a pain thing, more an issue of a discomfort that she needs to grow to accept. eventually she will do it herself along with her cathing, for now its me who inflicts this torture on her every morning and its wearing on me. she had a light bulb realization at the table last night she proclaimed that she knows what the word "pain" means .... "hurt" she says. glad she figured that out just now after a million docs have asked her how much pain she is in a million times! a few minutes later she was being a little testy and i asked her what "love" means? she is still working on it.

Tuesday, August 26, 2008


"yesterday is history, tomorrow is a mystery, today is a gift ... that is why its called the present."

today was pure joy. i haven't felt so blissfully peacefully calm and just plain happy for such a long time. i am not an early riser but i woke up early today and wasn't at all agitated, when saylor called for me nate fetched her and brought her to snuggle with me in bed, when he slid her into my arms it was indescribable how beautiful it felt, it was more than the usual, it was more than i can describe with words. i quickly took notice of my feelings and just relished in them with her for about an hour. the kids also were up and at em and it felt so good to not be rushed to school, have laundry started and the house clean and 5 thank you notes all done before they even left.

some yoga practice followed, i can feel the steps backwards my body has taken in the last few months so it felt good to do something for myself. then a quick shower and onto a promised movie for saylor. she is bored out of her mind really so i had to come up with calm activities to go do. i bet it cant be guessed what we saw ... jk of course kung fu panda. the above quote is what i got out of the movie for the day. saylor loved it and i loved the time with her. she has really turned a corner in the last 2 days and seems to be quickly returning to her self. it feels almost unreal how normal things were today, how happy and peaceful she was, it seemed as though the surgery and all its complications where years ago. she was so exhausted from just getting out to the movie and feel asleep in the car so i gently carried her in and we took a 2 hour nap on my bed together, no interruptions. can you believe that? it was so blissful. the kids came home from school and got to their jobs and homework with no complaining while i cleaned the garage and the car. two things i rarely have time to get to.

we cooked dinner as a family and we are just now settling into the evening rituals. it was such a beautiful perfect day ... it was a gift, a gift i recognized and experienced to its fullest. a present, the present.

Sunday, August 24, 2008

i want to be a ... florist ... when i grow up!

this is who saylor wants to be when she grows up. its that first moment, that first career you identify ... some kids its a police or fireman, a doctor, a garbage man, whatever ... my daughter wants to be a florist. i should be extatic right? well i am but i am also a little bummed that it has very little do with me, i am not her inspiration.

we have the bee movie but it also got played over and over on the movie channel at PCMC and so i think we have watched it at least 20 times no exageration. Vanessa is her inspirtation. so for now she wants to be a florist. how convenient!

today has been a rough morning at it looks as though we are headed back to this dreadful place ...

i think we will hold out until tomorrow just simply because we have things under control and as if that place is not difficult to handle on any given day its worse on the weekends. so i went to flush saylor this morning, it wouldnt pull back. tried all the tricks the docs taught me and ... nothing. so i knew i had to get the locked cap off once again before she got in pain or worse risk rupturing so i tried and tried and couldnt. she wasnt in pain yet so i was good on time but i decided to go ahead and call nate at church. he came home and got the locked cap off so we were able to drain all the urine and pressure out. total we spent an hour and 22 minutes trying to fix the troubled side and still to no avail. anyhow we sort of just gave up with exhaustion. we know how to keep her drained and safe but its not a long term fix. what is up with the superpubic side that refuses to work? anyhow if we cant get it flushing by tomorrow morning it looks as though saylor and i are headed back.

Friday, August 22, 2008

home ... no wait ... ok now

I am scared to even say the words WE ARE HOME for fear that we will be jinxed. we came home late thur night only to return friday afternoon as a result of some potentially serious complications. we are back home and plummeting to the ground with exhaustion as the adrenaline of the day wears off.

last night was beautiful. it felt so good to be home. saylor went to sleep at around 11pm (way early for her) and she slept through the night except when nate woke her to take pain meds, even then she went right back to sleep. nate sleeps like a rock and its actually pretty rare for him to help with the kiddos in the night but he did last night all night, what a hero. i got a good nights sleep and it was a good thing! this morning was a little unnerving with the hustle to get the other two to school, something i am not used to yet, and everything in order and be saylors full time nurse. at about 1:30 saylor started crying that she was pain, it escalated a little so i undid her diaper to resolve the matter. no poop but some gauze had been swallowed up into an incision a tad bit. so i tried to pull it out but she was in too much pain and i couldnt hold her down and pull it out so i called for reinforcements and my mom came up. we got it out and got her somewhat calm. we got into my bed and i tried soothing her to sleep. she was only calm for about 15 min and kept kicking her legs like she had restless leg syndrome or something. i could see she was still in pain. then more crying that over an hour escalated into severe shaking and screaming. i called her surgeon at PCMC who instructed me to head back. so i scrambled to get someone to take the kids and some stuff together and her in the car. all the while on the phone with nate while i panicked a little. Her draining tube was not draining so it didnt take long for nate to realize the pain was build up of too much urine in her tattered bladder and that we had to get it out before it ruptured (potentially the worst thing ever, could leave us worse of then before) so the plan was to pull over to the side of the road and try and unlock her locked catheter. i couldnt get it. so i kept driving to nate who was about half way to PCMC at work. he jumped in the car very literally on the side of the freeway where he got dropped off and proceeded to try and get the locked cap off and thank goodness he did, i had a strong feeling our time was short and i was starting to shake really bad myself. we decided to keep going to PCMC with a broken drain and a not supposed to be open drain. saylor calmed right down, her pain was relieved and she was happy again. we got there and waited for about 2 hours for her surgeon to get out of surgery. he would have come sooner but got word from another doc who saw us right when we came in that saylor was more stable now as a result of something crazy her parents did in the car on the way. when he came in he pronounced nate brilliant! i agree ... he saved her! then he fixed her SP tube so it would drain, it had a huge clot blocking it! we came up with a care plane to hopefully prevent this from happening again. we also came to the realization when she was hurting just a little in the beginning that this was a good sign, a sign that she could feel when she was full, that she has feeling down there is such a great thing. we have never known how much feeling she had and most SB kids dont have much. so this was about the only good thing that came of this scenario and its probably something we would have learned down the road anyhow, oh well i guess just some silver lining.

in the end i know the fierce prayers i was offering through tears and driving where answered and a potentially very serious situation was evaded with the help of our Heavenly Father. how grateful i am for Nate ... he really is my HERO! our HERO!

Thursday, August 21, 2008


no hospital stay is complete without an image like this!

its almost time for this stay to come to an end. i fear that we may be back all to quickly but i pray we wont be back before our two week post op follow up and one tube removal. i expect by tomorrow to be home in my own bed and may be able to swing an even earlier release with the help of some good nurses.

today my guess is i look like i feel. i dont know why today has been hard, saylor has been doing well and by far today was better than the same day a week ago. i must be just tired of this place and it must show. several people have commeneted on my discheveled tired look, and i am too tired to care.

yesterday i forgot to mention in my post that i have been coloring too ... so that means all of you that have brought coloring items are helping not just saylor but me too!

what has nate been doing? watching the olympics and studying for his fantasy football draft like it was the MCAT

today we are watching daddy day camp. its pretty funny. so far my fav part is when the kids are on the bus and the f-dude kid says his name then follows it with this "call me mullet ....(then slicks his hair with his hands) all business in front and party in the back!" LOL

Wednesday, August 20, 2008

what have i been doing?

k so update on saylor first ... she is doing well today, i would expect her to be a bit happier than she is about her current state. this morning they took her off the heart and resp monitors .... a few less things. they hook them back up for vitals but that only takes 5 min. then they blocked up her mit port so she only has one drain now, one pee bag! yeah! then a little after that they decided that they should heplock her pic line because we are having a hard time getting her hungry or thirsty. we cut it in half yesterday but it didnt work so we stopped it today. we will hook it back up tonight if she doesnt have enough output to know that she is hydrated. so all the kid has connected her to the pole, the bed etc ... is the one pee bag. so i was thinking FREEDOM girl. she has been less willing to get up and go anywhere or do anything or even sit up than before. this morning we started clear liquids again. we pretty much have to force her but she is thus far ok. i worry that she will get distended again and we will have to take a step back. this morning i made her walk in her walker across the hall for a shower ... she hasnt had one in 9 days! she wasnt too happy with me. i thought she would think it felt good and was worth it. nodda. the opposite. but her color is good and we are moving forward .... i think. doc says we are shooting to go home on friday but its a tight goal. she may or may not make it, easily could go either way.

today my long time friend becky and daughter violet came bearing more toys! and a good visit. our mutual friend Valerie also came. the sweetness bought a huge baloon bouquet not knowing that latex is not alowed here and more so that its not alowed here because of kids like saylor. anyhow one mylar one that is a gigantic pig made it to the room. having some gorgeous faces to visit with was fun! it gets me through the day .. it really does. i have spent a lot of deep reflection wondering how i came to have such amazing friends! i am so so so blessed and loved. still very overwhelmed.

then nate's aunt juanita and uncle gary stopped by with a disney princess pillow and a fun visit. so nice of them, good to see family, especially this side that we have not known for too long.

ok so a lot of my friends ask me where or how i sleep or what i do. so here it is

yeah i read it. last weekend. i am going to try and keep this review short and sweet, i could go on and on i think. so first i want to say overall this is a good read, i think my expectations have been pretty high. i think many twilight fans have high expectations. i could have done without about 400 pages of this 800 page book! the beginning was good, the end was good. inbetween not so sure. the other thing that i have been contemplating a lot especially when it comes to the critisism of a lot of readers out there. this book has a target market that consists of mostly young adult readers. whatever that means. anyhow i think that lends to the writing style. and i think people forget who its written for. that being said ... i wouldnt let any of the young adults in my life read it! then there are the obsessed women ruining their own life's in the chase of this unrealistic fantasy ... for them i have not much to say ... they are lost thats for sure!

i am currently reading Eve's daughter by lynn austin. its good, but i am struggling to be entertained enough, dont think it has anything to do with the book, i struggled to get through breaking dawn ... its just hard to focus right now.

speaking of reading ... my fav material right now is

MAGS! so i brought a few, spent through them rather quickly then started raiding the various waiting rooms in this place. of course i returned my borrowed items. but then one inspired friend brought me a good big stack of slick pages! oh girl you saved me ... thanks

way to much of this! we always eat horrible in here. too much junk. i gain weight here and get bloated! lots of sitting around and eating is the one way to get out of this room for a break. anyhow i have been trying to be good but comfort food is never good for you and thats what i gravitate towards. i am looking forward to going home and getting back to a more normal diet for me and getting back into yoga ... speaking of ...

brought the yoga mat ... i havent done it as religiously as i wanted just here and there. its been hard. like i expected but it sure came in handy when i could no longer stand being curled up at the end of saylors bed and couldnt bear to wake nate off the chair bed so i rolled that thing out on this incredibly hard floor and went to sleep. not sure that it was any easier on my bod then the curl at the end of a hospital bed but it was a new hurt, a change so it was good.

and of course ...

and whats really getting me through ....

not the show and not these people but my own! i would name them all but i cant! the list is too long!

and finally a spritual opportunity to serve.

its been a long time since a fellow SB mom has contacted me while anticipating participating in the MOMS trial. but its something that i LOVE to do. something i long to do. if i can help a mom get through the most beautiful yet difficult thing i have ever done then thats worth what i went through. so just so happens that a mom in hawaii recently diagnosed getting ready to go to UCSF needed me this week. Maelani. she found me through someone in utah who actually barely knows me but knew enough to know that i had fetal surgery who did what she could to find me so that this sista could get some comfort from the only other type of mom who would ever understand what she is feeling. thank you! thank you thank you Heavenly Father for this careful placement!

Tuesday, August 19, 2008

bees make honey - saylor makes tar

again sorry for the non rotated pics.
yesteray and today we continue to make slow but sure progress. this yellow rocking chair has become saylors place of refuge. she spent about 4-5 hours in it yesterday and about 2 already today. i can see her body relaxing a little in little gestures like not holding her arms so stiff and allowing them to go above her head while she sleeps etc... we have gone back to being able to start clear liquids again but conservatively only 4 ounces of liquid for the next 24 hours. then we will see her belly can take it and hopefully move forward.

last night barrett, heather, connor, & eva came for a visit. they have been such good supportive friends, heather is the most sincere loving christ like person i know i think. there is no one she dosnt like and there are so many that she loves! she brought us ...

heather & i both share the same passion for this little tasty bakery in american fork, however it seems to be always be 0 calories on her! anyhow its so delish and so generous and kind. their visit was nice. heather got me crying. i have been avoiding that.

not long after they took off my good friend debbie came with her girls bearing a near xmas load of gifts for saylor! AND dinner for nate and I! how do you thank someone for that? how do you thank any of the people in our lifes right now holding us up, getting us through? i know i know you dont have to but i feel so overwhelmed with the love that has been offered us! debbie is someone i just connect with in my soul, a true sister! we havent known each other long, but we have grown close. she is constantly checkin on me via text or phone and is so genuine! her girls were darling and i hope that their experience here was a good one.

last night nate crashed at about 10 and saylor and i stayed up until about LATE! she started hurting pretty bad at a little after midnight, i have learned this last few days that to get her past the pain i must cause her more ... its hard but it works. the trick is to get her to sit up so she can pass what gas or whatever it is thats moving through her body. doesnt make tons of sense to me considering that she has basically been NPO for a week now. anyhow i guess the body makes goo. so i climbed into bed with her at the head of the bed and lifted her up and stradled her so she could rest her back on my abdomen. after a bit she was getting pretty shaky so i decided to lay her back down, then i felt something wet. i looked down and saw a dark stream flowing out of her diaper, near her mit port (the one that has already been pulled out on accident once) my heart sank and i justt ran out the door and told the nearest nurse we had an emergency. i was positive it was blood. i was terrified of what this meant. then we turned on the light and saw that it was more like black green like stuff, then after a few thoughts we realized its POOP - so i had a baby this week after all. she is pretty much producing something similar to what a newborn first poops, sticky TAR! it took a full hour to clean her up and get her bed back in order. but i was happy to do it so long as it was poop not blood. she slept most of the rest of the night.

this morning we had another tar blow out .... we are pleased to see her bowells doing something. thus the start of clear liquids again. she is managing her pain, you can tell its hard but she has such a high tolerance. today i even had her stand up while i held her for about 30 seconds.

we have had two visits so far today ... my long time best friend ever (besides nate) angi and her daughter saylors friend brynlee and keagan. they brought a dry erase board -clever! and some modeling clay. it was a good visit. i miss not talking to ang everyday so it was good to see my sisterhood of the traveling pants.

just before ang came the salt lake

came by. including bumble and since we have watched the bee movie about 10 times this week she asked bumble if he makes honey ... aparantly he does. she still wants to marry cosmo though! the players were really nice, they signed a ball for her.

i can find the eloquence inside that i want to! i really want to express thanks to so many of the angels in my life! its hard to find an adequate or eloquent enough way. nothing is near good enough to express my gratitude!

PS - i got dressed and ready about half way.

Monday, August 18, 2008

another step back ... blessing in disguise.

its been an interesting 24 hours. last night after our walk out with saylor we discovered that saylor's stomach was more swollen and then that she was arching her back. upon arrival back to her room we realized that she was distended and full of gas. she was exhausted and went to sleep though, still arching her back. it didnt take long for pain to kick in at her neck and hip because of the way she was holding herself to compensate for the pain. then trouble started and i became really frustrated with saylors pain managment. it was really hard to see her hurt that bad and have nothing to help her with. the nurses kept calling the residents who kept frustrating me more and then i started falling emotionally apart as saylor was falling physically apart. the color that had come back to her and quickly left and she looked very ill again. nate had gone home to gear up with clean clothes and work clothes for the week but i called him at 4am and made him come back. i usually am the feisty one with the docs but i just didnt have it in me. good thing nate did. when he arrived he insisted on actually speaking to the resident. he stayed calm but firm. then within 15 minutes another resident walked in and we peacefully resolved the issues and came up with a care plan to address saylors needs. yesterday was her first day on clear liquid diet ... obviously her digestive system was not ready so we had to take a step back and come off it. after she finally got some sleep early this morning i got her up and into the rocking chair sitting up for a bit where she informed me, liz, and kathy that it hurts when she farts. great news ... its coming back. when i lifted her back into bed she pooped ... YEAH its coming out! she is also off her morphine and on some other meds. within a matter of hours her color was better then ever, she was happier and more conversative then she has been all week. totally different child in a matter of hours. so crazy! she even was nice to dr wallis, he was shocked! i feel much more at peace.

i owe a better mood & spirit of my own to my good friends liz & kathy. you have touched me deeply with your generosity and kind gifts to get me through. talking today did more for me than you two will ever know... thank you.

saylor's grandma gayla & bill also brought smiles, cheers, and love today. followed by my sweet older sister jessica and uncle aaron. all of you have kept the lonely feelings without nate away and me focused on other things. sorry i am so grimmy and saturated looking.

Sunday, August 17, 2008

can we talk about this? WARNING GRAPHIC

thought i would start with a happy picture. saylor & nate did a bit of pipe cleaner art today. its nice to see her smile, even if it doesnt last.

something i have been wanting to share is ... can we talk about this? when anything scary or painful needs to be done saylor asks this question. the child life specialist pointed out how amazing this is. its not uncommon for a child her age to ask this in these circumstances, however its usually a stalling tactic. she pointed out that with saylor its not and how adult like of a process that is. surprising yet not ... hasnt she always been older than all of us?

today nate & i have been thrilled with the output coming out of the jeopardized tube yesterday. she is continueing forward on the healing pathway. there is always a few hard things in every day to hurdle over. one of them is always getting out of the bed, its really painful. the other thing today was changing her surgical bandage and her pic line dressing. we havent changed saylor since she came out of surgery (meaning her diaper) not because we are lazy parents but because she has been NPO and has two drains draining urine so there has been no need too. kind of ironic that we went from changing her more in a 24 hour period then we could wrap our heads around to not at all, guess it balances out in the end. today we decided even though the diaper was not soiled that we would change it for fresh one ... it did have a bit of blood on it. glad we did cause we found some unpleasant blisters between her legs. not a good thing, one more painful spot. we have dressed them as best as possible and hope that they dont get worse.

here are some pics from the day ... some tears, some rides, some graphic pics of her tattered abdomen, some friends

steve, janita, & meera came to visit this afternoon. it was REALLY nice to see some friendly faces and have someone to visit with. we really do want visitors and dont think that means you must bring something, just come bearing yourselves, thats what we need right now. pictures are strange i know and not edited, for some reason iphoto is not working and saving things like i normally get it to, i have no energy to deal with it either so use your head and rotate! sorry.

doing much better ... thank you

this morning saylor has evaded going back to the OR. her mit stoma is draining again and though its not putting out much its putting out, a very good sign. she slept really well through the night and so we did as well. today she will get small sips of clear liquids. her color is coming back and her eyes are slowly returning to their natural blue, rather than the faded gray they have been. she is happier and more submissive to her challenges. she resists nearly every touch still but when it comes down to what we have to do she will do it and grit her teeth, we also can coax a smile! i will post more pics and another update later this afternoon. there is a sacrament service at 10:30-11 we are hoping to all make it!

thank you ... all of you! for all the love and support, the prayers, the faith, all the energy sent our way. we feel it, we believe in it too!

Saturday, August 16, 2008

please continue to pray

we are experiencing a complication that should it not resolve by morning could mean back to the OR. both nate and i are very scared and nate is blaming himself. after our walk while getting saylor back in her bed (cause he is the steadiest and strongest) one of her tubes pulled out and after fixing it its still not draining properly, he feels like its his fault, its not. its just part of the plan. you cant hold a snowflake and expect it to not be changed. anyhow going back to the OR would be a major step back and we are worried. please continue to pray for us.

thank you davina

Davina ... our friend .. our documentor! we miss you! check out her touching blog from a few days ago ...

Saylors NG tube came out a few minutes ago! YEAH one step closer to going home and getting better. its kind of funny how you have to remove all that is hooked up to get home. she is happy that its out. we also went on a walk outside in a stroller type thing and though she resisted going initally she was pretty happy when it was all done. we have had one complication today, one of her drainage tubes disconnected so we are watching it, its not draining right anymore and we dont know what that means, her doc will come in a bit to check on it.

i have so much to say ... no energy to say it.

just pictures today ... no words needed

Friday, August 15, 2008


So a few of you are waiting for saylor to be ready to have visitors. she really wants to see her siblings, they are on the way up this evening. saylor's mood is testy, her spirits are down, her body is graphically wounded, and she is prone to cry and break the heart but if you can stomach all that feel free to come. please email or text us to confirm a time to be sure that its ok. bring anything you would like, however be aware saylor is NPO for several more days so if you bring food or snacks ... hide it!

will it make me fart?

it was a long night. i slept from 10-12 then traded nate and he slept until 2:30 when i woke him up to trade and it lasted 10 minutes before saylor wanted me back. sometimes this feels good but i worry about how nate feels about this, i suppose its the way its always been but still. i know when she wants him over me i dont like it, i know makes no sense. so then i got back in bed with her and got a little sleep here and there until about 5am when i traded nate then i slept until 7:30 then sent him back to sleep. he woke up about 9. saylor had a rough night. she still is crying often for a drink and wondering why? we keep explaining but she is frustrated. she also is in a bit more pain than she would like but they wont give her anything more than what she has going. at some point last night a nurse told her she cant have anything to drink until she starts tooting ... or maybe it was nate who told her that. anyhow now every med they give her she asks "will it make me fart?" its going to be a long day. she wont get any thing to drink until sunday most likely, at the earliest sat night. long frustrating road. she is so tough but its hard to see her so sad. this is what i have been struggling with all along, if she is so happy and healthy now how could i send her to utter misery, and yet i did. hard stuff.

this is how rare this surgery is even here at PCMC - so her post op nurse who has been here like 20 years did not even know what a mitrofonof was. now most of you wont either but i do, nate does. anyhow its the port that she has now to cath her bladder, its made with her appendix and should work well in about a month after everything heals and we can use it the way it was meant to be used, she just has a drainage tube in it now. so i had to help her sound it out ... she was like what is that? oh dear ... then i nurse last night knew what it was but said she had not even taken care of one patient with one yet at PCMC in 4 years but i had at the hospital she came from. oh dear .... not so common. i watch them closely.

Thursday, August 14, 2008

i want a drink ...

Saylor has been out of surgery since about 6pm. i have been miscombobled a bit and a lot is running through my head. through out the day there were many things that i remembered i wanted to blog about but since have been forgoten. forgive me if this does not make sense or if i leave a few details missing. dont be afraid to ask, then i at least know what its you all want to know.

first off i want to thank everyone who gave blood today in saylors honor. it means so much to us. i especially want to thank any youth in our ward for this. also thanks for the continueing good comments, prayers, and thoughts pouring in, we feel very supported and blessed.

surgery went well. no complications came about and they were able to do everything they set out to do, including her pic line. our challenge remains how saylor is handling things. she is so the unexpected and fierce in fear. she woke up very fast from the annest and they thought they had a bit more time to remove the intibation tube but saylor woke up to fast .. so she was a bit upset about that. she is in a great deal of pain and knows and feels the slightest movement even the shift of a blanket and begs for nothing to be moved. she is NPO until sunday or monday (meaning no food no liquids no nothing. IV's are supporting her.) and her doc said they usually dont even feel like anything for a few days anyway and of course first thing she said was i want a drink of apple juice. she hasnt stopped asking for something to drink and something in me says this will be a long few days if she has already started this. she still continues to be polite and say thank you to her nurses and docs even though they hurt her. We thought her NG tube would be removed and it was but a new one was inserted for different purposes which was a bit of a new tool in the box. its to suck all the stuff out of her stomach i guess, they really dont want anything getting through for the time being. she has a tube coming out of her new stoma port draining into a urine bag and on the other side another tube coming out to drain urine from another way so no chance that her bladder can do anything but heal. those will be in for many more weeks to come and will go home with us. they poked her a gazillion times in the OR to get a second IV line in, they didnt do pic line until the end of the procedure. i counted 5 additional locations since yesterday. her blood pressure has been high since we arrived, attributed to anxiety and it maintains to be high. i think that is the short jist of how things are. all her vitals are stable. she is on a morphine drip for pain. and many other meds.

i have had a few doubts this afternoon that i, that we, have the strength to get through, i feel broken for the first time in many years. i also cant help but second guess what i have gotten myself into, knowing that the decision mostly rested on my shoulders. its hard to bear that weight and not wonder what have i gotten us into. i cant help but turn to the Savior, its the only measure of strength left and reliable. i reflect on saylors desire to drink and the Saviors words to his own father to "take this cup from me."

i want a drink ...

surgery in process

i feel overwhelmed with support, love, and prayers. i dont know how to say what i feel and how grateful i am ...

surgery started at 12 ish.... it was pretty torterous to hand her to the annest while she was gripping me as tight as possible. we listened until she stopped screaming. we could hear her down the hall and in her OR ... it was hard. we are holding up ok. we walked over to the point for lunch and just discussed things while we admired the views. back in the room now waiting. i think we are about half way there.


what is the defintion of this? really? saylor is one of the most brave & courageous souls on earth. last night was difficult with all the enimas and her increasingly deterating skin on her bum. we traded off holding her and split it up pretty even, ok maybe i got to hold her longer ... but he got to be first. we went to bed at about 12 and now its about 6am. about 6 more hours tell she goes into surgery.

when her uncle aaron visited he had this little convo with her

U.Aaron - Saylor how do you think i can be a good doctor to my patients?
Saylor - tell them to be brave
U.Aaron - do you have some ideas that i can tell them of ways to do that
Saylor - first a nod and then this reply - tell them to take a deep breath and be calm thats how you be brave.

we all smiled .... thats what we tell her, she doesnt do it but obviously she listens. i know the strong power that is in her and her huge influence that is so magical, so i know that she is in aarons life right now at this exact timing when he is on rotation in utah to teach him something, and i have no doubt that he is learning and that it will make him a better doc for the rest of his life.

through all the enimas we kept saying to be brave ... finally she just yelled at us


me too!

Wednesday, August 13, 2008

how to hold down a wild animal ...

this is the calm after the storm believe it or not ...

its been a long day. started with a hic up in admitting. our instructions said to admit her to PCMC by 9am this morning and she was on their schedule yet for some reason they hadnt created a room for her on the right floor. so we did a bit of waiting in the morning shade next to the fountains out front for about an hour or so.

the morning was quiet challenging just as we had suspected with the insertion of the NG tube and an IV. we were able to get her some sedation in the form of versaid. didnt do much in the end, her inner animal overcame it pretty easily. i think all 6 adults in the room were pretty surprised at the strength within saylor and how difficult she was to hold down. such a strong kid! we got it down but not without punishment for it and the tearing of hearts.

currently all the flushing meds are being pushed through her NG and she is about half way done with them. lots of diahrea! so much fun. and one irritated bottom. her IV is doing ok its not in the best local but tomorrow during surgery a pic line will get put in. surgery will be aroud 12 or so. the surgeon is taking his easier case in the morning then the rest of the day for saylor. Aaron stopped by and spent a few hours with us and saylor even stayed with him so nate and i could leave and go pray to end our fast. i was growing very weary and had a fiercesome headache. feeling a little better now that i have just finshed dinner. Saylor also seems to be in a better mood and nate has been the rock!

saylor missed home ... and storie and stockton already!

Tuesday, August 12, 2008

oh the places we go ... like 7-11

Today was a better day. does that make sense? i was thinking the longer she was on the diet the more hungry she would be and the more she would crave real food with depth so in following the more ornery she would be. not the case. she was really pleasant and happy all day today. not much complaining at all. i also am doing much better then i expected myself to be doing ... i guess cause she is leading the way. i am calm and at peace and not near as emotional as i thought i would be (not to say i am not emotional ... i am.) i thought to get out of the house today we would go to 7-11 and get slurpee's because this is a treat saylor can have on her diet. i was astounded to realize that my kiddos didnt even know what a slurpee was .... what kind of mom am I? perhaps its the lack of 7-11's on every corner like there was when i was a kid.

so is it just me or have slurpee's changed drastically in the last few years .. ok many years. so i havent purchased one of these straight sugar shots for some time but i just remember the flavors being so much more enticing. today they had little to offer us and left all 4 of us disappointed and only one of us finishing this sugar slush supposed to be delight and that was saylor .. . i guess thats what was important in the end.

we have before surgery traditions (this is weird ...) anyhow one of them is to read "oh the places you'll go" by Dr seuss. good life book. good facing a challenge book. it reminds me of one of my dearest friends jolynn ... she gave it to me just before we left to san fran for fetal surgery. this brave woman has and does face extreme trials and she knows how to reach me like we are soul sisters, i love her dearly. i actually am very blessed to have several of these spirit sisters in my life. ok enough of that. so we read the book as a family. the kids also got their before school blessing since school starts while we are still going to be at PCMC. of course saylor also got a blessing. Peace is reverberating through out our house and all is calm. we also had family prayer. i feel like all the concerns i have had about her fear issues and her fighting the fear issues have subsided, i feel like they either will be cared for by a stronger parent (HF) or i will have the capability to do it. i didnt feel this before, i was terrified.

today the DAYTONS, STRATTONS, AND ANDERSENS stopped by with cute gifts and love. so grateful.

tomorrow we will fast with saylor for all those that need a little reminder and we are so grateful for the friends and family that our joining us in this faithful symbolic sacrafice, it means a great deal.

Monday, August 11, 2008

liquid diet

one word ... JELLO!

today was saylor's first day on her liquid diet in preparation for her surgery. i actually fooled myself into thinking that today would be pretty easy and that she wouldn't get to ornery until 24 hours into the diet. she did ok the latter part of the day, the opposite of what i thought. this morning she threw 2 separate outrageous tantrums. saylor is not a tantrum thrower, she whines but not much more than that. this evening we went to a owls game, thought that would be tricky too but she did well, she asked for a hot dog but also accepted that she couldn't have one relatively easy and settled for that she could have one after surgery some time. we got her an otter pop and some soda and she came away still smiling, so we did good. we talked her into meeting hootz the mascot by telling her he is friends with cosmo ... oh the lies we tell.

Sunday, August 10, 2008

inspirtation, fasting, peyton, & the blood of flowers


many ward members, family, and friends have asked us if we will be fasting for saylor. we sure will. Nate & I will fast on this coming wed the 13th, all day because that is when saylor will be required to fast as well so it seemed the most appropriate. not sure how onery we all will be by the end of the day, but at least we will be that way together. i have thought a lot about the power of fasting, especially because i believe her future and the outcome of this surgery is already mapped out. i have found that fasting shows Heavenly father our trust in him and our willingness to mourn with those that mourn and serve those in need of service. so if you would like please join us in thanking our Heavenly Father for Saylor in our lives and submitting to His will with faith.

the girls playing with their brand new cousin peyton marie

i recently just finished this book. i didnt like it much & i am actually not going to recommend this one, yet it was profound for me. i never regret reading a book no matter what because literature is learning. i wanted to get out of this book what i was supposed to for me right now in my life. the book is about a young lady who has fallen upon a series of unfortunate events that she believes have been brought on by the passing of a comet. it takes place historically which may have much to do with the traditions of the times but i also find it to be cultural as well. it takes place in a middle eastern culture. the young woman cultivates a beautiful talent for rug making throughout her experiences and becomes an artist in a culture that does not accept women as artists. her frustration with the challenges this presents is depicted throughout the book. the title is a metaphor in the book rather then an actual relation. but i found it to be a direct relation to what i am feeling and i realize what i am feeling is "the blood of flowers." i have been struggling this week with being accredited appropriatly as an artist. i feel like a lot of industry publishers want a piece of me but dont want to recognize who it is they are getting a piece of. i have dozens of photog friends that i adore but i still feel that just because they take a picture of someone else's art that it doesnt make it their art. i dont necessarily think that the photogs are the ones claiming credit either but they are who the magazine's and publishers give credit to for some reason. i dont understand why all art is not credited. in 2008 my work was published in almost every local to utah bridal magazine there is, yet i was only credited in a one. it appears to me next year will be more of the same and it grows frustration inside of me. the blood of flowers.

Saturday, August 9, 2008

4runner gone

nate & I take turns having the new car bug and so we usually level each other out. we have had the 4runner for almost 5 years now and loved every minute. it was getting a little worn and trashed and was reaching 70,000 miles. still i was ready to hang on to it for years to come (at least right now) then nate suggested we go look at some new cars ... he had some ideas and the bug. i agreed that we could but conditional on that we not do anything that would deter our current financial plan, whatever we decided had to leave us in the same or better financial place. this is nearly impossible when it comes to buying a NEW car so i figured no worries ... until we got to the dealership. we went on a friday night when they were closed and looked at our 3 fav brands, toyota, nissan, & honda. we both fell in love with the scion xb, great gas mileage, great price , its a toyota! and is so much better looking than the older models. so we returned the following sat (last week) to the dealer to really check it out. we were really impressed and discovered that because of how smart we had and have been about the 4runner and payments etc.. we were in a position to trade in for the scion and still be in the same place financially, possibly even a little better depending on how you look at it. so that was the agreement. the dealer gave me what i wanted ... what i thought was not doable, a brand new car with upgrades i have wanted for a while but never thought i could afford like a dvd system, ipod outlet, really really nice leather two toned, and hoppin rims. got it all. we had to be a little patient to get it thus the week long prius hiatus. but we now are ridin around in a scion xb ... just like this one.