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Text of the page (random words):
dn t get an oxygen reading on her we went to the ed i thought she d aspirated inhaled some vomit into her lungs when i was checking in with the ed receptionist one of the nurses walked by and saw how gray she was she picked quinn right up and took us back to a room they had no rooms open so they kicked a poor woman with a sprained ankle out of a room so we could be seen they hooked her up to oxygen and she pinked right up we had some men from our church come give her a blessing they did a chest x ray and found her heart was enlarged and it looked like she had pulmonary edema about 4 weeks earlier she d been treated for a small pneumonia and her x ray hadn t had any signs of a heart problem it was a real struggle to get an iv in her because she s so chubby and she was dehydrated the nurses tried to place the iv using ultrasound and we finally got a good line they planned to transfer us to seattle children s barlow went home to get clothes for us the staff had planned on sending us to the hospital us by ambulance to seattle it was too foggy for us to go by helicopter we had to wait for barlow to come back because he had the car seat in the car i didn t know that they used the car seat to transport a baby in the ambulance she didn t like being strapped in and she let out a little whimper that s the last time i heard her cry i rode in the ambulance with quinn and barlow drove our car the ride out went smoothly i was still in denial about how sick she was i thought she was going to be fine we d been through things like this before and she d been fine i had to ride in the front so i couldn t see quinn she was quiet and seemed relaxed through the drive i chatted with the ambulance driver and i tried to distract myself for worrying when we got to seattle they got another iv in her and started doing some tests they did a blood gas on her and i knew the numbers they read of were bad they hooked her up to an epinephrine drip to help her heart contract more effectively they did another x ray i could see it this time after i saw her x ray i knew we were in big trouble her heart took up nearly ¾ of her chest there was no room for her lungs to expand they put a tube in the breath for her put in more ivs and did more tests the dr sat down with us and explained that her heart was only working at 25 they explained that they were doing all they could but the next step was ecmo where they bypass the heart and lungs they take the blood out oxygenate it and pump it back in to the body i knew that once we got on ecmo the next step was a heart transplant quinn was not a candidate due her ags or they would have to fix the underlying problem with her heart when they told us that i knew i knew that she was going to die i tried to explain it to barlow and he was understandably upset i was still really numb i started calling my mom my father passed away 2 years ago and my sister they were going to get the first flight out of slc that they could barlow called his parents to come out to seattle children s as soon as they could after talking to some specialists and quinn s primary doctor on the phone we decided not to do ecmo they thought that was her neurological condition aicardi goutieres was the cause of the cardiomyopathy the odds of them finding a way to fix the underlying problem were very slim on ecmo she may have been in more pain and it would prolong the inevitable it was a hard decision because i didn t want to give up hope we weren t ready to let go i don t know that we ever would be we had some people from church give her a blessing and a name barlow s parents made it in time to hold her we held her and we had them extubate her take out the breathing tube give her pain medicine and stop the epinephrine she didn t cry and she didn t struggle she just didn t ever wake up they let us hold her for a long time before one of the doctors finally came in and called her time of death she d been gone for several minutes before he d come in i think they were letting us hold her one last time before hearing those words the nurses took out all the iv s the volunteer at seattle children s made imprints of her hands and feet for us another wonderful volunteer from solumination took pictures for us at some point they asked about doing an autopsy and we gave permission to use any of her organs that they could barlow s parents went to the airport to pick up barlow s brother who d boarded a plane in slc as quickly as he could barlow was exhausted and fell asleep on a couch in her room i called my mother and my sister i was alone with quinn for quite some time the nurse came in and asked if i d like to wash her i removed all of the bandages from her little body i washed away all the iodine she had so many little puncture wounds in her little arms from all the ivs i was still in such shock it began to wear off and i had a little break down i cried and cried i woke barlow up sobbing and begged to leave he checked with his parents they were on their way to the hospital with abram and wanted to see her one last time i asked barlow to stay with her while i walked around i didn t want her to be alone but i couldn t stay in that icu room for one more moment i somehow made it outside and walked and walked seattle children s has some nice grounds and was grateful for a place to walk eventually barlow s family came back and saw her one last time grandpa and grandma hardy started the long drive home abram stayed home to drive our car barlow and i had been up for well over 24 hours and were no condition to drive we said our sad goodbyes and left seattle children s we had spent so much time at seattle children s over the last year it had begun to feel like our second home i think that made it a little easier to leave her because we knew she d be treated well and with respect we picked up my mom and sister from the airport and abram drove us home it was and is the most painful thing i ve ever been through thoughfully written by lex a roo at 3 27 pm 3 comments thursday june 26 2014 elder holland my rock i ve been listening to a lot of talks by elder holland his words of wisdom have been my rock lately don t you quit you keep walking you keep trying there is help and happiness ahead some blessings come soon some come late some don t come until heaven but for those who embrace the gospel of jesus christ they come it will be alright in the end trust god and believe in good things to come god expects you to have enough faith and determination and enough trust in him to keep moving keep living keep rejoicing in fact he expects you not simply to face the future that sounds pretty grim and stoic he expects you to embrace and shape the future to love it and rejoice in it and delight in your opportunities god is anxiously waiting for the chance to answer your prayers and fulfill your dreams just as he always has but he can t if you don t pray and he can t if you don t dream in short he can t if you don t believe jeffrey r holland if for a while the harder you try the harder it gets take heart so it has been with the best people who ever lived the inconvenient messiah byu speeches feb 15 1982 jeffrey r holland you are doing god s work you are doing it wonderfully well he is blessing you and he will bless you even no especially when your days and your nights may be most challenging like the woman who anonymously meekly perhaps even with hesitation and some embarrassment fought her way through the crowd just to touch the hem of the master s garment so christ will say to the women who worry and wonder and weep over their responsibility as mothers daughter be of good comfort thy faith hath made thee whole and it will make your children whole as well jeffrey r holland thoughfully written by lex a roo at 10 48 am 1 comment beat average video i m not endorsing gnc but this video is highly motivating thoughfully written by lex a roo at 10 48 am no comments friday february 7 2014 friday fives first week in feb i have not been doing a great job of updating my blog since quinn s birth and death i ve been really withdrawn i know i need to get out and write more even if very few people read it i m hoping i ll feel better i follow a lot of blogs using netvibes and it keeps me updated i ve noted a lot of bloggers do friday favorites or friday wrap ups i m borrowing the idea of friday fives from the small things bloggs 1 well we ll start from last weekend last saturday i went to a pediatric conference at seattle children s i went with my cowork and friend darci we had a nice drive and the time flew by since we were chatting so much we learned about lots of helpful tips in treating patients i love going to these confernences i hate sitting for such a long period of time but it s worth it 2 on sunday it was my turn to teach the relief society lesson i was so nervous and it was sort of a challenge afterwards i felt like crawling under the carpet i felt i was not prepared and that it was patetic it wasn t the lesson it was my peperation 3 one of my dear sweek coworkers lost her mother it s been a long hard road for thier family and my heart goes out to her 4 crossfit barlow and i have been doing crossfit we are in the beginner class so we are building strength and technique it s 3 days a week and we crawl home in the evenings after these classes the real soreness seesm to set in 2 days later we aren t pushing around tractor tires yet but we are improving 5 yesterday i gave blood in levenworth it only took 1 hour and i was done no problem barlow and i are trying to donate regularly the only issue is that we get lots of calls thanking us and asking us to reschedule the marketing is sort of smothering http www redcross org blood thoughfully written by lex a roo at 2 49 pm 3 comments tuesday september 10 2013 worry thoughfully written by lex a roo at 2 49 pm no comments wednesday april 10 2013 hang in there thoughfully written by lex a roo at 7 00 pm 1 comment older posts home subscribe to posts atom about me lex a roo i work as a pediatric pa in central washington my husband and i have been married for about 5 years we have adopted a dog named mckay we had a beautiful little girl who was ill with a disease called aicardi goutiere syndrome and she passed away in oct of 2013 the name of my blog was thought up by my friend joy we decided if we were going to write a creative book this is the title we would use i figured i wasn t likely to write a book but i could use it for a title for my blog view my complete profile blog archive blog archive november 1 october 1 june 2 february 1 september 1 april 2 october 1 september 1 august 1 july 2 june 2 december 1 october 1 september 3 june 1 april 4 march 1 february 3 january 2 november 2 october 2 september 1 august 4 july 2 june 1 may 1 april 2 march 1 september 1 april 1 march 1 december 5 november 1 october 1 september 3 july 4 june 1 april 1 february 4 january 2 december 2 a few of my favorite people carol s corner of space the turnidge tales a lloyd life elisa and jerry kieraanne the goomba shoe mandible s blog i m back from alaska and now have the internet the stone house and one more makes four patch of heaven the black project our little family a hint of hansen courtney b photography oregon maternity birth and newborn photography the behlings amaree chloee the experiment known as my life memories of scott confessions musings of a john a disciple loved by jesus does it really matter edgar and olive miles cadie s flights of fancy for ever for always and no matter what from here to eternity mega stories lil dean fam background use this with templates template twocol html body background bgcolor background image url http i66 photobucket com albums h260 toonybug cbotb 20album back 3 jpg background position center background repeat repeat background attachment fixed margin 0 color textcolor font x small georgia serif font size small font size small text align center a link color linkcolor text 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