Over the last few years, I've been on a journey.  Let my flow take me to the new discoveries I've needed at the time.  Over the last few months however, I've been putting a lot more effort into discovering tools and learning techniques in dealing with every day life.

I enrolled in yoga teacher training, and began seeking help from a therapist.  I knew there were things I was dealing with on a daily basis; I felt like I had a few roadblocks in the way of living a truly fulfilling life.  Before this I really had no way to identify a need inside of me.  I was typically a large jumble of emotions, never feeling like anything I did or anyone else did would be enough.  I felt unloveable.  I had an insatiable appetite for more.   More life, more breath, more chinese food, more anything that I could get my hands on.  I was always waiting for what was coming next, what was around the corner.  I had two coping mechanisms that had helped me get through some major life trials:  suppression and numbing.  My brain had gotten stuck on using these coping skills in almost every light stressor.  I realized that I wanted to branch out to learn different coping techniques.  And can say "thank you" to the coping mechanisms I've had in the past, because they helped me get through many many trials.  But as other survivors of trauma with PTSD can attest, I'm seeking ways to find other coping mechanisms.  

I feel like I've spent a lot of time building bricks and foundation.   So far, I've been learning little things here and there.  Things like; yoga is my grounding balance.  Harry Potter can always distract from reality.  Best friends will always be a phone call away.  It's okay to reach out to others.  Chinese food is a coping mechanism.  Puppies are a coping mechanism.  Bubble Baths can be refilled over and over once hot water replenishes.  Sunshine is happy.  I am surrounded by love.  I am a powerful sorcerous.  The water will always call my name.  Going real fast on a road or dirt makes me feel alive.  Puppies love to lick tears.  A good cry feels AMAZING.  Getting a tattoo or my hair done makes me feel fresh.  Sometimes sleeping pills are necessary.  Buffy the Vampire Slayer always makes me feel empowered.  Protein drinks are powerful for when you have no appetite.  Purple and blue are my favorite nail colors.  I like to clean naked.  I lose myself in service.

All of these bricks and foundation are starting to find their home in the path that I'm building.  I'm starting to know when I need certain things.  Starting to pave that path with these valuable bricks I've been spending years making.

The greatest lesson that I've learned from a few months of therapy has been to stop judging everything I do.  I'm learning I don't have to try to validate or justify my own feelings and emotions.  They're my feelings and emotions.   I'm starting to be able to identify a need when it comes up, and I have some pretty awesome tools to use when that happens.  When I'm confronted with something negative, instead of hiding or shutting down (as was a way of coping in the past), here's the new gameplan (that will take a LOT of work).  (with strategies taught by Thich Nhat Hanh with an added "Amanda Grace" twist)
1) Say hello to this need and emotion.  Get REALLY curious, and honor that emotion.  (and realize that now might be a time to step away from a conversation until I can get my emotions back to a rational realm.  "Oh hello, abandonment button, let me take a moment to get really comfortable with you.")
2) Get to know the thought or emotion-- is it anxiety about the future, self-judging, bad memories?  Become very clear on the specific upset by identifying the exact thought that's adding discomfort.
3) After getting to know the thought, figure out the exact emotions that come up when I think of that.  What do they feel like?  Is my chest tightening?  Is my stomach turning?  Where is my breathing?
4) Once clearly identified, close my eyes (if appropriate) and put a picture to those thoughts.  Do they create colors, shapes, figures?  Are they abstract or clear?  It's important to let the thoughts and emotions create this imagery while I become aware of what they are.
5)BREATH (it's so much easier to suppress or distract myself from these emotions- or just think of something super positive)
6) VERY IMPORTANT.  Once I have the mental image in my thoughts and I can see what they look like (even if there's no image at all) picture myself holding the image (or lack thereof) in the way a mother holds a newborn baby.  Picture the image of my painful thought and emotion wrapped in a warm blanket, being held with very loving care closely to my heart, and extend these feelings and thoughts my very sincerest of compassions from my heart center.
7) Mentally, (or verbally) I'll say to the image that I know it's there and I promise to care for and hold it with compassion until it's ready to go, said from a very sincere place in my heart.

Through bringing our attention to the image of our painful thoughts and emotions, and tending to it with an open heart, we're doing the most natural thing we can -- -expressing LOVE.  Instead of ostracizing our uncomfortable thoughts and emotions and their unpleasant effects, we show them pure love, complete and inclusive love.  It's a love they've never known before.

After taking this process to recognize my feelings and needs, it's then time to show myself a little bit of self love, by using one of the bricks of strength I've been building.  Hop in the bathtub, cuddle some puppies, call on a friend, ask for something that I need from another person, do a few yoga poses, or just drink some water.  Choose to do something that is purely out of self love that will help shift my focus in a new direction.

I have 28 years of past needs that weren't met that have a tendency to pop up with the mention of a word, a sight, even a smell.  Instead of feeling bombarded and begging those around me to fulfill those needs, I have some beautiful tools to look into that needs face and really figure out what's going on.  This is a process that I know won't be easy.  It's a path that I know I'll be slow on, and fall off at times.  It's a path that feels has been brought into my life when I'm ready and needing a new way to cope and heal.

In 2009, at 22 years old, I weighed 205 lbs.  (As reference, I'm 5'6").  I was a size 18 (ish).  I was in a very unhealthy abusive relationship.  I was in a brand new city with absolutely no friends close by.  I was completely stuck.  There was no such thing as progression in my life.  It felt like every day was just another step, on a very autopilot destination to "somewhere else" though I had no idea where that somewhere else was.
On July 31st, I wrote a blog about a new "fad diet" my coworker was doing, that I decided "well why the hell not".  The diet was called HCG, and basically consisted of a mind blowingly low caloric intake (500 calories a day.... a DAY!).  It was a tough battle, but of course being on that restriction made it so I lost weight.  Drastic weight.  In about 51 days of that diet, I was transformed to 155 lbs.  (Might it also be noted that I weighed 193 when I started, as I'd managed to drop about 10 lbs on my own just by not eating out for a few months previous when I was buying my house.)  I was a size 10.  I hadn't been a size 10 even in high school.  This was the "smallest" I'd ever been since most likely junior high or even elementary school.
Five years later, I'm finding I'm still healing my body along with my soul.  I've had a very poor body image my entire life, and I've been putting a lot of work into reversing that over the past five years.  Today I hoover around 140 lbs (though honestly I try to not weigh myself as I go off of how fit I am, and how my body feels) and a size 6.  I do a lot of yoga.  All of the hobbies I've adopted are pretty physical in nature (try seeing how hungry you get after an entire day of snowboarding, or after biking for 30 miles).  I am living my life so colorfully.  I don't have to say no to trips climbing or kayaking because my body just isn't capable.  I'm able to say yes to so much "living".  It completely blows my mind when I look back on where I was, and can appreciate where I am today.  If I was able to turn my life around when I was in a place of such darkness, it makes me stoked to see what I can accomplish when I'm in such a healthier spot.
Five years ago I decided to take a shot at taking my life in a new direction.  Five years ago, my life was changed completely.

Well, this past month has just been filled with life experiences that I have to ask myself "why in the world have I not experienced these things yet?!"  Mind boggling epicness.  The two events in particular that I'm referencing are Joe's Valley for bouldering and the mountain brewers beer fest.  These are things (errrrrr, places!) that became two of my very favorite things the first moment I was even there.  As proper essay dictates, I will now go into detail on these events, in chronological order:

Joe's Valley for Miss Bonnie's Dirty Thirty!  (Bonnie's my BFF, in case any of you are new to this blog)
We left after work on a Friday, piled into Dave's truck and began our journey.  I'm a social climber-- I'll freely admit that.  I like to climb, however I've never had the motivation to actually become GOOD at it.  But I love the social aspect, and watching people I love power up some really amazing moves.  I'll hop on a wall and climb as well, but I just don't have the guts or motivation (and I'm totally fine with that).  We all went to bed pretty early Friday, as we wanted our energy for Saturday's shenanigans.  Woke up Saturday, went into town to grab some breakfast, and then went off to "new Joe's" (a part of Joe's valley that is a great starting point).  We bouldered all day long, I got halfway up a problem!  And then jumped down (in my defense, I was only 2 weeks out of a sprained ankle-- and I just kinda suck) But I got some REALLY cool pictures of everyone else :)  After climbing we headed back to camp- we prepared food, played hammerschlagen (oh my, such a fun camping drinking game), and just dinked around.  That night was Bonnie's party.  Have you ever hula-hooped in the moonlight, with a fire lighting your steps and a LASER show happening on the dance (dirt) floor?  You haven't lived then.  I mean it's that simple.  Impromptu dance session in the desert, complete with lasers and hula-hoops equals living. We definitely welcomed in Bonnie's thirtieth year with so much pure happiness, love, and positive vibes- that she should be set for life.  Joe's Valley is a beautiful place.  However I feel truly confident in me saying that the people I was with made this trip what it was.  Such positive, happy, and just plain amazing people to spend my time with.  People who I value and have so much respect for-- and who can get down in the desert.  I feel truly fortunate to have this hippie family in my life.

Shane (top left) Bonnie (top right) Scott (bottom left) and Heather (bottom right)

Beer Fest!!!!!!! This is an annual trip for my group of friends who refer to themselves as "Team Awesome" (a VERY fitting name).  They've been planning it months out now.  I'm lucky enough to get invited to such great events, they are SO welcoming, caring, and just a great group of people to know.  Here's a good synopsis of the actual beer festival.  Imagine two circus tents filled with all of the beer you can drink for one low price of $25.  I'm not joking.  All the beer you can drink..... and GOOD beer.  Craft beer.  I'm a light weight, a very light weight.  I was drunk within the first 30 minutes.  Everyone very quickly became everyone's best friend.  Strangers were hugging and telling each other they loved each other.  The porta potty line became a fun and friendly competition to see who could get in the door first (and was oddly well organized for a mass of drunk people).  There was great food, GREAT beer, and the sun was shining (without shining TOO hot).  Within five minutes there, I was asking myself "how did I never know this existed?!".  The festival is held in Idaho Falls every June, that's only 2.5 hours from my house.  So let's scoot back to the actual trip, now that I've tried to paint the epicness of circus tents filled with beer.  Ryan and I (you may remember him from my previous post) went up Friday night, checked out the town, and then went back to "party" with my peeps.  (by party, I mean I had a beer and a glass of wine and put on a puppet show for everyone).  Saturday was the festival, and Saturday night I was just plain pooped.  The weekend was filled with amazing people, delicious food, and sooooooo much beer.  I will definitely be adding this on to my annual tradition registry.

And then there's this guy

So these two events were the highlights of my May/June.  I am truly fortunate to have such amazing people in my life at this moment.  I have no doubt that whatever event I'm doing with these people in my life, they'll make it epic :)

You know what's neat?  When you see improvements in yourself..... wanna know what's even neater?  When people around you notice them as well.  Almost a year ago I wrote about a blog about "Losing yourself in a relationship".  Oh boy did I struggle with it.  I struggled a lot.  (did you notice I said strugglED?) I did.  It's still a bit of a battle, however it comes so much more natural now.  I don't think about it.  It just happens.  Now it's good to do reality checks every now and then to make sure I'm still on that path.  I slip one foot off occasionally, my mind wanders, but I'm still on that path. It seems like with every past relationship/dating experience, when a guy is REALLY into me, I just completely lose myself.  It's easier to not lose myself when it's just dating and the dude is only showing slight signs he's into me.  But what happens when a fella I'm dating sends cute texts like "Miss ya" "you're amazing" "can't wait till tomorrow".... I usually buckle and I'm at the whim of said fella.  (I do love those texts btw).  So let's scoot back to present Amanda.  I'm learning.  Improving.  Growing.  Making mistakes, but getting back up.  I start dating a guy (a quite adorable guy might I add) who is REALLY into me.  He asks me out immediately.  Takes me for bubble tea (oh boy does he know how to win points), and we start texting quite a lot.  We're both pretty busy though, so it's hard to find time to see each other.  (Please notice that I say I'm busy, and I actually keep those plans and don't cancel to go see this boy- HUGE step for me).  But it works out for him to come see a movie between his studying and my activities.  Cuddling is nice-- but then the first kiss happens.... and it's awkward.  Not going to lie, it's really awkward because of the position we're in.  We'll have to do a re-do sometime.  (PS, we did a re-do, and it was great).  So then, life happens..... busy, busy life.  I'm climbing, working, and just plain busy.  He's busy with work, studying, school, AND running a ragnar (yeah, you heard it, he's active) We're still kinda constantly texting though when we can (adorable stuff like "how can someone be on my mind this much") He comes back from Ragnar (where he ran over like 13 miles in Zions and had 4 hours of sleep in two days) and what does that cute boy do?!  He picks up my ass, and my drunk friend's asses and takes us from Salt Lake up to Ogden (again, running on no sleep, and has a final the next day).  This dude's good.  I'm still keeping my schedule, not moving things around to see him- just seeing him when it works, and I make my way to his house to hang out while he studies.  I watch some documentaries on netflix (oh boy do I love those) while he reads in a book about some sort of computer software programming internet stuffs.  We're still doing our things, living our lives without being interrupted by a new person.  We're also a bit wrapped up in each other as well.  I didn't know it was possible to do both?  So week two:  I invite him over for a date (trampoline park and dinner), but me being miss social butterfly, I invited most of my friends as well (there goes the "date").  He's a trooper and not only is fine with everything, he has a blast (as do I).  So it's been about four dates now, in quite a few different types of environments (because I really want to get to know who he is)  I feel like I'm the exact same person I was before we dated.  I think about him (a lot) but I can also focus on everything else I have going on.  This has really never happened to me where I'm able to maintain that balance while still really liking (and being liked) someone.  I'm loving it.  This is how dating is SUPPOSED to be.  Taking things slow.... making sure you actually get to know the person before jumping into commitment.  It's nice.  I'm really loving being on the same page with someone, without having to say we're on the same page.  He's out in Mexico, celebrating his graduation (just graduated with his bachelors from the U), and I get to go camping with some of my favorite people ever.  I'm able to miss him, while not obsessing about it, and spending time keeping me busy.  (he misses me too, I've been getting little messages once a day about him missing me, etc etc-- gah I love it).
In summation, it is so fantastic to see that I can identify problems I have, grow, and become that person I want to be.  This is exactly how dating should be.  I'm happy with me, with who I am, and with what I'm doing in life.  I can always improve, and I realize that.  But it's good to see the hard work I put into improvement paying off.  I'm excited to get to know this boy better to see what other connections we have, and see where it may potentially go.  There's absolutely no need to rush a river, just let it flow and enjoy the experience.  If it's true and right- it will happen and won't need to be rushed.  But no matter what happens, I'm happy with me :)  

Well, in life there are heartbreaks.  There are let-downs.  There is sadness.  At this moment, I am focusing on a romantic heartbreak in particular.  I feel it's important to address my actual feelings, so I can release them and move on to continue to be the beautiful person I am.  I'm in the "mourning" stage of a break-up.  I miss him.  I miss him immensely.  I miss the future we were building together.  I miss the affection.  I miss the fun times we had.  I just miss him.  A break-up is particularly tricky because my life is now headed in a completely different direction from where it was just a few weeks ago.  I'm convincing myself that is not a bad thing, it's just a different thing.  My goals are changing slightly, the path I'm on is changing, and I'm trying to see that things can really only go up from here.  But it still sucks.  It still hurts.  I still cry.  I've decided that once I'm able to accept that it will hurt, and figure out what I've learned, and how it will make me a better person, that will point me in the right direction of my new path.  It does make it a tad easier to know that I tried my very hardest to make things work, I did my best, and I am proud of the effort I put into the relationship.  He isn't a bad person, I don't NOT love him, however the person he is right now simply is not the person I want.  It's hard to accept that.  It takes courage to let go of what we can't control.  I'm finding my legs shaky but trying to find that courage to just let go.  So, here is what I've learned so far, and I am quite sure I will continue to discover things about myself and how I acted in the relationship.
1. I still let my relationship rule my life.  I am not nearly as bad as I once was, however I still need to focus on keeping my passions and drive alive when I am in a relationship.  I understand that I can't truly be happy in a relationship if I'm not truly happy alone.  I have really got to find that balance between making myself happy, and contributing enough to a relationship.
2.  When things are "right", they just happen.  Force is not required.  Hard work IS required in building aspects of the relationship, but the love and respect just flows.
3.  I deserve to be picky, and I deserve to be completely happy and utterly intoxicated by the love I have for someone I'm in a relationship with.
4.  I am selfish, however not nearly as selfish as I was accused of being.  I am learning to love means putting other's needs before yourself sometimes, without expecting to benefit anything from them.... I'm working on that.
5. I want to be with someone that makes me FEEL like I want to be a better person, without constantly telling me I can be better, or telling me I'm not meeting their expectations.  I want that to naturally occur, I do NOT want to be force fed a "lesson" as punishments for the way I'm acting.  I want to be motivated to be a better person by example.
6. Complacency is something I need to get rid of completely.  It needs to be gone from my life.  I need to make goals that I achieve for MYSELF.  Not for others to see that I'm doing them, but to produce real self love and acceptance.
7. I am a beautiful person, who deserves the absolute best that life has to offer.  I deserve to be true to myself and be with someone who's happiness rubs off on me and we can just be happy together.
8. I do have some childish traits inside of me.  I like to be in control of situations.  Some people have a hard time of reading how I show my love.  I have a slight temper.  I am a bit selfish.  But you know what?  These are things that don't need to DEFINE me.  I am aware that they're traits I would like to work on, and I am working on them.  They're also traits that make me into the person I am.  I deserve someone who will love and accept me for who I am, and love me for who I can become, without force feeding that to me.  The only "expectations" I need to meet are ones I set for myself.
9. Sharing hobbies in a relationship is essential.  I need to be with someone that I can go out and play with.  Having separate hobbies is just as essential because there are many times when I need space, and "me" time... I feel that is healthy for a relationship.
10. I need to be with someone who has the same financial goals as myself, that is key in working together.
11.  I need someone I can communicate with clearly, openly, and who I can work with in improving my communication skills.  Someone who is patient, and loves me not to be loved back, but just because he loves me.  Someone who is level headed and not quick to anger.
12. I am a sucker for men who rock climb and snowboard (and that's just fine)
13. I need to not rush into a relationship or onto the next step in a relationship.  The "courting" stage is very important.  I don't tend to have as much respect and adoration for someone who just showed up in my life and so I go along with it because they seem to be great.  I need to slow down.  Get to know the person for who they are before I decide to devote myself to them.

I have become a much better person after being with Taylor for 9 months.  Part of that was directly because of him.  I am grateful for the chance to be with him, and to learn so much about myself and relationships.  I love him, and I will always love him, but I understand that not all relationships work, and it isn't for lack of love.  *le sigh*

I'm trying to watch this video every day..... it's just way too damn adorable and inspirational.  Not Cool, Robert Frost!!

This is our beautiful angel, Kai

A little over 2 years ago, our family had a tragedy.  My brother lost his baby, Kai, to a very rare genetic disorder, Alveolar Capillary Dysplasia.  What is ACD? "Alveolar capillary dysplasia (ACD, also congenital alveolar dysplasia) is a very rare congenital malformation involving abnormal development of the capillary vascular system around the alveoli of the lungs. It is a rare cause of persistent pulmonary hypertension in infants.^[1] It also may be a rare cause of pulmonary hypoplasia.^[2] Until mid-2012, the only possible outcome was neonatal death, with one of the longest surviving infants living 2 months.^[3]
Babies with ACD may appear normal at birth but within minutes or hours they develop respiratory distress with persistent pulmonary hypertension.^[4] ACD does not respond to standard therapies that resolve simple pulmonary hypertension. The lack of response is an important diagnostic clue." (Thanks Wikipedia). What a horrible experience for anyone to have to go through.  My family has been pretty fortunate, we tend to be a fairly healthy family; Kai's death was the first immediate death, apart from Grandparents, that I've experienced.  It's difficult to talk about, but I want to write the memories down before they're gone.  It's been two years, and my heart still aches.
As anyone who has read my blog in depth knows, I come from a very religious family and community.  This religion has some very strict "moral guidelines".  Our sweet baby Kai was born "out of wedlock", and there were a few that saw this as an opportunity for a "lesson".  It was hurtful, unloving, and completely ignorant.  I still remember a sentence that cuts like ice "It's better if she doesn't live".  Are you serious? All because this sweet, innocent, pure-love child was born to parents who weren't married.  As you can see, I still hold some anger towards that sentence.  But if I try to put myself in the accuser's shoes, I see a life taught and lived by principles that I don't agree with. A life lived by a defining faith as to the FIRM belief that children who die are immediately sent to Heaven to wait to be reunited   So in this person's mind, it was better to not have to face a difficult life, born of sin.  (Can you see why I may be a little upset with a religion that has promoted these feelings and thoughts?  That's not what this blog is about).  The anger, disappointment, and hostility only lasted a few days.  (This was my compromise with myself, I wanted to vent and get all of this off of my chest and to release the negativity I'm still holding for what was said, baby steps).  We became a team.  A team of support, courage, and hope.  My family made frequent trips to Primary Children's Hospital to spend time with my brother, his girlfriend, and to get glimpses of our baby.  It was in the middle of the Christmas Season, but we all found time to be there.  It was a roller coaster ride; I don't remember the details.  One day she was looking good, the next they day, her stats had dropped dramatically.  It was like this for a few weeks.  (For exact details, I've copied the post my brother put on the ACDA's website about Kai's story).  My brother and his girlfriend made the difficult decision, after all other therapy was completely exhausted, to stop the support, and let little Kai pass.  Most of our family was able to be there for this event.  We waited in the room, while my brother, his girlfriend, and Kai's brother said their goodbyes.  After she had passed, we were given an opportunity to finally hold her.  The first and last time I got to hold my niece, she had passed from this life.  Her spirit wasn't in her body, but I could feel her energy in the room, stronger than I had ever been able to feel it before.  I rocked her, I bounced her, I patted her back, and ached inside at the pain of losing someone without a chance of even getting to know her.  I can't begin to pretend like I knew how it felt for my brother, but for me, it was one of the most difficult things I've ever had to experience.   That was my personal experience with her short little life. Here was my brothers: (taken from ACD Associations website http://www.acd-association.com/) 

Right before ECMO

Name: Steven Bearden
Our child's name: Kai Marie seamons- bearden
The date our child was born: 11-26-2010
The date we lost our child: 12-16-2010
The hospital where our child was treated: Primary Childrens medical center NICU slc UT
The physicians who treated our child: brook( fellow) and all the top NICU docs
Our story: little Kai was born around 5:30 on 11-26-2010 she was taken from her mommy earlie because they thought she wasn't growing and apered to be under weight. She was born vaginaly weighing 5.5 lb ( aprox. 2400 kilos) birth went great and the NICU was on standby due to concerns of underweight. well she came out WeIghing more then anticipated, NICU was let off standby at that point, one of the nurses noticed a slight heart rhythm drop for a few minutes. Kai was then taken to the nicu and realesed about 20 minutes later with all her stats back to normal and her heart was doing it's job. It was so exiting that she was ok. Amanda and I were then transferred up to the newborn nursery area were we got a room and our Babie was there trying to breastfeed. she wasent very interested and by that time, kai had gone to the nursery to get a bath. We got her back and tried to breastfeed again one more time before we attempted to sleep. Kaia nurse came in to routinely check her and Kai was a little on the cold side so she went back to the nursery to get warmed up, at about midnight Amanda felt like something was wrong with Kai, she went and checked on her in the nursurey and immediately raised a concern, Kai looke purple/blue. They put her on the spo2 and her saturation was at 70. Kai then was back in the NICU. She responded well to mild doses of oxygen and a tiny bit of nitric oxide, they thought she had pneumonia and very mild and limited pulmonary hypertension, ( she was rapidly developing severe polmenary hypertension and her stats weren't stable for long, the had to keep going up on ventilation therapy and nitric and oxygen. She coded several times and was getting chest comparative at least 4 different times, then ECMO was introduced to us and that she needed to go to primary Childrens asap. Kai and I went there in a ambulance and once we got there she stabilized and ECMO was not started, the next day her stats took another nose dive and ECMO was givin, when installing the ECMO setup the machine malfunctioned and had to wait for another machine to be set up. They got done installing the canualsvand the Venus I believe had came loose or positioned incorrectly so the ECMO was pumping in more blood then pulling out, our little Kai filled to her max and looked like a little sumo Babie before the problem was corrected. Then her bodie started to blister from all that fluid. It was so hard to see her like that and the doctors had already told us that the outlook wasn't looking very good. Little Kai faught and faught. She started to do a 180 and got most of her blisters healed and most of her fluid out. Still on ECMO the system started getting very fiberouse and clots were forming. The changed the circuit on the ECMO machine and she kept her stats up were they needed to be. A day and a half after the circuit change, it started getting very fiborus and a large clot was detected ( they were able to get the large clot out sucessfully, 2 days later she was able to come off ECMO completely and her stats were exelent, her oxygen and nitric and all her meds were being weined down and she was doing great, at that point we were so exited that our Babie was actually going to come home one day! She got off of ECMO on 12-8-2010. ( a total of 9 days on ECMO) she was our little warrior princess and a real fighter. She was stable and down on alote of therapy for 3-4 days and Amanda and I were actually sleeping back at home and not so confined to the NICU. That didn't last long and she again begun to drop stats and needed to go back up on her therapy and reached maximum therapy very quickly, they really didn't have to many answers other then the pulmonary hypertension was back with vengeance. Also maybe some sort of an infection but all cultures came back negative. The then talked to us about acd a little mOre and with a little more depth. And the FICA said that she fits the description but would need a lung biopsy to confirm. Our little warrior was starting to fill back up with fluid because her blood pressure loved the volume, they needed to get her on lasiks to get the extra fluid off, yesterday they attempted a new i v. Even though she was on morphine and paralytics the second they tried sticking her she began to crash. That was early in the morning I watched her stats roller coaster while her mommy was pumping breast milk. Kai was filling back up and when they were able to give lassies in the past few days she didn't really respond. The doctors asked if they could take a small non invasive way to get part of her lungs to get it tested for cad. amanda and I then decided( with the doctors help and advice) that we couldn't let Babie Kai fill back up on fluids and crash if they tried to take some lung. We had a planned removal of therapy for 9 am on 12-17-2010 and was getting everything in order that we needed too. Within 2 hours of deciding that kai's stats begun to roller coaster again with her oxygen levels never reaching above 95 for over a split second her saturations were hanging from 70-85 for 4 days now. We decided we had better hurry so we get a chance to control her removal and removed her from all therapy on 12-16-2010 and she passed away at around 7 30 pm. We are very saddened from this outcome but comfortable with our decision because my little Kai angel was suffering spiritually. Her will to live was the most amazing thing I have ever experienced on my life along with many many others her spirit touched. After she passed we allowed them to take parts of her lung and intestine so we could know if she had acd or not. if she doesn't have it then the acd foundation will stil get our support. We are very thankful for your website and the information we have learned from it so far. It helps to know were not alone out here. With love, angel kai, jayleb her big brother. Amanda, and steve.

Added: December 17, 2010

Try reading that without feeling some of the pain he went through.  That was her brief life.  It's been two years.  I don't think about Kai every day, but I do think about her occasionally.

I recently participated in an excellent opportunity to donate my time and money into a cause that would not only be dedicated to Kai, but contribute to an organization that was a very large part of her short life.  Every year, Primary Children's Hospital does the "Festival of Trees".   The Festival basically looks like Christmas threw up.  It fills the ENTIRE South Towne Expo Center.  I can't do the festival justice, so I'm going to let them say it in their own words."For 42 years, the Festival of Trees has been a “Gift of Love” to children at Primary Children's Medical Center.  The Festival is organized by a volunteer board of 85 women who enlist time and talents from thousands of individuals, organizations, businesses, and families throughout Utah.  Over $30.8 million has been raised for children at Primary Children’s Medical Center through the Festival since 1971, with $1,655,931.40 raised in 2011." (visit www.festivaloftreesutah.org for more details)

Date night spent making ornaments

Everything is donated.  There are multiple ways to donate from trees, wreaths, gingerbread houses, talents, and time.  This year, I decided to play big and donate a decorated large Christmas tree.  What this meant was that from August until November, this tree and most importantly  Kai were on my mind every day.  I designed and crafted most of the decorations, bought the artificial tree, planned everything, and then put everything together.  The coolest part?  It wasn't just me.  I had so many of my amazing friends donate time, and money.  I held multiple craft nights, reached out to people over facebook, contacted businesses to donate large items, and implored my best friends to help in any way they could.  It would not have been as amazing as it turned out to be without their constant support and donations.  I'm very proud to say that I have some of the best people in my life; they're truly inspiring.
So what theme did I choose? I made a Harry Potter tree called "A very Muggle Christmas" (as also anyone who reads my blog should know, I'm addicted to Harry Potter).  I figured I needed to do a topic this year of something I knew well and was confident with.I can't even account for all of the hours it took to plan, and execute this project.  I spent the early months purchasing craft supplies, searching the internet for ornament and decoration ideas, and started groups on different social media sites.  I held craft nights every week where I tempted my friends with wine and good times to come and help knock out some "filler" ornaments.  We are now pros ad modge podge.  When I was about a month out until decoration day, that's when I really started getting into gear.  I bought multiple Harry Potter items from the internet, and spent hours crafting golden snitches, stars, wands, and odds and ends.  I had people donate everything from the books and movies to the Hogwarts Express for under the tree.  There is so much more than just decorating the tree, everything has to be approved, you have to buy a specific stand, and everything must be secured by wire to the tree.  There were meetings to attend, forms to fill out, decorations to make, research to do, and then the set up.
There was an entire day dedicated to the set up.  I, luckily, did not need the entire day.  I had friends come to help me put part of the tree together the night before the festival.  I took work off the day of the setup and and met my sister-in-law at the expo center.  It was an organized frenzie of "putting this here", "moving that there", "let's just trash that idea", "oh, this will work", and finished with tears of happiness at how well everything turned out.  When it was time to go, I didn't want to leave my tree that I had dedicated so much of myself into.  I kept going back to just look.  I was simply amazed that I could make something like this materialize out of just an idea.  I showed myself what I'm capable of.  The night following set up was the silent auction where the trees are available for purchase.  I was very anxious.  I thought my tree looked good and I was happy with it, however I had no idea how others would feel.  I waited for news from a friend who attends the auction portion every year.  "Your tree sold" that's all I knew at first, which was a success for me because I just didn't want it to be a bomb.  Then I received another text "holy cow, it sold for $1,600!"  Wow.  I was elated!  I, along with all of the people who helped, just raised $1,600 for Primary Children's!  Admittedly, I was very proud and I couldn't hide it.  I shouted my success on facebook, and I went back to the festival two other times just to look at my tree.  Seeing so many other people stop and take pictures of the tree, talk about it, and see how excited they were made me feel very accomplished.  

Finished Tree!!

All of the money went straight to Primary Children's.  From what I calculated, it cost about $800 to build everything, so I'd say doubling the cost to make it was a success.  I was able to donate this tree to Kai;  Write her story (for anyone who wanted to read), and show her and others exactly how appreciative I am for Primary Children's and the life they gave my niece.  Primary Children's helps so many families.  I've been tied directly to a few volunteer projects with them when I was younger, but nothing close to the depth of this.  It takes a lot of energy, money, and love, but something I will definitely be signing myself up again for.

The box of treasures

This blog is to highlight the little life, that has affected me so much, and will continue to affect how I show my love and appreciation to all of those in my life.  To go along with this blog, I'm going to be posting pictures of our baby, some of them may be disturbing to some, but it's important to me to remember just how hard she fought, so please only scroll down if you'd like to see her journey as well.  She is our Warrior Angel.  We miss you baby Kai.

My personal favorite of Kai, right after she was born, look at that face!

This is what happened when she first started on the ECMO (it was pumping more blood in than pulling out, she more than doubled in size)

Through her journey (she received blisters from the excess fluid)

Our sweet baby, she couldn't be held while on support, and we could barely touch her.  Notice her bow in her hair, she had the prettiest bows, it was sometimes all we could do to try to make her/us comfortable and have hope

My mom, giving loves to Kai (as much as we were physically able)

Our sweet baby right after she was born, before anything was detected, sleeping peacefully