Friday, August 31, 2012

nil per os

NPO or nil per os is a medical term that means nothing by mouth. I love the random Latin phrases that stick around in the medical world. I finally looked up NPO during our last hospital stay. I'm continuing to learn more about our little Eves and more about adjusting expectations. We were sent home on a continuous feed for Evey's g-tube and tried to bottle feed her. Ends up the lady is still aspirating because of her sucky epiglottis(I love the way that word sounds) so we're going back to NPO status for a long while so she can get nice and strong and can swallow without all her food going to her lungs. She'll now be purely fed through her gangsta tube until further notice.

Today's lesson: I'm a glass full kind of girl, I would dare say I'm a cup runneth over kind of girl. I've been harassed my whole life that I have a magical power to create my own reality, regardless of the shiz storm around me. Today was a reminder to me to not set my standards so high. Eves knees is not going to make leaps and bounds, she's going to 'what about bob' it and baby step her way through mortality. All things will be done at her and heavenly fathers pace. Ends up I'm definitely not in charge so I might as well sit back and enjoy the ride.

This pic is a favorite. Daddy and Eves right before surgery time. I heart that guy so much!

Wednesday, August 29, 2012

Breaking out

It's always surreal leaving the hospital with Evey. As I was walking out with her today I kept looking around like you're really letting us go? Everything could not have gone better. She's officially home on no machines, just her hidden gangsta tube that we'll use at night until she slowly remembers how to eat from her bottle. She's also all done with oxygen, hopefully for forever. I also have to say burping her through the g-tube is about the coolest thing ever. I wish I had the tube with every kid. It's going to be our new trick we show everybody. From here, we hope we're all done with surgeries until her cranio reconstruction in November. We of course have all our specialist appts in between that time, but none that should require a hospital stay. Prayers were really answered, so thank you all. Owen really wants to be a doctor when he grows up, either that or a stripper as you can see below.

Monday, August 27, 2012

A question

Evey raised her hand because she had a question. "Why is there a hole in my stomach?"

She did so amazing today. Better then we could have ever imagined. We'll just be watching her levels on oxygen and learning the fun of g-tube feeding (aka her gangsta tube) and hopefully coming home soon. The doctors loved our nickname for it. Prayers were truly answered and she's getting stronger every day. Now we hope she'll be on the path to gaining more weight(never thought I'd be saying that about one of our children). Thanks for all your thoughts and prayers, we felt them and so did Eves knees.

Sunday, August 26, 2012

31

I love getting older. When I was 3 I wanted to be 18. When I was 18 I wanted to be 25 and now that I've turned 31 I'm starting to feel content in my own skin. I've never been one of those people that is a kid at heart. I was born a 30 year old, so said my parents and I felt the same way. Now, watching Zoey, I understand that, she's already this little adult. I feel like I'm becoming more legit in my 30s. Nobody takes you seriously in your 20s, but by 30s you start to get some more credibility. I can't wait until I'm in my 40s, now that's going to feel phenomenal.

Besides feeling good about my 30s this birthday was quite the reflective one. I walked around all day in awe of where I've been, who I am now, and more importantly who I want to become. I'm amazed at the love the Lord has for me. He gave me my perfect match for a husband and 4 amazing children. Evey gave me a wonderful birthday gift too. She stopped sucking on her binky this week and we were afraid she was losing her oral skills. But lo and behold, I woke up on my birthday and managed to get a few smiles out of her and she sucked on her binky like a champ all day. Presents are soooo overrated.

Tomorrow's the big day. Eve's going in for 3 procedures. It feels different this time going in for another week hospital stay. I think the ignorance of all things medical has worn off and we now are hyper aware of all the good and bad that can go wrong. Nate & I were talking about how the hospital is such a twilight zone. When you're in there it's like the outside world doesn't exist. I find myself putting the wrong years and months on forms I need to sign and when we go home to sleep, it doesn't feel real. So we went into deep thought mode and figured out why it feels that way for us. In a children's hospital the veil is so thin because you literally have these precious spirits coming and going every minute. You know there's family members ever present welcoming these children through the veil or sending them back to us through the veil. You can't not feel that strong presence. But at the same time you're so grounded in the obviousness of mortality being surrounded by all these machines and modern medicine that saves lives. You have to be aware of mortality because it's coming and going all around you. So Nate and I call it the one foot in and the one foot out phenomenon. We're literally straddling the line between this life and the next with Evey in the hospital so it makes everything else so surreal. What a nightmare it would be to be doing this without the knowledge of our savior and his plan of happiness. Because if we can't truly be happy through the "stuff" of life then what's the point.

Thank you, thank you for the many prayers. Tomorrow we'll most definitely feel them. And Nate & I pray every night that your lives are being blessed in return for all your service and prayers for us. - Cally

On a non-deep thought note, the down side of turning 31 is that I find myself leaving the house more often with my shirt inside out(me too, Kim). Good thing I have a detail oriented husband that always notices.

Thursday, August 23, 2012

Two Captains



~My oldest brother wrote this story about our 4 kids shortly after Evey was born. He's a soldier, an amazing father, a genius writer, and he also just happens to be my hero! This story will change your life, guaranteed.







Note: I’m not saying it happened this way. But it could have. But someone had to volunteer. Someone had to say, “We’ll look after them and protect them.”

Two Captains

The Captain sat exhausted on the steps staring at the empty city. She was tired. There was no arguing the point. Hunched over, her elbows resting on her knees she cradled her head in her hands. She didn’t want to stare at the vacant streets but she couldn’t help it. The emptiness was reminder of the toll the war had taken across the land.
It had been the bitterest of fights. It was not a war of invaders or foreigners but war of friend versus friend and brother against sister. Families had been rent and torn apart in a violent disagreement. It had been a civil war. The Captain herself had fought again and again against friends and loved ones.
The casualties had been a staggering 30 percent. To even say it, let alone think it caused despair to scream across the echoes of her mind. This was not the only empty city. With 30 percent casualties there were many such scattered across the land. The war had ravaged the land voiding it of life. But they had been victorious.
The victory had only just come the day before. In that final last battle the enemy had finally been forced out of the land forever. But in that victory friends and family members that were the enemy had been banished forever. The victory had assured that they could never return to this land again.
She wanted to savor the victory. She wanted to enjoy the knowledge that they had won. But she could only feel saddened by the loss of her family and friends, knowing that she had done her part to cause them to be cast out forever.
She had been stoic throughout the war. She had lead again and again inspiring her soldiers to fight on. Many times when her soldiers were almost overwhelmed she had rallied them and lead them forward. She was the first in every fight and the last to leave the battle. It was the only way she knew how to lead.
And is usual in war, surviving one battle does not gain you rest. If you are victorious you are asked to take the lead again. There were losses. But she was mostly the victor and with every victory came tougher and more painful missions. But she accepted them without complaint and took her company to the front to fight. And because they loved her, her soldiers never once failed to follow her where she lead.
But now she was alone. With no one watching she let her grief and exhaustion, overcome her. Head down, tears streaming from her eyes the Captain wept in both joy and pain. She did not wail or scream, that was not her style. She gently sobbed and let the tears roll down her cheeks. The tears dripped from her face and formed soft puddles on the steps where she sat.
She heard a shuffling of feet and a polite cough. Quickly she wiped the tears from her face and turned to look. Seeing the figure standing a few yards away she smiled. The figure advanced a few steps and paused.
With a mocking formality the figure spoke and saluted.
“Captain, this humble soldier requests permission to enter your presence.”
The Captain tried to be serious but she couldn’t help it. The figure always caused her to smile. The man was dressed as her and wore her same rank. She patted a space next to her, indicating he should sit next to her.
He moved over and sat next to her. As soon as he sat, the woman punched her companion.
“I swear if you talk to me like that again, you will pay I promise, Captain.”
“You can’t do anything to me.” He protested.
“Oh yeah, why not?”
“Because I out rank you.” He stated puffing out his chest in fake pride.
“You do not.”
“I do to.”
“Do not.”
And the old argument silly argument started. It was a running joke between the two captains. Who had been promoted first? Who had been made captain first? During the chaos and confusion it had been hard to keep track of such things. But honestly between them it did not matter, because they were the best of friends.
The two captains had been forced first, by circumstances to fight together and then later by choice. When one volunteered for a mission the other quickly followed. After so much time fighting together they were as close as brother and sister. Finally the man relented.
“OK, you win, you out rank me.”
The man reclined on the steps taking in the view that his fellow officer had been staring at earlier.
“Really, I win?” The woman asked as glancing at him.
“No, but I’m too tired to keep messing with you.” The Captain said with a smile.
“You’re a brat.”
“Yep, I know.” The newly arrived captain took in the empty streets of the city. “Quite the view isn’t it.”
“Yes, it is. I hope it was worth it.”
“It was, don’t worry. It was.”
The female captain sighed, “if you say so.”
Her companion put a gentle arm around her. “It was, I promise.”
“I know. It’s just so hard sometimes.”
“Believe me I know. But I’m more scared about the next part.”
She looks over at her friend. “You’re nervous about the move?”
He didn’t look back at her as he replied. “Wouldn’t you? It’s what started this whole mess.”
“But that’s not our fault.”
“I know. But I’m still scared.”
The move had been announced. And it had started the war. They had been told they would have to leave their paradise of a land. It was a plan they had all agreed to, but at the last moment there had been a rebellion and the civil war had started. Now that the war was over the move would still have to go forward.
Even as they sat their speaking the first ones had already left as part of the great move. It would take some time for everyone to leave. But they would all go. It was all part of the plan, the great plan that they had fought so hard for.
“I’m scared, especially for us.”
“I know, after all this to be so helpless during the move.”
The woman stood and stretched out a hand to pull her companion to his feet.
“Come on, I have an idea.”
“Where are we going?”
“We’re going to ask for help, this move is going to suck. And I want help.”
The Captain took off at a brisk pace and her friend fell in at her side. They walked away from the empty city back towards where their respective companies were camped. As they got closer they heard loud music blaring from the camp. It was loud joyful sound. It was music of victory. It was the music born from a soul that loved life.
As they got close the female Captain whispered to her friend. “Follow my lead.”
The loud boisterous music was coming from one soldier. He was playing his instrument loudly entertaining the soldiers of both companies. The soldiers of both companies were laughing at him and encouraging him to play more and more. He was a natural entertainer. He knew it and the crowd of his fellow soldiers loved him for it.
The two captains had approached. But they stood waiting out of sight of both the entertainer and the crowd. Everyone was so engrossed in the show that they didn’t notice the two officers standing to the side with stern faces watching his raucous play.
A female voice called out from the crowd. “I wanna’ hear the one about the captains.”
“Do you?” He answered.
The crowd answered as a whole shouting for the song. The entertainer changed the tune, instrument in hand he broke into a song that made light of the captains. What made matters worse was as he sang he took on an accent that imitated the voice and mannerisms of both the captains perfectly.
It wasn’t a mean spirited tune, just a comedic lark. The entertainer was singing a duet imitating both of the officers. The officers at this moment choose to emerge from where they had been observing and stalked toward the entertainer. The crowd that had been laughing and clapping suddenly went silent. Realizing that something was wrong the young soldier spun around to see what had caused an end to his performance.
Ever the entertainer and figuring he was busted, the young soldier raised his instrument over his head and addressed the crowd.
“Thank you, thank you. I’ll be here all week. Go tell your friends.”
In spite of the gravity, the crowd jumped to their feet cheering for their fellow soldier.
The male captain moved forward and wrapped his arm around the shoulders of the soldier and started to lead the soldier away.
Pretending the soldier was in trouble he commented, “Come on. You’ve done it this time.”
The soldier hung his head slightly.
“Aw, wow. It was just a song.”
“I don’t care come on.”
The female captain stopped them.
“Wait a second. He didn’t get this crowd together by himself. We both know that.”
The female captain stalked back towards the rapidly dissipating group of soldiers. She called the group to attention. Then arm raised, she pointed to a pretty female soldier that was trying to edge to the back of the crowd.
“No, you don’t. Get over here. I know you were in on it with him. You’re busted too.”
During the war the two soldiers had been a constant source of trouble. The instance there was a break in the fighting the two soldiers would be off concocting some scheme or plan to have fun. They were goofs and misfits. They were rarely serious. In simplest terms they both had spirits that loved to laugh.
But in the fight they were different. In the fight they were the first to follow their captains. In the fight all their joking and sarcasm was somehow put aside. And even though they were young soldiers they were loyal to their captains and followed them faithfully.
The singer, instrument in his hand, glared at his female friend.
“I told you we would get busted.”
“Be quiet, you’ve wanted to play that song ever since you wrote it last week.”
“You helped write it too. But did we really need that big of a crowd?”
“What are you talking about, you can’t help yourself. You loved it.”
“But you had to tell everyone.”
“It was too good of song. I had to tell everyone.”
“You think so?”
“Of course.”
As was common with the two soldiers they had been so engrossed with each other. They had forgotten that they were arguing in front of their officers.
“Will you two be quiet?” The male captain halted the two soldier’s discussion.
“Yes, sir,” The two responded in unison.
The female captain addressed the soldiers. “This is serious. We need your help. We have a favor to ask you?”
The female soldier looked at her captain, “A favor from us?”
“Yep. The move is coming.”
Both soldier’s faces became even more serious at that announcement.
The entertainer spoke quietly for the pair. “We know.”
“Do you know what we’ll face during the move?”
“Yes. They will be waiting for us.”
“The war here is over. But the enemy will be waiting for us in the next land.” The male captain spoke softly. “All of the captains will not be able to lead in the next land. We’ve had our turn. We will have to be hidden. Do you know that means?”
The organizer of the crowd whispered a question, “It’s true then? You’ll be defenseless? They’re really sending you out like that?”
They had heard the rumors. All the captains during the war were to be scattered and hidden. They would not lead. They would be crippled and handicapped. Their bodies would be disfigured and their minds would be slowed. It would seem a curse, but in reality it was just a guise. The enemy would seek and find many. But all the captains would be safely hidden during the move.
The female captain tried to hide her nervousness but as she spoke her voice caught.
“Yes, it’s true. We will be protected from the enemy, but we will be helpless to everything else.”
The female soldier stepped forward and breaking tradition, hugged both the captains.
“We’ll take care of you. I promise.” Turning, she looked at the young male soldier. “Won’t we?”
“Yeah, of course, but were doing it together.”
The male captain had tears in his eyes. “Are you sure? You won’t hate us? It is going to be tough? We won’t be ourselves.”
The young man instrument in his hand met the eyes of both of his captains.
“Don’t worry; it’s our turn now to take care of you, just like you looked after us during the war.”


The End

Tuesday, August 21, 2012

Exam study guide

Today in the midst of all my morning doctor/insurance phone calls, I decided to make a list of all Eveys' specialists that she has seen and will see throughout her lifetime for her variety of issues. I decided If I put it here I'll never lose it. So here's some further exam material for the upcoming test.

1 - Pediatrician - general check ups and well exams
2 - ENT - laryngomalacia, malformations, ear tubes
3 - Cardiologist - heart murmur, two holes in her heart vsd and pfo
4 - Plastic surgeon - craniosynostosis, recessed jaw, and submucous cleft palate
5 - Neurosurgeon - craniosynostosis
6 - Audiologist - hearing loss, left ear
7 - Geneticist - semi-annual follow ups and research studies
8 - General Surgeon - feeding tube placements and removals
9 - Neurologist - possible epilepsy and corpus callosum
10 - Orthopedic specialist - scoliosis and spinal malformations
11 - Gastroenterologist - Digestive Issues and reflux
12 - Ophthamologist - Strabismus(eyes turning in) and far sightedness
*Also on the list is the physical, speech, and occupational therapist.

My mind is a medical rolodex. It would be very presumptuous of me to say that my mental capacity is all my own (and we all know my self-esteem has never been lacking), but I know without a doubt that I'm being carried through this, because there's no way any female mind should be able to retain what I'm retaining 3 months postpartum.

I keep on mentioning it takes a "village". Here's our village. I thought I loved my parents and all my brothers and sisters, I really did. But now I realize how much I love and need them. I have the coolest "village" around.

Monday, August 20, 2012

Fancy is such a great word

Evey has a cold and the whole world has to know (my sister should know the song lyric I'm referencing). Ive decided to get technical - enter yawns here, borrrrrrring (another inside joke).

Evey has what they call ( and by they, I mean the good test takers with their fancy degrees, aka doctors) an nj feeding tube. The n stands for nasal and the j means its jejunal which means its in her small intestine. So the food goes through her fancy tube past her stomach straight into her intestine so there's no chance of refluxing it back up. Pay attention, there will be a test later. Next Monday she'll be getting a g-tube, which is short for gastronomy tube which will mean the tube will be right in her belly with a button you can open and close to feed her through. Just so you know, I'm so calling her g-tube a gangsta tube. I mean she is going to have a hole in her stomach, what's more gangsta then that.

Over the weekend we think Evey caught a cold cause she's turning purple and hacking up some awesome looking foam and saliva. A crummy cold does so much damage to these fragile kiddos. So we go into our ENT doc today for her post op follow up. He does the magic camera through the nose and we see that the swelling looks okay, but she probably does have a virus. We also see that her epiglottis (my favorite body part by the way) is enlarged and collapsing anytime her head is tip backed. For all you future Evey babysitters it means Evey cannot lie on her back at all. She needs to be changed, bathed, and slept all in the upright position. Our beloved ent doc also sneakily told us that we should wait this cold out and not run a test to see what virus she has, because if any anesthesiologist even sees that a test was ran they'll push her surgery back weeks. Genius, I love learning all of this hospital politics and bureaucracy - no one can escape work bureaucracy and politics, not even the people with the fancy degrees.

Last but not least, the occupational therapist has been seeing Eves once a week. I'm the biggest skeptic ever, so when they told me they start therapy on these babies right away, I'm like, oh yeah what are they going to do? This is me eating my words and sentences- it's mind blowing people. We could tell from the get go Evey has sensory overload. If you try holding her hand and talking to her all at once she gets pretty worked up and starts breathing rapidly and cries. So the OT(who is officially the baby whisperer) ever so quietly picks Eve up and slowly makes eye contact and then looks away when she gets worked up and then slowly brings evey's hand to her own mouth to keep up her oral movement and Evey's eyes tell it all, she looks like she's in heaven. It was genius. It was a 15min process, but she explained these kids can only handle one sensory change at a time from sight, hearing, taste, touch and smell. So you have to do one thing at a time. Good thing we already have Evey on the waiting list to Owens autism school.

I'll end on this note. When the OT was working with Evey she kept saying I just love her so much. After about 10 minutes she looks at me and says, "your little girl gives me the "tingles" , I don't know how to explain it."

Evey working her magic as usual. Im so thankful for the "tingles" I get to feel from her on a daily basis.

- Cally

p.s. there will be a test down the road, wait for it.

Saturday, August 18, 2012

The Bear

Our Eli bear truly is one of a kind. I saw this picture and thought I'd share a little about our middle child. Eli's full name is Stephen Elijah. Stephen is after my dad(papa) and Elijah comes from a promise I made to myself 12 years ago.

The summer before I left on my mission to Spain, I worked at a retirement community in Las Vegas. I worked as a lifeguard and at the front desk of the community's fitness center. I loved that job. Every Monday night a group of east coasters would come in and play bocce. There was a 92 year old man named Elijah that was a part of that group. I looked forward to Monday nights just so I could see him. He would walk in ever so slowly, come right up to the front desk, give me a wink and a smile and slowly slide a werther's candy across the desk top and then he was on his way. We had the same exchange every Monday night all summer long and we never exchanged a single word. He had such a presence about him that warmed my soul. It was that summer I promised myself that I would name a son Elijah (husband willing). I look forward to meeting Elijah after this life and can't wait to reintroduce the bear to his namesake.

Our poor Eli is such a sensitive guy. Out of everyone he seems to be the only one shaken by the bouncing around from place to place during Evey time. I know it's because he really is perceptive to the situation around him. The volatility he has now will turn into a warm, kind, caring brother that will love and care for anyone within his circle. So here's to you our Eli bear, thanks for keeping us on our toes and for reminding your old Mom that it's okay to show your emotions when you feel like it.

Wednesday, August 15, 2012

A moment...

Before I get carried away with this whole blogging world and the power of censoring what I choose, I'll tell you about a "moment" I had the other day. The first day we got home from the hospital we had an incredibly long night figuring out all of Eves' new contraptions. I woke up that next morning exhausted as did Natronius. As the day went on, so did my "moment". I started to throw myself a pity party and was walking around like a real sad sack. We were now in the daily reality of our new life with Evey and I, Cally Johnson, do confess that I wasn't quite prepared for those feelings (yes, I do have feelings that surface once a year). My moment snowballed and I turned into a real peach to the Natron that day - like always, I blame estrogen for that one.

So my "moment" turned into a whole day. At night, I finally had some time alone to drive to the store with my pathetic self when I finally thought to myself this is ridiculous I should put up a prayer already. So the 3 magic words came out...dear heavenly father - and bam - the spirit hit me like a freight train. So as you can imagine, the rest of my prayer was spent apologizing for not praying sooner and for letting my "moment" turn into a whole day.

I feel blessed to have had this epiphany this early on in Evey's life. There will be many more days where I'll have moments. They'll surely come watching her try to talk or walk or eat solids at age 3 or 15 or 25. We just don't know what tomorrow brings. My goal is to allow myself those moments, because that's mortality, but to not allow them to turn into hours, or days, or weeks. So thank you to my older sister, Evey Marie. I never thought I'd be allowed to learn so much from a 2 month old. I can't wait for the other lessons you're going to teach me in this life and the next.

On a side note, here's some good times we had today with my two older brothers and my other older sister also known as Owen, Eli, and Zoey.

Sunday, August 12, 2012

A little peace of heaven

This is what heaven looks like. As much fun as it was having time with Hospital Evey, it's magical to have the team reunited.

Nate & I are slowly learning how to become medical professionals and we've found our rhythm after a few trial and errors. Between all 4 kids we figure it'll take us an hour to leave the house and we'll still forget half of what we needed - but as long as we're happy and they're happy that's all that matters.

Speaking of heaven, while our kids were with family they learned all sorts of new things. How to brush their teeth by themselves and how to scrub their bodies. I've always been a believer in it takes a village (mostly because I'm a little on the lax side and that my other brothers, sisters, and my padres are parental geniuses). So thank you "village" for teaching my children some new skills. I only hope when it comes to dealing with wild teenagers I can impart some wisdom.

I love these pictures of the Natronius with the kids. I had no idea when getting married that you should look for a guy that was good with kids. All I knew was that he was spiritual, hot, and hilarious. So here's to you baby bubba - without whom this craziness called life would so not be worth it or fun! I love you two, three, four.

Friday, August 10, 2012

Scuba Evey






















I've never been one to shy away from a good scuba reference. Finally a reason to call Evey, Scuba Evey. Nate has been calling her robobaby, which is also very funny. Check out our new scuba master closet. It's scuba-rific!

Evey in the house. We were able to bring Evey home today from the hospital. With her groupies called oxygen and her NJ feeding tube. We had 2 hours training in the hospital and then we were on our way. When they're teaching you how to do everything at home we were both kind of incredulous, like you really trust us to do this and to not kill Evey? My brain has not worked this hard since college. Lets hope we don't blow it. We were also joking around way too much during our training. I think the nurse and respiratory therapist were really nervous about sending Evey away with the two jokesters. Evey's feeding machine is called the Kangaroo Joey - so of course Nate had to do his australian accent the whole time. We're never going to hear the end of it.

G'day Mate!

-Cally

Can someone please explain to me how to get my pictures sorted out on the blog? Unless you people are into the skiwampus picture layout.

Thursday, August 9, 2012

The little things...





















video



The kids are obviously having a hard time without us. This is Zoe's nose getting her spaghetti on while we're away. I love the dance she does in the video. Being a foodie is definitely a genetic trait. Heaven help our family down in St. George watching the fearsome threesome. I'm sure our kids are loving life and would love it if they could spend the rest of their lives being entertained by cousins and family members forever.


Evey lady is doing good today. She'll hopefully be coming home tomorrow on oxygen and a nose feeding tube(no washing bottles for 2 weeks - yah-uh!). We'll keep her at home for two weeks and let her recover from her crazy surgery and then on Aug. 27th we'll do more surgery and start all over again.


For now, I feel overwhelming gratitude. Here's a laundry list of why:


-A nurse who was an old college roommate putting a bow on Evey during her night shift.


-Neighbors mowing our lawn while we're away


-Lots and lots of brownies


-Delicious homemade meals


-Another neighbor sending their teenagers down to watch our kids on a sunday afternoon


-The countless prayers from friends and family


-A very well respected doctor telling us we're on the pedastal of parents


-A Sudanese janitor in the picu that always asks about our daughter when he comes to mop the floor


-Family watching our three toddlers for a week while we do Evey time


-Cousins who lay on the floor with our Evey and hold her hand and stare at her


-Family replenishing our food supply while we're away


-Hires Cheeseburgers


-Nieces and Nephews who sit in the car with our kids while I run into the store to do errands


-Parents who are proud of us


-A sister across the country teaching me how to blog


-A family that understands the eternal perspective that Evey's spirit brings


-A husband that loves me and is still attracted to me even when I wax my eyebrows unevenly when I'm in a rush, even though I know I look ridiculous.


Really, the list goes on and on and on and on. There was an episode of Community where they were debating whether man is inherently good or evil. I'm here to tell you without a doubt that Man is so so good.


-Cally


Sorry about the sporadic pictures, still haven't figured that out.







Tuesday, August 7, 2012

Strawberry Shortcake Ice Cream Bars...







What an eventful day, I'm sure the first of many. Evey went into the ER and then to the Pediatric Intensive Care Unit(PICU) on Sunday night for more breathing spells. We were hoping once there that they would bump up her surgeries that were scheduled three weeks out. So, they got the ball rolling and the ENT and general surgeon started to coordinate to make it happen. Needless to say the General Surgeon was out of town until tomorrow and he didn't want it to happen without him, but our ENT was leaving tomorrow and he didn't feel comfortable not doing his part because her breathing was so bad. Finally after 2 days waiting in the PICU the ENT(sorry for all the medical acronyms) decided to go and do his broncoscopy down Evey's trachea to see what was going on.


Long story longer, he gets in there and she has all this extra cartilage on her larynx and behind her epiglottis that they have to start cutting out. He also lets us know that her tongue and back of her throat are really malformed and that it could be cutting off her breathing. The weird thing is, here we have these very educated experienced medical professionals asking us what we know about the syndrome from our research. So I say, "I don't know, my friend on facebook in Europe had this type of problem with their kids". It's so bizarre to have to be educating the doctors because they dont have a clue what they're dealing with and quite frankly neither do we, unless you count our facebook group of 17 people. Thank you Mark Zuckerburg!



We are sitting in our PICU room waiting for Evey to come out of surgery, tick tock, tick tock, and a half hour goes by, then another half hour and then another hour, mind you this was supposed to be a half hour surgery at the most. So that's awesome. Then the nurse comes and says hey they told me to bring in this vent machine because she's intubated but I dont really know what's going on. 15 minutes later our nurse comes in and says you're going to have to leave and go into the waiting room because it's about to get really busy in here and we'll come get you in a little. A half hour goes by in the hall and we're thinking okay, our daughter is either dying or dead. But really, you don't think about it like that. After the fact, Nate & I talked about what goes through your mind when you're waiting in the hall thinking your daughter is dying.


Spiritual stuff: We compared notes about what we both thought in the hallway, I told him I just was overwhelmed with the spirit and the fact that she's not my little girl, she's the Lords. Whenever he decides she's completed her mortal journey is completely up to him. She does amazing missionary work here and she'll do amazing missionary work across the veil and we'll be blessed by her spirit ALWAYS regardless of where she is. Nate told me he kept having the scripture John 16:33, a quote from the Savior, come to his mind, "In the world ye shall have tribulation: but be of good cheer; I have overcome the world." He had the words "I have overcome the world" repeated in his mind over and over.


Finally we get called back and they show us Eves Knees and they had to get her all situated on her vent and get everything set up for the evening. Apparently, she stopped breathing when they tried to take her off anesthesia so they had to intubate her. They're hoping she just had a hard time coming out of her anesthesia and that's what caused her to not breathe, or it could be some other reasons. She'll be intubated hopefully only until tomorrow until they pull it out. Best case scenario, it was just the swelling and anesthesia that caused her to stop breathing and everything goes fine after pulling the tube. Worst case scenario, there are bigger issues due to her malformed throat and tongue and they do a tracheotomy to help her breathe. And away we go onward and upward. All other surgeries are postponed until we (and by we I mean the medical professionals and our facebook friends) figure out what's truly behind her breathing issues.


So why the title, you ask? I've been trying to control one aspect of my life and get out of my pregnancy "stretchy" pants and have been trying to eat healthy. I haven't touched sugar in weeks. After tonight, I told Nate, I deserve some ice cream. We walked on the grass barefoot up to the University Hospital, hand in hand, and I got a Strawberry Shortcake Ice Cream Bar. (Nate has much more discipline than me and got a beef jerky stick.) I would dare say our "treats" were well earned tonight.


Until then, the church is true and the book is sometimes blue.


-Cally


Last thought, promise. If you're ever having one of those parental moments where you want to kill your children or yourself - go to the temple and then to the Picu. It'll swiftly remind you of what really matters.

Sunday, August 5, 2012

Evey's Story

























This Blog is long overdue - special shout out to Sammy for showing me what an idiot I am when it comes to setting up a blog.


Starting from the beginning - Evey's birth story. Evey's birth was so unique, looking back now I can now understand why. All 4 of my births have been natural and each so different. Nate & I both said how we felt uneasy about Evey's birth. We weren't sure if it was because Zoey's birth was such hard work(she was posterior) or because it was our last, or some other unknown reason. We had no idea that there would be any complication with Evey before she was born. Evey's birth went like clockwork. I listened to music this time around and it was life-changing, made contractins so much easier. As I jumped into transition around 7cm, I started to cry and felt overwhelmed by the spirit. I also felt immense love for Nate. I thought it was very strange, especially because for anyone who has ever done natural child birth that's the last thing you're thinking about during transition. I got so overwhelmed during contractions by the spirit that I just started to cry. Not in pain cry, but completely encompassed by the spirit cry. Looking back now, I know Evey was surrounded by all those who love her in that hospital room and that was the spirit I felt. She came flying out without even pushing, literally! My OB said it was the first no gloves delivery that he's done in a long time. After she came out, everything was a blur. The first thing that shocked us was how tiny she was. Being 39 wks. and her weighing only 6lbs4oz was really weird considering how big our other kids were. She also wasn't breathing really well and was blue. As the nurses looked her over, we had a completely tactless nurse look at her and shout, "she has down syndrome!" She practically yelled it across the room and all of us including the doctors looked at her stunned. Why is it nurses are either the most amazing people in the world or the most loathsome, it's such a polarized profession.


Moving on...that was the beginning of the 24hrs of hell. After that nobody wanted to make the call on what was wrong with Evey, the nurses came tiptoeing into the room to check on me and all left mum. I'm sure they all knew what was going on, but no one knew quite how to act. The next morning the pediatrician looked at her and told us to emotionally prepare for her having Down Syndrome. I've never cried that hard in my life, a close second was the 9th day of Owen being in the NICU. So I cried and cried for 24hours wondering how on earth I was going to do this. I thought all the mortal thoughts that us mortals think when a crisis prevents itself. I thought about how I'd never see Evey have children or get married(very mortal thought, I know), we all know her companion and children will be hers as soon as she makes it through mortality. I wondered how on earth I was going to take care of our little autistic Owen and Evey's needs. I thought about how deprived Eli and Zoey would feel with all our attention being diverted. It's funny, how foreign and silly those thoughts seem now. So I gave myself 24 hours to mourn Evey's life and our life and then I had no tears left, for real. I had two swollen pink eyes and no tears, so my only choice was onward and upward.


A week later, the test came back negative for Down Syndrome and then became the speculation. We were given three different syndromic diagnoses until after a 5 day hospital stay they decided to run a very advanced genetic test called a SNP that looks all through the chromosomes and all the genes within those chromosomes to see what's going on. Finally came the official diagnosis. Evey has 17q21.31 microdeletion syndrome. Essentially she's missing several genes from her 17th chromosome which will cause physical and mental issues her whole life. There are less than 200 cases around the world and so far the doctors don't know of another family in Utah with this particular syndrome.


People ask all the time how we're doing and I know they're waiting for us to tell them a sad, sob story about how difficult it is and how miserable we are. But here's the honest, honest truth. After the 24hrs of hell, it has been an amazing journey. We get to feed off Evey's giant missionary spirit that just happens to be stuck in a sucky mortal shell. I love watching people hold her and look at her for the first time, it's like teaching a missionary discussion and watching the spirit touch people. I have not seen one person be in her presence and not have reverence for the pure spirit they're feeling, and this from people of all different religious backgrounds or no religious background. She's a blessing in our life and everyone that's around her. She brings a reverence to our home that we feel so undeserving of and we feel incredibly blessed to be a temporary custodian for her spirit through this earthly journey. She is the best gift our Heavenly Father could have given us.


The Latest Update: Evey had another no breathing spell this weekend, so they're officially bumping up her surgery. We'll hear tomorrow when the surgery will happen. It's looking like sometime within the next few days. During her surgery she'll have 5 procedures done. She'll have a nissen fundoplication, a gastronomy tube put in her stomach - so she can be fed through that, tubes put in her ears - hopefully to restore hearing loss in her left ear, a broncoscopy, and her larynx fixed. A general surgeon and an ENT will be performing those procedures. Her head surgery for her craniosynostosis is set for Novemeber 2nd. That's all we have on the books for now, unless something new crops up, which is pretty much a guarantee at this point. I'll update on the blog from here on out about where and when things are taking place.


A blanket thank you to friends, neighbors, and family for your prayers, food, babysitting, and warm wishes that have made hospital stays and doctors visits so manageable. I pray that Lord is blessing your lives for your incredible generosity and service that you've given Nate & I. I only hope one day that we have the opportunity to give us much as we have received these last 2 months. The church is true and the book is blue!


-Cally


P.S. I know the Lord answers prayers, a few weeks ago I was telling Nate, I wanted to put up a sign that said no visitors unless you have brownies, wouldn't you know that same day we received a package of brownies from a neighbor in the mail and some on our doorstep. Sometimes chocolate is the answer to prayers!