Morning Snuggles

I'm not sure if there's anything cuter than seeing my little boys climb into bed with Caleb to give him good morning snuggles...

Brothers are the Best Medicine

Salt Lake Adventure Day

This past week Caleb had some follow up appointments in Salt Lake, so we decided to make it an adventure day!  While I was at Primary Children's hospital with Caleb, Dallan took the other children to hike Ensign Peak.  Then while I was at the Endocrinologist he and the kids visited the Hogle Zoo!  Caleb was a great sport and didn't complain once that our adventures were in the doctor's office.

 Ensign Peak is a prominent hill on the northern edge of the Salt Lake Valley. On July 26, 1847, two days after arriving in the Salt Lake Valley, Brigham Young and seven other pioneer leaders climbed the hill to survey the valley. From its summit they laid out in their minds the city they intended to build.

 The men fastened a yellow bandanna to a cane and waved it from the mountain peak. Brigham Young named the spot Ensign Peak. The pioneers had carried two American flags with them across the plains. Within a short time a flagpole was erected and one of those flags was flown from the peak.

Moments That Matter Most

A Full Heart

Caleb has been home for over a week, and he has improved each day!  We came home needing about 4 liters of oxygen, and now he's down to 1.5  liters.  The light has come back into his little eye, and he sneaks us sweet smiles to help us know he's okay.

Our home sounds so much better with hum of his machines, 

and we've all been catching up on snuggles and smooches!

When we were admitted to the PICU, I was sure we'd be there for weeks.  I don't think I've ever seen him so sick.  But I could also feel the power of prayer lifting our spirits.  I know Caleb was closely attended by heaven.  It is humbling to know that I am a part of a miracle that is so often the combined effort of so many heart felt prayers.  Thank you for exercising your faith in our families behalf.  Thank you for loving our little boy, and thank you for your prayers.  Our hearts are full.

HOME!

We were able to come HOME yesterday evening!  HOORAY!

I didn't tell the boys, so you can imagine their surprise when they  came home and found Caleb here! 

Caleb still needs three times as much oxygen and extra time on the ventilator, but we feel confident we can keep him stable at home while he recovers!
Our hearts are full and we feel so blessed!  We are thankful for every single prayer.  

Thank you.

 Caleb hooked up to the EEG

 He had wonderful nurses who fell in love with him.

 I loved finally being able to crawl into bed with him.

Hooray for HOME!

Moved out of the ICU!

Today Caleb was moved from the ICU to the floor!  We are so thankful for the wonderful doctors and nurses in the PICU for taking such good care of us.  Today we had a few ups and downs
Ups:
I can use my cell phone now!
I can eat in our room!
I can snuggle Caleb much easier because he doesn't have as many lines
Caleb has had dangerously low potassium levels, but the levels went up today!
My brother in law and his wife came to visit and I got to meet my little niece for the very first time!

Downs:
Caleb's lungs are pretty diminished and he had to go on the ventilator earlier than usual
He had numerous episodes of severe agitation and posturing that needed medicine to calm him
Caleb is hooked up to an EEG so that neurology can closely monitor his seizure activity

The plan for tomorrow:
Check for a Bladder infection
A possible CT scan to see if Caleb's shunt is still in tact
Closely monitor his little lungs
Lots of snuggling (if Caleb will promise not to let his diapers leak on me any more :)

Homeward Bound

Caleb has made a lot of progress and we're hoping to bring him home in the next day or so!  Our hearts have been full as we've felt the prayers offered in his behalf.  Today Caleb's lungs have become more diminished.  He hasn't had to go back on the ventilator but doctors think he'll likely need more ventilator support at home for the next several weeks while he continues to recover.  He has also had a lot of seizure activity for the past two days.  We're hoping that as he recovers, his seizures will calm down as well. 
HAPPY THINGS...
Pomegranate frozen yogurt in the cafeteria today
 Visits from people we love
Caleb lost a tooth!  (I told the tooth fairy she can come when he gets home since the PICU doesn't really appreciate glitter)
I finally got to hold Caleb today and we rocked in the rocking chair until my sitter almost grew to the seat.
We're definitely homeward bound... HOORAY!

Thinking of Ben

Today it has been a year since sweet Ben passed away.  I was blessed to have the opportunity to snuggle him and feel his amazing spirit- and he felt like Caleb.  I know that he and Caleb were dear friends before they came to earth, and I love how they found each other again even though we live on opposite sides of the country.  I know he has been at Caleb's bedside this week and has given him heavenly help.

To the dear Orton Family, our hearts are full of love for you on this tender day and always.  May your hearts be filled with love and peace.

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Much Improved and a Late Night Adventure

Dallan is spending a quiet Sunday with Caleb, and I stayed home to go to church with the boys.  He informed me this morning that Caleb was off his ventilator, and he is off all of the blood pressure medication!  Caleb has responded well to treatment and will likely be able to come home in the next few days!  Our hearts are so full of gratitude.

Yesterday I spent the day with Caleb and had a little adventure on my way home.  There was a violent rainstorm going on in Salt Lake when I left the hospital.  I like to be brave, but to be honest, driving in dark stormy weather really scares me.  I could hardly see the road and called Dallan to see if it was raining in Utah Valley.  While we were talking the tire light went on. That light goes on all time time and rarely indicates a real tire problem so I planned to continue.  I hung up with Dallan and said a little prayer that Heavenly Father would keep me safe... and almost immediately I felt like I should pull over and check the tires.  I pulled off in the last spot possible before getting on the freeway, and sure enough, my tire was almost completely flat.

I called Dallan who without hesitation packed up our other little boys and drove all the way to Salt Lake to rescue me.  He filled the tire and we decided to see how far it would go.  He drove the van with the flat and told me he'd go ahead so I could follow behind him and not be so scared.  I couldn't see the lines on the road for most of the trip home, but as long as I kept my eyes on Dallan's tail lights I wasn't afraid because I knew he would get me home.

As I followed Dallan in our little red car with the backseat full of sleeping little boys, my heart was so full of love for him.  He never once made me feel silly about not trying to get home on my own.  He just came.    He gave me a light to follow so I wouldn't be afraid.  That is who he is.  He is a quiet light who I know I can always count on to lead me home.  

I am so thankful for Heavenly Father's watchful care.  I know Caleb has been closely attended by Heavenly helpers.  I know I was prompted to pull over.  And I know he blessed me with a husband who will always come to my rescue.
My heart is full.

Steady Progress

Caleb had a good day yesterday, and he is making steady progress!  He was weaned off one more blood pressure medication, and he is slowly being weaned off the ventilator.  Doctors are still calling him the "the sickest kid in the PICU" but are really pleased that he is responding so well.  Since his blood pressure is stabilizing, they were able to give him higher dose of pain medication so he was finally able to sleep.    

Caleb fights with so much quiet courage.... I am so proud of him. 

Showing signs of improvment

Caleb had a good afternoon and showed reasonable improvement.  The Respiratory therapists are slowly decreasing his peep on the ventilator, and his oxygen saturation has been much better!  Caleb's labs are showing improvement and they were able to wean him off of dopamine!  He's still got a ways to go, but I am really encouraged with his progress.
As I watch Caleb, I am so touched by his little spirit.  When he looks at me with his red fevered little eye, I know he is trying to reassure me that all is well. Oh how I love my little boy.
Thank you for your prayers and concern for our little family.  It has really touched our hearts.

Septic Shock

Caleb is in a state of septic shock which basically means that the infection is in the blood stream and his condition is very serious.  As a result, Caleb's blood pressure is still really low and he's requiring dopamine, nor epinephrine and epinephrine to keep his pressures up.  The good news is his lungs are doing better and his oxygen saturation is much improved.  He is still on the ventilator but we feel optimistic that we'll be able to slowly wean him down.  As always, Caleb is so patient with all of the medical procedures, and he has the sweetest little spirit about him. Thank you for your love and prayers.

In the PICU

Poor Caleb is in the PICU at primary Children's hospital.  For the past several days we have been having issues with his respiratory equipment, and his respiratory rate had been slightly elevated.  We assumed it was because his equipment hadn't been working properly because he wasn't showing any other signs of illness-until last night.  He started to have blood come out of his trach, and by this morning he obviously wasn't feeling well.  His heart rate and respiratory rate were abnormally high, and his ear drum looked like it ruptured.  I took him to the pediatrician who agreed that he looked quite sick then gave him a double shot of antibiotics and prescribed another antibiotic as well.  While in the office Caleb's Oxygen saturation decreased, and he would only SAT in the low 80's on 3 liters. 
When I brought him home he continued to spiral, I had to turn up his oxygen to 5 liters and he would still only sat 77-80.  I visited with the pulmonologists and Primary Children's and they encouraged us to call an ambulance.  We decided to take him in ourselves and felt we could keep him stable enough until we got there.
Once we arrived  there was a flurry of activity to get him stable.  His blood pressure was extremely low, and he wouldn't saturate enough oxygen.  So, the rest of the afternoon was filled with lots of worries and pokes:
IV lines
Central lines
Arterial lines
Chest X rays that showed collapse of the right lung
A chest tube put in to drain fluid from his right lung
An intubation tube with a cuff placed in his trach stoma to try to get better ventilation
Lots of fluids and blood pressure medicine
PEEP on the vent at 12 at 100% oxygen
IV antibiotics and lots of tests being run.

So far it looks like he has bacterial pneumonia, and he is one sick little boy.   I've only seen him this sick once before, but that was before his trach.  At least now his trach allows him to have better ventilation without the trauma of intubation.

On a happier note:
Doctors were able to get him stable enough for us to come home and get a few hours of sleep. 
Dallan was able to be at the hospital with me.
My mom was able to watch my other little boys and keep them over night
There was Papa Murphy's pizza in the cafeteria and peach frozen yogurt!!
The attending PICU doctor who worked with us was fantastic
Our room is right at the front entrance so we can smile and wave at everyone who walks in :)


Please keep our sweet boy in your prayers!

Tender tonight

Tonight Matthew curled up on my lap and asked, "Mom, do you ever wish Caleb had a regular body?"  I answered, "Well, I think Caleb and his little body just go together- his body is a special part of his mission."  Matthew replied, "I know, but don't you ever wish he could be normal?"  I could see that he was tearing up and responded, "I bet you'd love to run around and play with Caleb like your other brothers."  "No, it's not really that."  Matthew explained.  

Then I knew.  

"Matthew," I said, "Do you want to know what hardest part about Caleb's special body is for me?  I worry that someday I'll have to say goodbye.  I worry he might die."  Matthew broke down.  "Me too."   He continued, "I just don't understand why Heavenly Father would give you some years of such great happiness, but then you might have even more years of sadness.... I just can't ever picture how it would be without Caleb...."  

We both cried.  I explained how thankful we are that we've had Caleb longer than any doctors ever thought.  We talked about how it is a miracle we've been granted the blessing to care for Caleb and feel his pure spirit every day.  We understand no matter what the future holds, our family can be together forever.  I am eternally thankful for that knowledge and testimony- 

but it's still hard.  
It's hard to have the quiet worry of goodbye in the corners of our hearts.  It's hard to know our time together on Earth might not be as long as we wish...

Matthew prays every night that Caleb will live a long time.  I do too.  That's what we plan for!  That's what we keep foremost in our minds.  But tonight I was reminded that my carefree little Matthew- quietly worries.  And my heart was a little broken.

Including Caleb

The other day, Mitchell was playing with his cousin Emma. I was tickled to find them in Caleb's room finding ways to play with him. It really touches my heart to see the ways they include him and shower him with loves!

Caleb and Tulips

You've likely heard the story "Welcome to Holland" written by a parent of a child with special needs.  In this story, the tulips always touch me because they remind me of Caleb.

Last year we moved into a new home.  The dirt surrounding our home was hard and packed, yet when fall arrived I couldn't wait to plant tulips.  I didn't know if they would grow, but the hope of the blooming tulips was enough to get me planting.

As the Spring season arrived, I saw my neighbors flower beds explode with colorful daffodils and tulips.  My flower beds were still bare. I thought maybe mine just wouldn't grow this year.  Maybe I planted them too deep.  Maybe our dirt was just too hard.  
But, as the weeks went on, I started seeing little mounds of dirt in my flower beds.  When I looked closer I could see tulip stems peeking back at me!  The tulips were slowly pushing back the hard earth and making a quiet appearance. They may have been planted too deep.  I know for certain  our soil wasn't ideal, but they grew!  They've grown a little slower than others in the neighborhood, but just this week they started blooming

just in time for a snow storm!

Every time I look at those little tulips, they touch my heart.

They had the courage to grow!

They keep blooming in spite rough weather.

They brighten the world

And they point to heaven.

Just like my little Caleb.

Easter Sunday

HAPPY EASTER

To my little boy who shines with all that Easter represents.

To Know

Lately Mitchell has been worried about strangers.  We talk about it a lot when I'm tucking him in at night.  He asks me things like, 

"How will I know if a person is a stranger?"

"How will I know if strangers are good guys or bad guys? 

"Should I just ask people if they are good strangers or bad strangers?" 

"If someone says they are a bad stranger, should I just spit on them?"  

To simplify life for Mitchell I usually tell him, "If you ever wonder if someone is a good stranger or a bad stranger come and check with me and I'll always help you to know."  

The other night he asked me, "What if Jesus comes and I don't know if he's a stranger or not- what if I don't know he's Jesus?"  I answered the way I always do.... "You can come to me and I'll help you to know."

That simple answer has brought Mitchell a lot of peace.   It has also made me ask "Am I teaching my children in a way that they will recognize the Savior?  Is my example helping them to know Him?"  

I want to live up to the confidence Mitchell has- that he can always come to me and I'll help him to know. 

To my boys:

I want you to know that we have an older brother, Jesus Christ.

I know He lived on the earth.

I know miracles happen through him.

I know He heals

I know He hears our prayers

I know He understands our hearts

I know He had a personal moment for each of us in the garden.

I know he felt the weight of our sins, sorrows, worries and heart ache.

I know He did it willingly with a heart full of love.

I know He suffered and died at the hands of those who hated him.

I know He forgave them.

I know He is risen.  

I know He conquered death.

I know we will never have to say good bye forever.

I know through Him, we can be a forever family.

I know He is anxious to help us repent and be better

I know He is always near.

I know He loves us perfectly. 

I know He wants us to follow him.

I know He will keep loving us even when we make mistakes.

I know He will pick us up when we feel broken.

I know He will bring us peace when we feel worried.

I know He is proud of you.

I know He loves you more than even I can understand...

and that's a lot.

I want you to know I am eternally thankful for Him, and I will strive each day to help you know who He is. 

Happy Easter!

Love, Mom

Great Grandmother

Dear great Grandmother

You are great indeed!

Thank you for the snuggles

Love,

Caleb

 I love you!