Wink from Heaven: June 2011

Sunday, June 26, 2011

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...

Saturday, June 18, 2011

Brothers are the Best Medicine

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.

Thursday, June 16, 2011

Moments That Matter Most

Sunday, June 12, 2011

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.

Thursday, June 2, 2011

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!

Wednesday, June 1, 2011

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 :)

Heaven sent...
We were blessed with a little boy who always winked!
Caleb's brain did not form, and doctors didn't expect him to live for more than a few weeks. After 8 days in the NICU doctors sent us home saying there was nothing more they could do. Among his various physical challenges, Caleb was missing one of his eyes. Even though he was never be able to say "I love you" with words, he told us every day with his "wink!" His little wink was a daily message of love from heaven.

Caleb’s spirit radiated pure love. He brought the love of God and light of Christ into the lives of all who knew him. Caleb’s life was a precious gift and a tender miracle. His winking eye was a daily reminder of Caleb’s deep love for all of us. Caleb could have quickly returned to heaven but instead he brought heaven to us for seven years.

Caleb was a precious gift to our family, and now it is our priveledge to live in such a way that we will be reunited with him forever.

Prayer for Caleb

(written by Caleb's Grandma in her weekly column -2008-)

In my family we have a secret code to communicate our love for each other when we are out in public. We wink. When one of us is about to perform or speak, we look for a family member’s face in the crowd. Then we wink at each other. Closing one eye and winking is our secret code for saying, “I love you. You can do it. You’re wonderful.”

About three years ago, my grandson Caleb was born into our family. He must have known before birth that he would never be able to speak to us because he was born with one eyelid permanently closed. So, he is always “winking” at us, always communicating, “I love you. You can do it. You’re wonderful.”

Caleb has one eye lid permanently closed because he is missing one of his eyes . . . and he is also missing his brain. All the doctors said he would die soon after birth. They were wrong. Caleb is three years old. He is a medical miracle. The doctors say he can’t see, hear, speak, think or move. Those who know and love Caleb understand he has his own unique way of experiencing the world and communicating his love to those around him.

After Caleb was born the hospice people told us to buy a burial plot and continually warned us of his imminent death. We soon learned you can not live well in a state of fear and sadness. We decided we could spend Caleb’s entire life anxious and scared he might die at any moment, or we could celebrate each day we were blessed to have him with us. In the beginning, my daughter April celebrated Caleb’s birthday every week instead of every year with balloons and cupcakes because we simply did not know how long we would have him with us. We stopped the cupcakes after we gained ten pounds, but the celebrating goes on.

We all prayed for a miracle when we first learned about Caleb’s condition. We got one. Caleb’s birth, life and mission have had a deep and lasting impact on our lives. His spirit, eternal identity and most of all the loving, individual relationship he has with each of us is truly a miracle. Because of Caleb we know that each of us has a divine purpose and that the physical body is a sacred gift we should never take for granted. We better understand the worth of a soul and the resiliency of the human spirit.

Caleb’s five year old brother Matthew said, “Grandma. The doctors said Caleb was going to die, but he didn’t. That’s the first miracle I ever saw!”

Sometimes Caleb’s baby brother Mitchell pulls out his feeding tube while they hold hands riding together in their double stroller. Sometimes the only intervention that can get Caleb’s heart rate up is when his older brothers Josh and Matty crawl in his crib, hug him and sing, “I am a Child of God.” ...If you have a moment please offer a prayer for the little boy who has never been able to utter a single word and yet has taught everyone who knows and loves him – all the secrets of a rich and meaningful life.