Wink from Heaven: Hopspital holiday day 11

Sunday, January 4, 2009

Hopspital holiday day 11

We were so relieved to find out that Caleb was RSV negative... I had a hard time sleeping last night just thinking about more weeks in the hospital! I don't think I mentioned that Caleb left the ICU late Friday afternoon! We went to a special trach/vent unit so even after having a tough day yesterday, we were able to stay!
Last night Caleb had a couple of larger seizures, so they increased his phenobarbital dose by quite a bit. As a result, Caleb was super sleepy today. He came off of the ventilator just fine and had a pretty peaceful afternoon. Dallan and I finished our ventilator training today, and we even took Caleb on a wagon ride to show we could transport him with a ventilator. It was comical to see how much stuff we had to drag with us. We just needed a baton thrower and we could have been quite the parade! Hopefully tomorrow we'll begin to discuss a plan for coming home....

3 comments:

Janene Baadsgaard said...: April,
Thank you so much for posting these updates and pictures. I feel like I can ALMOST be in two places at the same time. My heart is always with you at the hospital. Caleb was our reason for fasting on Sunday and is our reason for joy every day! I love you guys! MOM B.; January 5, 2009 at 6:56 AM
Becky said...: Can I be the baton twirler? :) He looks so cozy in the wagon. It's quite the adventure wheeling a vent around...not my most favorite past time.

Glad to hear you guys are almost heading home. All the fasting and many prayers were HEARD! Caleb is blessed in many ways, especially to have YOU as his mother. LOVE YOU!!!; January 5, 2009 at 10:37 AM
Becky said...: ps: the balloons are CUTE! ☺; January 5, 2009 at 6:23 PM

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.