August 31, 2004

August 31, 2004
Hi our sweet family (and a friend or two:)
We went in for our first follow-up ultra sound today and wanted to let you know what we found out.
Aside from his brain, all of his body looks wonderful. His heart looked great, spine, tummy, hands and feet and everything else appeared to be in great shape.
He still has a significant amount of fluid on his brain. The doctor thinks that it is being caused by a blockage in one of his ventricles. One of his ventricles was extremely swollen, and one of them he couldn't see because he thought is was probably being squished by the fluid. He said this could be due to a chromosome defect or it could be an isolated problem. He said he would most likely need a shunt in either case. He also has a 2-5% chance of being down syndrome. He appears to be missing his corpus collosum (the nerves that connect the 2 parts of the hemispheres) Results from this can be insignificant- or can also cause severe metal retardation. We had an amnio today and here is our plan of action for the next few weeks.
- preliminary results from the amnio on Friday
- Final results from the amnio in about 2 weeks
- an MRI on the baby at U of U after we get the amnio results
- a consultation with a neuro surgeon at primary children's hospital (The doctor said we would be delivering at Primary children's hospital since he'll need surgery and special care once he's born)
- then a follow up ultra sound at the end of September- with one following monthly after that.


So even though there are still many unknown possibilities- we were just so relieved that he appears to have a functioning brain, and that he will have motor skills and a healthy body. We feel really blessed and truly appreciate the faith and prayers that have been offered in our family's behalf.
lots of love!
Dallan & April

We're having a little boy!

We were so excited to find out what we were having for our third child, so our kind friend offered to do an early ultra sound so that we could meet our new little family member! As we were driving to the clinic, I started to feel extremely uneasy. I asked him if he would tell us if anything was wrong. He reassured us that he would and that he would probably say something like "we'll need to talk to a doctor about this."
As soon as the ultra sound began, our first glimpse was of our baby's' head. I immediately asked "is it supposed to look like that?" Instead of seeing any brain tissue, it was completely black. Our friend said, "We'll need to talk to a doctor..." I started to cry and tried to focus on other information he gave us-- we were having a BOY!!! We were counseled to set up appointments with doctors and specialists so that we could learn more about our special little guy. Our hearts were heavy that night as we worried about our new little boy and the challenges that were likely ahead.

Within a few weeks we decided we wanted to name our little boy so that we could pray for him by name. We named him Caleb Joseph! Caleb was a righteous Israelite in the old testament who was always faithful and was known for his fearlessness in the face of overwhelming odds. He was a special friend to Joshua, and we've felt that our little baby is really close to his brothers, Joshua and Matthew. Joseph Smith is Dallan's hero, and it seems only fitting that our little hero should be named after such a special prophet for his middle name.

The beginning

Written by April Moody (Caleb’s mother)

Are you having a girl or a boy? That seems to be the most often asked question when a mother is expecting a new little one. Those who don't have a preference might respond with something like, "We just want a healthy baby" or "we don't care as long as it has 10 fingers and ten toes..." I probably would have agreed, before I had Caleb.

When we were expecting Caleb, we knew he had hydrocephalus and that his brain was missing the corpus collosum.  Other than that, we had a limited amount of information. I remember the day that a doctor called me after viewing the results of an in-utero MRI. He casually told me that Caleb was also missing one of his eyes.

One eye. Caleb only had one eye. Over the next few months of my pregnancy, it seemed that every time we learned something new, something else was missing. When Caleb was born, we soon found out he was largely missing his brain. Caleb wasn’t given a firm diagnosis.  Hydrancephaly is the closest, meaning water on the brain, and little or no brain tissue. That information wasn't the most devastating. "You'll likely have weeks before his death- take him home, there is nothing more we can do" was the most devastating.  It didn't matter what was missing. It didn't matter that he wasn't a healthy baby. I couldn't bear the thought of missing him.

Right after Caleb was born. We were told he might not make it through the night. I was broken. I felt like every cell in my body was sad.  I remember thinking "even the people who love me the most can't understand how I feel in this moment." My heart was in anguish.  Then my phone rang. A friend called to tell me about the prayer that was said in church for our family. The prayer asked Heavenly Father to comfort us because He knew what it was like to lose a son.  He knew.  It was then that I realized His son also knew. My older brother, my Savior Jesus Christ knew. He knew because He felt my sorrow in a personal moment in Gethsemane. That night as I was in and out of sleep and tears, the phrase He knows kept returning to my mind.  Understanding He knew was enough to carry me through those first hard days.

After eight days in the NICU, we took Caleb home on hospice care.  We were encouraged to purchase a burial plot and to prepare to say good bye.   We didn’t want our time with Caleb to be filled with worry and sorrow so we decided early on to choose hope!  We chose to celebrate each day we had with Caleb.  We had a birthday party for him every week and spent hours in our rocking chair soaking in his precious spirit.

The weekly birthday parties stopped after we celebrated his 6 month birthday and he became more stable, but the celebration continues!  My then 2 year old Matthew would tell everyone he met, “Do you know the doctors told us Caleb was going to die and he didn’t?  That’s the first miracle I ever saw!”  Life with Caleb is a miracle.

Before Caleb was born, we told our boys he would only have one of his eyes.  They were so worried about what that would mean.  “Don’t worry, “I would say, “He will just wink at us every day!”  Caleb’s wink is his mission.  In our family a wink means I love you.  Caleb will never be able to tell us he loves us with words, but he tells us every day with his wink.    

Through the past several years we have had numerous discussions with doctors about quality of life.  When making hard decisions for Caleb’s future we are often encouraged to consider how Caleb’s constant care affects the rest of our family.   Our lives involve oxygen, feeding tubes, trachs and medication, but caring for Caleb continually teaches us what matters most. Caleb’s spirit radiates with pure love.  He reminds us all what heaven feels like.   We haven't mourned what could have been for Caleb. He could have quickly returned to heaven, but instead he has quietly brought heaven to us.  It is okay that he has a special body.  His presence…is enough. 

We delight in his smiles, in his snuggles and in his light.  Caleb’s three brothers adore him.  They love his kissable cheeks.  They help him say the family prayer by using their special “Caleb voices.”  They go to him to find peace, and they find comfort just by curling up by him.  One of Caleb’s brothers often says, “Do you think that when Caleb is resurrected he can still have his winking eye because it’s just so cute!”  We love Caleb just the way he is.  Our family would not be complete without our Caleb. 

Shortly after he was born, one of my little boys came to me and said, “Did you know Jesus peeks in our windows?”   I know my little Caleb has been closely watched over by the Savior whom he emulates.  I have no doubt angels have walked our halls to attend to our needs.  I know our Father in Heaven is keenly aware of his little ones in special bodies and that he will not leave us comfortless.  He knows.

I am profoundly thankful for the honor of being Caleb’s mother.  Caleb’s little wink continues to teach me what matters most in the world.  The next time I’m expecting and I’m asked what my preferences are, I  won’t wish for a boy or a girl, I won’t wish for ten fingers and ten toes.  I won’t worry  about having a healthy baby,  I will just be profoundly thankful the privilege. 

If you'd like to read more about our journey with Caleb please continue to the next previous post.  Because I wasn't blogging until a couple of years ago, many posts from his first years are from my journal and family update letters.  

I hope that as you read Caleb's story, your heart will be filled with love and hope.

All my love, 

April