A Baby Changes Everything: Carson's Story

I had been feeling so tired!  Kevin recommended I see a doctor if I didn't start feeling better in a few days.  I thought I should probably take a pregnancy test just to rule that out, as I knew the doctor would ask.  I grabbed two pregnancy tests from the Dollar Store and headed to work.  There, in my work's bathroom, on Tuesday, February 9th, were two bright pink lines.  I could not believe it!  Adrianna wasn't even 10 months old yet and we had battled infertility for 5 years.... there was no way we were pregnant, but the pregnancy test told me otherwise.

May 10th - It's a Boy!!!

Skip ahead to May10th, we learned that we were having a BOY!!!!!!!  We were so excited.  A prince to go along with our princess!

Carson was so amazingly strong.  His kicks and movements were so pronounced and powerful.  My tummy grew so quickly with this second pregnancy.  I knew he was going to be a big boy!

July 9th - 27 weeks, 5 days old.

I had gestational diabetes with both pregnancies.  With the GD, they needed to do frequent ultrasounds to follow the growth of our little man.  We went into our second growth scan ultrasound on July 9th expecting to hear that he was huge.  Instead, within minutes of the scan, our ultrasound tech asked if the doctors had told us there was anything strange with our scans.  Our life was forever changed from that moment on...

Sometime between 20 and 27 weeks gestation, an "unexplained event" occurred in Carson's brain.  Through the ultrasound and MRI, they noted numerous bleeds throughout his brain, hydrocephalus (water on the brain), severely damaged/dead brain tissue in a couple areas, and at the time, they believed his cerebellum had stopped growing (cerebellum is in the back of the brain).  It was the most devastating news I had ever received.  It was as though the world collapsed on top of me... there was no where I could run or hide.  There were no tears that I could shed to release the pain in my heart.  I could not understand it.  I could not fathom it.  I was beyond lost. Why Lord did you allow this to happen?

26 weeks along

Physically, the pregnancy itself, other than the gestational diabetes, was pretty uneventful.  Mentally, emotionally and spiritually, it was a daily battle.  Through ultrasound we could see Carson growing bigger and bigger, though the brain injuries remained the same.  During the 2nd half of the pregnancy, we were seeing our OB, high risk OBs, a geneticist, saw a pediatric neurodevelopmentalist, and a neonatologist.  We knew very little about what to expect with Carson.  We were told that he may not live to term.  We were told that if he was born alive and lived - that he could be severely handicapped.  But mostly we were told that he would probably be born alive but not live for very long.

We ran numerous genetic tests to try and diagnose why this happened.  They were certain it was a rare disorder where my body was fighting Carson's blood platelets. But thankfully, they ruled that out.  To this day, even through numerous tests, we still do not know the "why" behind the damage.

I have never poured out my heart to God, the way that I did during my pregnancy.  I have never pleaded, bargained, screamed, cursed, begged to God, the way I did during that time.  Taken from the story of Lazarus, "Lord, the one you love is sick" were words that I uttered many, many times.  Lord, spare the life of my son.  Lord, heal my child.  Lord, give us strength, wisdom and the ability to handle anything that comes.  It was a tough line to walk.... having faith that God could heal my son, but yet facing the reality of Carson's injuries.  I could never put into words, or even try, the emotional whirlwind during that time.  I was led to the story of Angie Smith and her husband, who were pregnant with a beautiful baby girl named Audrey who had a rare disorder.  Audrey only lived a couple hours after she was born.  Angie writes a blog, Bring the Rain, wrote a book and inspired a song that her husband and his group, Selah, sing called "I Will Carry You".  That is where I got the title of this blog from.  That song played on my iPod nearly every night as I fell asleep.

September 29th ~ On way to hospital

Towards the end of my pregnancy, Carson flipped to a breech position.  We chose not to try and flip him because of the trauma that can cause.  We were scheduled for a planned c-section on September 29th.  That day could not have gotten there fast enough, nor could we run any further from that day.  We did not know how to plan for that day.... the excitement and joy of finally meeting our son, the child I had dreamed about my entire life, and the overwhelming fear of what that day could hold for us.  Was I to give birth to my son, just to say goodbye?

Darrell 'Carson' Champine

Wednesday, September 29th at 11:04am, Darrell Carson Champine was born... kicking and screaming!  What a wonderful cry.  What a gorgeous baby.  20.75" long, 9lbs, 4oz of wonderment.  He was immediately checked over by the neonatologist and the NICU team.  He was doing great!!!  9 & 10 on his APGAR, breathing great, good coloring.  I will never forget the doctor coming over to me and telling me that "your son looks great". As he walked out of the OR, he told my mom, "there was no reason for me to be there".  We were elated.  Our son was here, he was gorgeous, he was beautiful.

We had a boat load of visitors at the hospital that day.  So many people who wanted to be there for us - no matter the outcome.  Our beautiful miracle was passed from one person's arms to another; each person just longing to hold the child that we had prayed for.

Grandma & Papa in NICU

Though he did great immediately after birth, Carson spent a week in the NICU.  He had difficulties with his breathing pattern and CO2 levels and battled with jaundice.  But after a week, our amazing doctor, Dr. Knox, felt there was nothing else they could do for him, and felt it was best for us to head home.  Even during that week, they were unsure how long we may have with our son.

Carson is 14 weeks now and is growing and thriving!  He is an amazing eater (he is HUGE!!! 18.5 lbs already), his CO2 levels are perfect, he moves, cries, coos and cuddles - all what a baby his age should do.

Our life now is filled with doctor's appointments, therapy sessions, research, etc..... it is also filled with poopy diapers, midnight feedings, two car seats, and getting to love on two wonderful children.  Each day is different.  Most days we get through the day just fine - loving on my kids, changing diapers, watching Dora, *trying* to work on tummy time. Other days (more like "times"), I feel overwhelmed and helpless; scared.  Carson, my son, I love you. (sorry, I was just looking at him so I had to add that).

So how is he doing physically?

Last week, Carson had a VP shunt put in, as his hydrocephalus began to get worse and pressure began to build in his brain.  His skull has grown very quickly over the last few weeks.  Thankfully the shunt is doing its job!  It appears to be draining fluid properly.  The shunt will be a "forever" issue we and he will have to watch and deal with.  During this first year, we will be facing the possibility of infection.  During the first two years, there is a 40% chance that he will need a revision (surgery) to his shunt due to malfunction.  His entire life, we will have to watch for headaches and others signs that will show us his shunt has malfunctioned.  But even though its another thing to "deal" with, I am so thrilled that we live in a time where shunts are an answer to the hydrocephalus problem!!!!

Carson has cortical visual impairment (CVI) and we are unsure of what he can see, or how much he can see.  Cortical means that his blindness comes from his brain, not from his eye.  Thankfully with CVI, some people have seen improvements with their kiddos through therapy, patience and time!  We are currently working with a well known vision therapist and will be seeing our Opthamologist at Children's for the 2nd time next month.  We have seen some positives lately with respect to his eyesight.  He responds to these silly red glasses I have, and an orange octopus that he got for Christmas. Carson does not look us in the eyes, or track things with his eyes. So to see him respond to something with joy, and with some resemblance of eye contact, is a thrilling achievement to witness!!!  I probably took for granted having Adrianna look at me, look around the world and take it all in.  We have definitely had our moments of sadness and disappointment that he will not be able to "take in the world" like we can.  So here we are - trying to navigate new waters of teaching him about the world through his other senses.  It feels overwhelming and daunting sometimes to take this on, but I love this boy so very much that I am excited to learn new ways to teach him about the "world" through his other senses.

Carson is so strong!  He moves both sides of his body evenly, and moves both his legs and arms which is great!!!!  We have had a couple medical folks tell us that they do see early signs of cerebral palsy and as much as he moves and kicks a lot, his muscle are slightly weaker than an average baby his age.  But as our physical therapist Eilene says, we don't worry about the diagnosis.... we just work with Carson as an individual!  For PT right now, we are working on tummy time (which he HATES with a passion), stretching his neck muscles (he only wants to look towards his left) and stretching his body so he doesn't end up in a "C" shape because of looking left.

Weekly, we meet with Nurse Pam, a Hospice nurse through the Carousel program at Providence.  We have come to love her - such a loving, wonderful, smart woman!  Very excited that this week, Carson moved off of the Hospice program, into the Palliative Care program - meaning that they feel he has a chronic disorder needing close supervision, but is no longer in decline.

We see numerous specialists down at Seattle Children's - Neurodevelopment, NeuroSurgery, Opthamology, Hematology, Audiology.  We have truly loved the care we have received from Children's.  As much as we don't want to *have* to need their services, to live so close to such an awesome hospital is truly a blessing.  I cannot imagine going through all this and living somewhere far away from such great help.

Who is Carson?

Carson is cuddly and loving. He has an amazingly sweet temperament.  He goes with the flow most of the time, but definitely will let you know when he is unhappy (ie: hungry).  Carson's name means "Fort, Rock".  He is definitely a boy with strength!!!!  I have prayed and asked the Lord to give me a life verse for him... but I have only been led to the story of Daniel and the Lion's Den.  I can see Carson already being a lot like Daniel.  A man with strength, who knows who he is in the Lord, strength in who God made him to be and his abilities.  Yet someone who is quiet, still, strong.  Someone whose faith in the Lord will keep them safe and will change the lives of those around him.


I do not know what the "plan and purpose" is for Carson and his life.  But I am so blessed that God chose ME to be his mother.  I am so excited to get a front row seat to see what he is going to do!  I love you Carson.

Selah: I Will Carry You

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness

But I know
That the silence
Has brought me to His voice
And He says

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who's chosen Me
To carry you