Not even 48 hours after my c-section, I was cleared to leave the hospital.  I was desperately longing to finally hold my son for the first time and the doctor knew it.

Walk by faith.

Upon entering the Level 3 NICU at Texas Children’s Hospital, I am instructed to wash my hands at a large washing station, a routine I would become accustomed to for the next thirty days.  I will never forget the smell of the soap or the feel of the scratchy brown paper towels.  I am led to a small room.  As I glance through the window, I see a large, elevated incubator with machines and wires galore.  I turn the corner into the room and see him for the first time. A heavenly vision.  An angel among us.  His fuzzy blonde hair gleaming under the glow of the lamp.  His perfectly round face and big blue eyes.  His tiny little body covered in monitors of every kind.  I look at the nurse and without having to say a word, she takes him out of the incubator and hands him to me.  In that moment, all is right with the world.  I realize then and there, that everything is going to be ok.  A calm and stillness envelope me.  I soak in every detail of my littlest love.  I do not see a baby with Down Syndrome.  I only see my son.  John William Martin.  My prince of peace.

Walk by faith.

After meeting with many different doctors and all of their “teams” over the next few days, we learned that John William suffered a stroke in the womb, had very low platelets and a small hole in his heart.  I tried to process the medical jargon, but all I could really focus on was being with him every second that I could, feeding him, holding him and smothering him with kisses and love.  In his first week of life, he had already charmed everyone, including all of his nurses, and had everyone wrapped around his little finger.  Family and friends took turns being with him because I could not fathom the thought of him being alone in the NICU.

Walk by faith.

I was still trying to recover from my c-section, while traveling back and forth from home to the NICU at Texas Children’s, learning all I could about Down syndrome, bonding with my new baby…all while taking care of my other two children.  Remember, I was still having concerns about some unusual behaviors Katelyn was exhibiting.  Thankfully, I had an amazing village that immediately went into action, anticipating what my family would need before we could even ask.

Walk by faith.

There is something very unnatural about leaving the hospital day after day without your baby.  It was heart-wrenching and I cried every time I had to leave him.  But what was worse was seeing the babies who we knew would not be leaving the hospital.  Oh how we ached for those parents.  So we chose to focus on the positive.  The fact that at least our baby would be coming home with us at some point.  He was improving every day.  We felt very blessed to live in a town with one of the top medical centers in the United States.  We knew he was receiving top notch care.  Little did we know that Texas Children’s would soon be taking care of not one, but two of our children.

Walk by faith.

Katelyn had not been acting like herself.  She was lethargic.  Extremely thirsty.  Having accidents during the night.  I thought maybe she was just out of sorts since John William was in the NICU and our life had been anything but routine for the past week.  I had her sleep with me to see if I could calm her nerves and comfort her.  Nothing like a good dose of snuggles with mom, right?  She went to the bathroom fourteen times during the night. I assumed she had a bladder infection.  The next morning, because I was heading up to the hospital to feed John William, I asked Cody to run her up to urgent care at the front of the neighborhood to see what was going on with her.  It was Sunday and our pediatrician’s office was closed.  So off they went.  I will never forget the phone call from Cody.  “Jen, Katelyn has ketones in her urine and her blood sugar is over 600.  We are headed to Texas Children’s.”