Our Story of a Syndrome:Mystery Man-- Part Four

With postpartum hormones flailing about wildly I couldn't contain my emotions.  I was a weepy mess.  

I planted myself in Rhyse's room. I told the nurses I wasn't leaving.  I would spend the first night with Rhyse--no matter what.  How could I not?  Although time with baby is highly encouraged in the NICU, sleepovers not so much.  I could tell the nurses were not happy with my decision: "moms need their sleep, too" they said.  And I said, "I just had my son yesterday, I cannot abandon him. "   

Strangers.  That is how I saw the multitudes of nurses that came and went and poked and prodded and crammed ng tubes into his nose and IV's into his small, frail body.

The first couple of days are marked on my mind forever.  My little 5 pound, 4 ounce baby was instantly coined, "Mystery Man" by the specialists and other doctors.  At first the doctors administered a couple bolus's of IVIGs, thinking his blood type was simply colliding with mine.

Some sort of protein mis-match would have been an easy answer.  But after a couple of days Rhyse's platelets and white blood cells were still out of wack, and he was diagnosed with Failure to Thrive .   From this point on the underlying diagnosis hung in the air: we just didn't have any answers.  

At seven days old Rhyse underwent his first bone marrow aspiration.  Did he have Leukemia or not?  Rhyse's hematologists and geneticist batted this conundrum back and forth, back and forth.  The hematologists couldn't come to a definite diagnoses of Leukemia.  The geneticist could not come to a definite diagnosis of Noonans.  Rhyse didn't 'look like' a Noonans baby--at least not for sure.  And not yet.

For me cancer wasn't the worst diagnosis: the worst was the "unknown."  I didn't even know which answer to hope for, if I had to choose: Noonans or Leukemia.  I knew that Leukemia is a blood cancer; but Noonans?  What in the world was that?  

Those 19 days in the NICU might as well have been 90.  Each day was emotionally exhausting, and never a clear answer.  Not to anyone's fault.  As I have since learned, Noonans comes in all sorts of sizes and shapes, and is packaged completely different for each child.  

I must pause here and interject a few words on the NICU experience itself, apart from the medical mystery we were trapped in at the time.

Each moment of every day was a myriad of emotions and anxieties and downright fears.  I don't know how to put these things that moms feel into words. I can only imagine that those who have gone through this kind of experience, "get it."  

Each morning I would see my two girls off to school at 8am.  The moment Maggey and Leah were on the bus I left for the hospital.  I was often the first NICU parent to sign in for the day.  

Driving to the hospital was an experience itself.  Never in my wildest imagination did I dream that I would be driving each morning to see my newborn son.  I ached with my entire being to get the hospital, wash up, push the oversized rocker next to his bin, scoop him up and hold him for the next 8 hours.  Some days I would eat...many days I never left the room.  I talked to him, I rocked him, I sang to him, I read him scriptures, I hugged and kissed and loved him.  

Words cannot contain the pain I experienced each day as I walked away from him, down the first set of elevators, around the corner, through the massive bridge across Michigan street, down the parking ramp elevators and into the parking ramp.  

I cried every step of the way. I cried every single day.  I couldn't walk across that bridge without tears streaming down my face.  I felt guilty for being so emotional.  But then I couldn't seem to feel otherwise.

Each evening I returned home to my family so that my husband could take the evening shift with Rhyse.  I always said, "please hold him. Don't put him down."  Rhyse rarely laid in his bin, save the night time.  I couldn't bear to see him all alone in a clear tub with no human: no warmth from a mom or dad.