Heather Cole--The NICU And The "Mystery Man"

Post 2 of 4 by Guest Blogger Heather:

With postpartem 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 Noonan syndrome.  Rhyse didn't 'look like' a Noonan 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: Noonan syndrome or Leukemia.  I knew that Leukemia is a blood cancer; but Noonan syndrome?  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, Noonan syndrome 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.  I couldn't bear to see him all alone in a clear tub with no human: no warmth from a mom or dad.

When I walked into my house I always went straight into my room, dropped to the floor and sobbed and sobbed.  My daughter Maggey would always  come in and ask, "Are you going cry again tonight?"  I would always say, "Yes."  I love Rhyse just as much as I love you and I miss him.  She would tell me she would "be there" for me, whatever I needed.

Rhyse's crib is in my room.  I think that made my heart bleed all the more.  I got to the point I could not look at the empty crib at the end of my bed anymore.  It just tore me up inside.

While Rhyse was in the NICU he had two bone aspirations and two heart ultrasounds.  The heart ultrasounds did show two ASD's and cardiomyopathy.  But the heart defects were minor and merely needed to be monitored.  It was the bone aspirations that were critical in their findings.  By the second bone aspiration, the doctors determined Leukemia was looking less likely and Noonan syndrome more likely as the answer.  Although his white blood cells continued to be sky high and his platelets low, there was no evidence of Leukemia in his bone marrow.  But again, nothing was 100% ruled in or out.  These findings gave us a small breath a relief.

After many, many platelet transfusions and being fed by ng tube, the overarching issue that rose to the surface was feeding. Rhyse could receive his transfusion on an out-patient basis.  But Rhyse could not consume 50ml of breast milk in 15 minutes. That is the requirement for being released from the NICU.  Every time he failed the requirement the ng tube was put back in.

Before long Rhyse figured out how to pull the ng tube out of his nose!  As fast as the nurses would get it fed in, he worked his little arms until he grabbed the tube and yanked it out again.  It was sort of a game, and the nurses were not amused!  I did find it amusing though!  It was our first peek at Rhyse's little personality coming to the surface!

So with each day presenting feeding challenges, a lack of definitive answers, and Thanksgiving fast approaching the days drug slowly on. Every day seemed like a week.  The world was going on its merry way all around me. But my world had stopped on October 18th when this saga began.

Our parents and brothers and sisters-in-law were a wonderful support system for us.  They did all they could to keep visiting and loving and encouraging us as best they could.  We knew they couldn't understand, but they helped us not feel so alone in the endless journey.

On November 4th, Jon and I were sitting in our living room discussing how we were going to work out the logistics of another week of NICU and kids school and Jon's job, as my in-laws has gone home to Indiana and Rhyse still wasn't home.  In mid-discussion the phone rang. A nurse asked for me.  The previous day we had requested a meeting of all the doctors involved with Rhyse's care so that we may get a better picture of what was going on in their minds and what the next week would look like.  But evidently someone had decided that Rhyse was ready to go home that weekend, so the meeting did not need to occur!  

The elation we felt was palpable!  We lit up with excitement, calling up all family members to share the good news!  Rhyse was coming home the next day!  

Though Rhyse was released on November 5th, 2011, we had miles of questions to be answered and obstacles yet to be overcome.  He was released without any official diagnosis and insurance approval pending for the genetic testing that would hopefully provide an answer.  I say, "Hopefully" because even a genetic test, we were told, may not reveal Noonan syndrome.  Many of the Noonan genes had been identified, but then many have not.  He may show signs of clinical Noonan syndrome, but we were praying for a genetic confirmation that would guide Rhyse's specialists and us in the right direction for medical management: and most importantly rule out Leukemia for good.  

Rhyse was released with a JMML diganosis, but we were hopeful it was, "Noonan syndrome related JMML" (because that would mean it would be a more mild case).  No one was sure.

Two days after Rhyse was released I had to bring him back to hematology for a blood check and subsequent transfusion.  This process thrust me into the next phase of the new journey.

My biggest fear in the NICU was that Rhyse would not be able to properly bond with me as his mom.  Many of the spilled tears were because of this anxiety that wouldn't go away.  I had heard and read of so many children who were permanently defunct in some ways because of the loss of bonding time with a mother.  I am also an adoptive mother: I know first-hand what happens to a child who has never been able to bond to their biological, God-given parent and have to transfer that powerful need to another. Though I will always advocate for adoption, there are intrinsic issues with bonding that plague both adoptees and adoptive parents for life.  And I didn't want my son to deal with those pains because of NICU time.  Maybe this was irrational, but it was an emormous burden at the time.  And one more anxiety that threatened to overtake me. If it were not for the Lord, and the constant reminding through his Word that we must cast our cares on Him and receive his Peace, I don't know how I would have made it through.  Every evening I would be overrun with anxiety; each morning I would take up His peace, again.  

About the Author:  Jon and I have three kids: Leah(9) who is adopted from Kenya, Maggey(6) and Rhyse(14 mos,PTNPII). We live in Allendale, Michigan. Jon is a materials supervisor at a small HVaC company, and I am a full time mom, working only four days a month as a CENA at a local nursing home. We enjoy a very close family relationship, and have found life with a NS baby even more enriching. The challenges are many, but we face each one head on together!  

About the RASopathies Foundation:  As Heather pointed out, it is vital to have a diagnosis for your special needs child so that doctors can provide the right type of medical treatment/s.  To diagnosis Noonan syndrome, a genetic blood test must be run.  However, because researchers have not found all of the gene mutations that cause Noonan syndrome, some are left not knowing if their diagnosis is correct.  The RASopathies Foundation is dedicated to helping find these final gene mutations that cause Noonan syndrome by funding research.  To make a donation please visit www.teamrasopathies.org or email info@teamrasopathies.org.

Heather also told you about JMML and Noonan syndrome.  According to the JMML Foundation, children diagnosed with this form of Leukemia have a 50% survival rate.  However, expert doctors have found that people with Noonan syndrome and JMML have both a milder form of the cancer and a higher survival rate.  "I have spoken to experts who believe that they can study this information, to find out why this is happening, and use the results to find a treatment," Julie Jancius, CEO of the RASopathies Foundation said.  "We need philanthropists who are willing to sit down with our team of experts, look at the data and back this type of research."