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."