Once upon a time, that seems to be
the way all fairy tales begin, and
this is a fairy tale story. I dreamed
upon a star and wished for a happy
family. I wished for two little
healthy baby boys. Wished is a bit of
a strong word, hoped is more like it.
Underneath it all lies every mommy's
real hope though and that is that she
brings home a healthy baby. That was
how the dream of Max's pregnancy
began. The dream of another healthy
child coming to bless our lives. We
were blessed on September 17, 2003
with the birth of a healthy baby boy
we named Nathaniel Brinton. Nate
quickly taught us how much depth a
child adds to a family.
In 2005 we felt ready to try for
that fairy tale ending again. Once
again we fell pregnant. This time in
January. The due date for our new
little bundle was October 30th, 2006.
I was so happy and ready for this new
baby to join us. All that lay ahead
was the nine month wait. However, the
pregnancy started off with reservation
and such a dark feeling of something
being wrong. I tried to shake it off
but couldn't. I never developed
morning sickness, instead I had
cramping. An acquaintance had had this
too and her OB said it was, "just her
symptom of pregnancy."
On March 5th, we had a scare. I
had a bleed with some loss of mucous
or tissue. Pregnancy symptoms reduced
and I was sure I was going to
miscarry. My OB set up an ultrasound
for March 6th. My heart was so low as
I walked into that room. Quickly the
sonographer examined me and said, "You
have a heartbeat and everything looks
fine. I can't find a reason for the
bleed." The episode was deemed a
threatened abortion. Relieved, I went
home and entered into the second
trimester with some relief and the
common thought, "Now maybe we are
safe." I couldn't have been more
naieve.
June came with a rounding belly
and the obviousness of pregnancy. It
also brought our 20 week ultrasound
which revealed a healthy, growing
baby. Everything was just right. We
were very happy and decided not to
find out the gender as we had with our
first born. The surprise at birth of
the gender reveal is exquisite. One of
the last big surprises of adult life.
Again, we blissfully went home to
await the birth of our child.
July came like a lion and on the
seventh our world changed forever. We
had traveled to my husband's
grandparents home in anticipation of
welcoming his grandfather home from
the hospital. The day consisted of
lots of sitting and low physical
activity. After we had returned home
from the hospital and had dinner I was
helping put the dishes in the
dishwasher. I had a trickle of fluid
that I first throught was
incontinence. I went to the bathroom
and thought nothing of it. But the
trickle was persistent and did not
stop. I knew something was wrong and
that we were in trouble. We were only
24 weeks and 4 days gestation. We
called our OB's weekend service and
told the nurse what was happening. She
assured us the doctor would call us
back. We waited and no call. We called
back and she told us the same thing,
so again we waited. After forty
minutes of no call we went to the
emergency room. They verified there
that it was indeed amniotic fluid that
I was leaking. I was diagnosed with
Preterm Premature Rupture of the
Membranes, or pProm for short. I was
shaking uncontrollably, I knew if the
baby was born on that day that his or
her chances of survival were next to
none. At this point in gestation lung
development is just starting.
The ER attempted to call the OB
service as the hospital and again, the
doctor on call did not return their
calls. Finally, around midnight
transfer to University Hospitals of
Cleveland was arranged. The ER doctors
and nurses all commented on the doctor
on call's lack of response to their
phone calls. Upon arrival, we were
taken to Labor and Delivery.
Ultrasound was done that confirmed
that my Amniotic Fluid Level, or AFI,
was next to none. The doctor examining
me asked if we wanted to know the sex
of our baby. I said if we had to
deliver tonight. She said, "I don't
think we will have to deliver." That
was where my pProm education began.
Cultures were taken to determine if
infection had caused the pProm. My
cervix was examined, and it was long
and closed. However, it had been hours
since the rupture and the ER doctors
had not wanted to irritate the cervix
by examining it and induce labor or
transmit infection. Infection is one
of a pProm victim's top concerns.
Infection can be easily transmitted to
the baby and once infected labor must
be induced to save the mother's and
hopefully the baby's life.
Labor did not start for me that
night. Since this was so, we were
admitted to the antepartum unit of the
hospital. I was put on strict bedrest.
At first I could only go to the
bathroom. No showers. After a few days
went by, I was permitted a shower a
day. We were instructed that one of
two things would occur: 1) I would go
into labor on my own or 2) I would be
induced at 34 weeks gestation.
Induction at 34 weeks is to try to
avoid infection or other complications
that arise from being without
measurable amniotic fluid for long
periods of time. We were told that
every single day I could hold off
labor was critical. I was determined
to stay down and do everything I was
told to give my little one a chance at
life.
I was able to hold off labor for
three weeks. On July 28th my labor
began naturally. It was very different
from my first labor experience. I did
not feel very good and spent most of
the day sleeping. Around 11 o'clock
p.m. I had sporadic contractions, but
nothing that could be timed. I tried
to sleep. Around 3:00 a.m. I felt
pressure in my lower uterus. I called
my nurse and she attached us to the
contraction machine. She could not
locate contractions, but the pressure
was increasing for me and finally,
contractions were coming. My nurse
called a doctor to examine me. Upon
digital examination he turned white
and said, "We need to get her to the
OR STAT. I am touching the baby's
head, and he/she is plus two." *With
my first delivery I had regular
contractions that were five minutes
apart when we went to L&D. With this
labor, contractions didn't begin to be
regular until delivery was imminent.
We were taken to the OR because
the OR is attached to the NICU. At
3:26 a.m. our baby boy Max entered the
world. He was live, pink and the most
beautiful thing I had ever seen. He
was rushed to the NICU and we were
told we could see him in a few hours.
Meeting Max for the first time was
bittersweet. When we walked into his
Pod of the NICU, I noticed some
screens on wheels in the hallway that
made me uneasy. When entered his
nursery, we saw a tremendous amount of
machinery first, then the wires and
tubes, then our tiny, sweet baby
nestled in the center of it all. He
was so small, 13 inches and two pounds
one ounce, but he was perfect. He was
crying at the top of his little lungs,
and that was music to our ears. Due to
lack of amniotic fluid, pProm baby's
lungs may not develop into usable
lungs. We were extremely fortunate
that Max's lungs had developed and
that he was using them. Many times
pProm babies are born sleeping or
still as well. He was on CPAP, a nasal
canula that helped to push pressured
oxygen into his lungs. Sort of a
reminder for the baby to breath. He
had a little blue and pink striped cap
on his head and the tiniest diaper I
had ever seen. He was simply a
miniature baby, but so gorgeous and so
loved. The nurse gently moved his cap
back for us to see that he already had
a head full of blond hair. He had
Nate's nose already.
It was so overwhelming, neither of
us had a camera, and after being up
for nearly 24 hours we didn't have the
presence of mind to go to the gift
store to purchase one. Finally fatigue
gave way and we had to go lay down. As
we were leaving we told Max, "Good-
bye." Max's nurse stopped us and
said, "We never say good-bye in the
NICU, we always say see you later."
Overall, doctors were impressed with
Max's first moments. They gave us hope
that he would beat the pProm odds. He
had survived birth and he had lungs,
two miracles had occurred and we were
so very fortunate and thankful to be
the recipients of those.
That was the beginning of our
rollercoaster ride. Later that day the
NICU called and said they were putting
Max on a ventilator because his oxygen
saturation was falling. Of course we
agreed. Family was arriving to visit
Max. The day was a blur. After family
had left, we stayed with Max at the
NICU. At some point we decided to head
back to the antepartum unit to sleep.
On the morning of Max's second day
of life, we were informed that Max had
contracted E-Coli sepsis. This is
poisoning of the blood and occurs in
preemies because their immune systems
are not developed. It is very
dangerous and one of the worst things
that a preemie parent can hear. Our
little miracle was very sick. They
were administering antibiotics but
would not know if they were working
for at least 24 hours due to blood
cultures. During the day, Max seemed
to do as well as he could. That night,
however he crashed. The NICU team had
to do everything they knew to get him
through the night. Max had blood
transfusions. Somehow, they were able
to stabilize him. He had come as close
to death as a person could come. We
were told to get some rest, it was
very late into the morning of the
3oth.
Upon arrival at the NICU we were
met by one of the lead doctors. We
were informed that Max was very sick.
However, she was cautiously optimistic
that he could overcome the sepsis. She
had had a preemie who had overcome
stalph infection and had indeed been
in our shoes. We stayed with Max and
he held our fingers. We were able to
cradle his little head in one hand and
his feet in the other simulating being
held. We talked to him and prayed. At
some point in that day we were told
Max had developed Meningitis. Our
world was beginning to crumble. We
were told that we would find out on
the 31st if the antibiotics were
working. Another late night ensued at
the NICU, and eventually we slept for
a few hours.
On the morning of the 31st, we
were told that the antibiotics were
not working and the sepsis would
continue to spread. Max had also
developed a massive intraventricular
hemorrhage, or brain bleed in the
brain as a result of the meningitis.
The NICU Chief told us it was one of
the largest he had ever seen in a
preemie. One of Max's eyes was swollen
shut due to the pressure. We were
informed that we would have to make
some decisions. Our world changed
forever in that moment. Everything we
had known, hoped for, and experienced
in our lives ceased to exist. Our
lives as we knew them ended and a new
life path began. The NICU staff rolled
over the screens over to give us some
privacy with our little one while we
were in the Pod.
Eventually we were taken into a
little board room. We were presented
with our options. We could remove
support. We could employ hospice. Our
baby was going to die, it was
imminent. The hemorrhage was massive,
the antibiotics were not working, the
sepsis had shut down his bowels. He
was on maximum doses of morphine. He
was dying before our eyes. He would
never be a happy kid running around
learning his ABC's. We could not let
our baby suffer any more pain. Now I
Lay Me Down to Sleep Bereavement
Photography was contacted at our
request to take pictures of our angel
before he had to fly. Every decision
you never even consider having to make
for a child was thrust at us in a
matter of moments. It was all such a
blur.
We were put into a small room. Max
was wheeled in. I asked if we could
hold him and he was placed into my
arms. He was still a perfect, little
baby, but his color had faded to a
sick gray. He was no longer pink, he
could no longer cry due to the
ventilator. We had contacted our
family and were waiting for them to
arrive. We sang songs to Max, nursery
songs and told him how much we loved
him. They were the most precious hours
of my life. Swaddled in a blanket with
a sea shell on his chest, Max was
baptized by Reverend Warren.
Family members arrived and came in
to say good-bye to little Max. After
everyone had gotten there, we asked
them to all come in. I asked them to
sing Twinkle, Twinkle, Little Star to
Max together. Then, they would all say
a final good-bye. It was just Max, my
husband and myself. We held him and
loved him for a long time after they
all left. As we sang Twinkle, Twinkle
to him again, he opened one eye and
gazed up at us. We were never rushed
to move on and were allowed to decide
for ourselves. No parent should ever
have to make this decision. At 3:16
p.m. on July 31, 2006 Max passed away
in my arms. We were able to give Max
his first bath and dress him in a
light blue outfit with dinosaurs on
it. His small body swam in the outfit,
even though it was meant for a
preemie. On his head he wore the tiny
dinosaur cap and in our arms he
appeared to be sleeping.
The strength he had to be just be
born live amazes me to this day. He
was able to live for three days
despite being without measurable
levels of amniotic fluid for three
weeks and being born due to a
placental abruption. His lungs had
developed enough to support his body
for several hours, and had he not
contracted sepsis, who knows what
feats of life he would have
accomplished. He was a miracle, and he
was ours. Why God sent this miracle to
us, we will not know in our lives. Why
the evils of the earth had to take his
life away we will also never know. But
someday, we will all be reunited
together and I will never have to say
good-bye to my beautiful, blonde
haired miracle boy again. We love and
miss you everyday Mighty Max. We are
so proud of you. The lessons we have
learned from you and continue to learn
will never be forgotten. Each time we
look to the sky we know you are
shining down upon our family, smiling,
laughing and living.
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