Our sweet little
angel came into our lives February 9, 2004 and made
his entrance into this world a slow one. After almost
4 and 1/2 hours of active pushing he finally arrived
and weighted
6 pounds 9 ounces. He was beautiful and looked so
healthy on the outside, but because of the long labor
he would experience damaging effects to his brain.
Our first sign of this came 6 hours after his birth
when he started having seizures and briefly stopped
breathing. He was immediately taken to the NICU there
at Overlake Hospital. After many tests and ultrasounds
they discovered he had a bleed in his ventricles and
a possible stroke. They diagnosed this as an Intraventricular
Hemorrhage ( IVH) grade III and IV bleed. This would
be the cause of his Communicating Hydrocephalus and
would mean the placement of a shunt was necessary.
He was transferred to Seattle Children's Hospital
and Regional Medical Center, where little did we know
at the time would become our second home on and off
throughout his first and half year of life. Here we
would meet Dr. Jeffrey Ojemann the neurosurgeon that
would save Noah's life over and over and give us comfort
through the many frightening and difficult times ahead.
On March 3rd of 2004 Noah received his first VP shunt
at three and half weeks of age after his head circumference
jumped from 35.5cm to 39cm within two days. This shunt
caused many problems and at 7 months he would receive
his second shunt, this being a programmable now.
However, it was only the beginning to 15 more shunt
revisions, 2 serious shunt infections requiring a
total of 11 weeks on 4 different intravenous antibiotics,
the diagnoses of slit ventricle syndrome, the placement
of a second shunt this one being an LP shunt (lumbar
peritoneal), the diagnoses of an auto immune deficiency
called Auto immune Nuetropenia, and then the possibility
that his brain did not have enough room to grow because
of no change in head circumference. Noah ended up
undergoing a Calvarial Expansion (cranial expansion)
on April 28th, 2005. The procedure involved having
almost all of his skull taken off and spacers put
in between the skull bones to increase the overall
size of his head. Giving his brain room to grow.
It is almost inevitable that he will
have another shunt malfunction sooner then later because
of his slit ventricle problem. Amazingly enough through
all the difficulties of this last year, Noah has overcome
these hurtles and as long as his shunts are working
properly and his white blood cell count is maintained
at good levels with weekly injections of a drug called
G-CSF he should do well. Despite all of his medical
problems he is the happiest and sweetest baby. He
still acts like a normal baby but requires a little
more help with the every day baby things that most
parents of healthy children take for granted. For
instance his ability to eat by mouth was lost after
so many surgeries and he has had to get his nourishment
through a feeding tube that goes directly into his
stomach(G Tube). His development for a 26 month old
is behind, but he receives physical and speech therapy
on a weekly basis and seems to be making progress.
He is an incredibly strong and amazing child and has
completely changed my outlook on life. Everyday he
is feeling good and doing well we thank God and never
take these wonderful times for granted. He was an
absolute gift from God and has blessed and touched
our lives in so many ways and continues to daily.
The future will more then likely bring more surgeries
and hospitalizations and knowing that his current
shunts will more then likely fail is very disheartening
at times. But when you look into the eyes of this
little boy and see his bright, smiling face those
worries get pushed aside and you just focus on the
moment and not what the future could be.
For more information, go here: http://www.noahslifewithhydrocephalus.com
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