I’m five months behind in posting,
but I hope to catch up now that I am on leave with baby #2.
So this has been in the making for
over a year. I read about it. I dreamed about it. I stayed up countless nights worrying about
it. AND finally, on Tuesday, October 28th at 7:30am, Nic had her cranial vault
reduction surgery. I have talked about
it many times, but for those that need a slight refresher course here goes: Nic’s condition was found in utero on her
18-week sonogram. At the time, her
ventricles put her in the category of severe ventriculomegaly. By the time we saw a specialist at 21 weeks,
her ventricles had grown, changing her diagnosis to severe Hydrocephalus. We watched her condition grow asymmetrically
until she was born at 37 weeks. At 32
weeks, she consulted with a NSG at Children’s Mercy who found an interhemispheric
cyst. This would become Nic’s primary
diagnosis as it formed first and cause all of Nic’s other conditions (PMG, CVI,
Chiari Malformation, etc.). All of
these conditions working together created one, very obvious problem, Nic’s head
was growing to accommodate all of the fluid.
When Nic was born, she had a head circumference of 58 cm; she had severe
Macrocephaly (http://www.healthofchildren.com/M/Macrocephaly.html).
Having an
adult-sized on an infant body causes a number of issues. Nursing, feeding, positioning and handling
all become difficult. For Nic, we found
that after working with a private and federally funded PT twice a week for a
year, she still did not have head control.
She could not left her head at tummy time, could not hold her head up
independently in supported seating, could not roll over, etc. Her head acted as an anchor. She could at 8 months turn her head 180
degrees when in a supine position; this is it.
CVR is a
surgery in which a team of surgeons cut down skull plates and put them back
together, thus reducing the skull cavity size.
While this surgery was “elective”, it was decided that Nic faced a quality
of life issue. We didn’t know if she had
the neurological ability to hold up her head.
As her mother, I feel she does.
She wants to move; she tries to move.
She just couldn’t move! And how
could she was a tiny body and a head my size?!!! We knew without the surgery, she probably
wouldn’t be able to gain head control until around five, when her body grew
into a size more proportional with her head.
As a special educator, I knew what that would mean for Nicolette in
terms of her developmental delay. So
much development in infancy is linked to gross motor development. What kind of parents would we be if we
allowed her to have such a huge delay? If we could do something (like reducing her
head size in CM and weight) and elect not to?
Now I’m going to be honest here. No
one births a child and hopes for a disability.
No one hopes to see their precious child start the world “behind” or
with more-obvious obstacles then his or her peers. In my opinion, the world is cruel to
conditions it collectively does not understand, and I found it devastating to
learn that MY child would have to work harder and longer to try to be close to
“typical”. Now, there is a flipside to
being a parent of a child with special needs that Erma Bombeck illustrates
nicely in her poem “The special Mother” (http://www.our-kids.org/archives/Special_mother.html),
but that’s a different story learned later as your child grows. As a parent, you search for how to cope with
loss, that deviation from dream to reality.
For me, it was to be as educated as possible, and to use that education
to give Nic EVERY opportunity to “close the gap”, every opportunity for Nic to
thrive. I have read every article I can
find on each of Nic’s conditions, I have consulted with “the best” provider(s)
suited for Nic’s needs (even skyping a vision specialist in Europe at 3 am to
accommodate a 7-hour time difference), I have joined countless support groups,
and I have harassed every specialist that will give me the time of day. I’m not the most educated Hydro parent, but I
guarantee I knew them. Why does this
matter? Because in doing these things, I
have found peace. These resources led me
to Duke for Nic’s cord blood infusion, pointed me in the right directions for
services to consider (honestly, I would have dropped the ball on vision
services if a very dear hydro parent hadn’t said something), and prepared me
when Nic was very young for the need (YES THE NEED) for CVR. Nic could have died during the procedure;
it’s invasive and bloody but I would have still had immense peace knowing that
it was something she needed in order to thrive.
Nic’s CVR surgery took 8.5 hours
and required two blood transfusions. I
prepared to be at the hospital for 10-14 days given Nic’s history of needing a
little more time to recover post op and her history of having
incubation/excavation issues. Amazingly,
Nic sailed through recovery. We came up
Monday for her pre-operative appointment, had surgery Monday (starting at
7:30am), stayed in the PICU (for excavation issues as expected) for three days,
and went to the neurosurgery floor for 3 days.
We went home Saturday morning.
 |
| Goodbye Back Part of my Skull! |
Now, three months post-op, Nic
still cannot hold up her head, but she still has a 3-year-old head on an
18-month body. She can hold her head up
independently when supported in a seated position. She is looking side-to-said AND up-and-down
when in a seated and supine position.
She is rolling from side to back.
She is moving her head, arms and legs during tummy time, though she
hasn’t quite figured out how to coordinate this movements to roll from prone to
supine (tummy to back). She tolerates
being held upright for much longer periods of time and more often during the
head.
 |
| Goodbye Neck Pillow! |
More progress to follow in her 18-month post!
