Wednesday, January 4, 2012

Gavin's Birth Announcement and Updates from 2007

I have always viewed this blog as a sort of journal for our family.  This site houses the random things as well as the important events that mark our lives.  I was searching through old files and discovered the original emails I distributed when Gavin was born.  I wanted to include them here on the blog as well . . . if nothing else, for my own records. 

 Announcing Gavin Jeffrey Peterson


  



  
Hi everyone! I am finally able to give you an update
on our new baby. Gavin was born on March 1st in the
Heber Hospital at roughly 2:15pm. As soon as he was
born, the doctor discovered that Gavin has
spina
bifida
. He was immediately Life Flighted to Primary
Children's and underwent major surgery to repair his
spine on Friday. 

Spinda bifida is a defect of the spinal column that
occurs in the first 28 days of pregnancy, when the
spine does not close properly. The bones do not come
together and there is no skin covering the open part
of the sinal cord. Gavin has the worst kind of spina
bifida, called myelomeningocele. In this case, the
bones and nerves portrude and are completely exposed.
We were lucky that his defect was low on his back and
will likely only affect his hips down.
The doctors were pleased with the surgery but are also
coaching us that Gavin will likely not have the use of
his legs. He has a strong set of lungs and tremendous
upper body strength which will be very helpful in the
coming years. Other than the physical nature of his
defect, he has strong vitals and has never had
assistance breathing, etc.
My doctor discharged me as early as possible on Friday
morning so that I could spend the week at Primary's
with Gavin. We were finally able to come home this week.

Gavin's condition was not picked up on either of the
ultrasounds that were conducted and all signs pointed
to a completely normal and healthy baby. As I'm sure
you can imagine, we were completely shocked by the
news and needed a few days before we were able to
communicate with family and friends.
The next hurdle is monitoring him closely to see if
hydrocephalus develops, where excessive spinal fluid
builds pressure in the brain. Roughly 80% of spina
bifida patients have hydrocephalus and have a shunt
(or tube) surgically inserted into the brain with a
tube that passes under the skin all the way into the
abdomen. Gavin's neurosurgeon was hopeful that Gavin
may avoid this next surgery. But, we may not know for
weeks, or possibly months. In fact, most aspects of
Gavin's development are a "wait and see."
Our little Autumn is thrilled to have her baby brother
home and is even more excited when given the chance to feed him.

Jeff and I both are doing much better now and love our
little baby like no other. His special little legs
don't look unfamiliar to us at all. We are trying to
learn as much as possible and have millions of
questions - as we're sure you do, too.
Feel free to call or email. Please understand if it
takes a few days to respond. 
We have been overwhelmed in a good way by the support
and response we have received and appreciate every
thought and prayer on behalf of our family.
Jeff, Karen, Autumn and Gavin Peterson

 
Update on Gavin 3-23-07

We have had several appointments this week and last
week at Primary's as they watched Gavin closely as the
pressure and fluid seemed to build. On Wednesday, the
neurosurgeons still said that Gavin was borderline in
need of the shunt - and they were still trying to hold
out hope that he might avoid the surgery. Last night
at about 11:30pm, I noticed clear spinal fluid leaking
from the incision in his back. This was a dangerous
warning sign that the doctors warned us about. We
rushed him in to Primary's and they are placing the
shunt in his head today.
Hydrocephalus is an abnormal accumulation of spinal
fluid that builds within the ventricles of the brain.
Because Gavin's body was accustomed to draining the
fluid out of the opening in his back prior to his
first surgery, we had to watch him closely to see if
his body could regulate the spinal fluid on its own
after his spine was closed. Normally our bodies
produce spinal fluid on a continuous basis and it is
absorbed back into the blood stream. With spina
bifida kids, this balance is interrupted.
A shunt is a flexible tube that is placed in the
brain. Gavin will have an incision in his scalp,
behind his ear and in his abdomen. The tube will be
tunneled under his skin between these incisions and
will end in his abdomen, where the fluid can be
reabsorbed into the bloodstream.
I think we all knew of the likelihood that Gavin would
require this surgery . . . unfortunately, as a mother
of a three week old infant that is having a second
major surgery . . . I am clearly devastated and not
handling it as well as I had hoped. Nevertheless, we
have developed an even stronger love for Gavin than we
thought possible and will do anything we can to
protect and care for him.
Again, thank you so much for keeping us in your
thoughts and prayers.
Please accept our apologies for not calling everyone
back or responding to emails . . . but, please know
that we sincerely appreciate everyone's support.
Again, I have attached a few pictures that our friend
took of the family at our house this week. Thank you
again, Sherry!
Jeff, Karen, Autumn and Gavin


Update on Gavin 4-17-07

Gavin is already six weeks old. He's growing so fast
and weighs over 11 pounds. Since our last update,
we've had one more stay in the hospital. Within 24
hours of coming home after the shunt surgery, we saw
fluid once again leaking from Gavin's back incision
and were back in the hospital for three more days.
They had what would have been his 3rd surgery
scheduled two days in a row and ultimately decided to
delay and hope for the best. So far, we've set a
record for time at home and have definitely enjoyed it!

Our last visit to the Spina Bifida Clinic at Primary's
was this past Friday. His incisions are all healing
well and they are pleased with the progress his legs
have made. They are relaxing more and more and we can
even see slight bend in his knees the "right way" from
time to time (they still hyperextend). We have weekly
visits from the occupational and physical therapists
in the Early Intervention program and have been
coached to "get creative" in the way we stretch his
legs. They have us on the calendar to start casting
his knees and feet on May 4th to hopefully loosen the
joints and see what progress can be made before the
inevitable surgeries begin.

Gavin will also have a comprehensive bladder and
kidney exam in the next few weeks to determine
pressure, the possibility of reflux, and kidney
function among other things. Almost all children with
an open spine in the lumber/sacral area have bladder
and bowel issues - and many are ultimately on some
form of a catheterization program.
Gavin is truly one of the sweetest and calmest babies
I have ever seen. He is very mellow and literally
will go days without crying (of course - even this
stroke of good luck makes me a bit anxious). However,
I'm taking full advantage of his temperament,
especially since Autumn needs (and demands) the attention.

We are still working on arrangements for my return to
work. We don't want Gavin to attend day care and are
trying hard to work out our schedules so that one of
us is always home with him. Wish us luck!
Again - I'm very sorry that I have not been returning
individual emails. Somehow the time slips away too
quickly . . . But, we absolutely love getting your
emails and hope that you will continue to write, call
and visit. Please let us know what questions you have
. . . we are constantly learning too!
We wish you all the best!
Love,
The Peterson Family
Jeff, Karen, Autumn and Gavin

1 comment:

  1. I remember getting these emails and my heart aching for you and your family. I love to see how far Gavin has come and what an awesome little kid he is. Also, love how sweet and little Autumn is in those pics. Her face is like a little cherub, so stinking cute.

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