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Jessica Marie Jensen
Summer 2005

Spring 2003

September 2000
My Photo Page
My Pokemon Page
Back to my home page & please sign my guestbook

Jessica's story:

When Jessica was 2 weeks old she was diagnosed with multiple
heart defects. Some of these are: pulmonary artesia, VSD,
pulmonary stenosis and pulmonary branch stenosis.
click here to learn more about these heart defects
She was in congestive heart failure and was
hospitalized. Jessica spent much of her life in and out of the
hospital. Jessica was struggling to gain weight and every little cold or
illness would send her into the hospital. She was very "blue" and would
cough and choke a lot. Jessica was diagnosed with GE Reflux and put on
medication for that. Finally the pediatric cardiologists felt that she
needed surgery when she was 5 months old, eventhough she only weighted
10lbs. Jessica suffered a stroke with her first heart surgery and her
right side was weak. The stroke was in the speech area of the brain and
by 18 months of age, it was obvious that she was having extreme
difficulty with speech and was trying desperately to communicate. Our
home-bound teacher recomended sign language. We worked with the
teacher and speech pathologist and only 6 months later Jessica
could sign over 80 words! Slowly the speech came....being
facilitated by the sign language. Jessica was also delayed in other
areas due to the stroke. She didn't sit up until she was about
a year old or walk until she was two. Her heart and body
were weak, but her spirit was not! She was determined!

At age 3 when Jessica's shunt was to be replaced...the shunt was
accidently cut and she hemorraged out and went 8 min. with out receiving
oxygen to her brain and suffered a 2nd, massive stroke and bled for days.
She also caught an infection in her blood and 4 days after surgery we
were called to the hospital early in the morning to spend her last hours
with her. She was bleeding, having seizures and with the infection surly
would die. God blessed us immensely and she stopped bleeding on her own
after losing 1/3 of her blood volume in only 4 hours. She was in a
medically induced coma for a couple of days in order to completely stop
the bleeding. 10 days after surgery she finally came off the ventilator.
To our dismay she was blind and her left side was paralized. We thought
to ourselves, what have we done! After several days of waiting, tests,
and many prayers, Jessica received her eyesight enough to be able to see
her mommy and daddy. She was finally calm and could take comfort in
them. She finally came home from the hospital a couple of weeks later a
very sick little girl who had to learn to sit up, stand, walk and talk
all over again. But this awesome, strong-willed child showed everyone
what faith and hard work can do. She did learn to do all those things
again. I always said that her motto is: "I'm not going to let a little
thing like heart surgery and a stroke get me down!"

Jessica after 3rd heart surgery, 1993 ~ Dr. Donnerstein & Dr. Goldberg with Jessica.

Jessica was 5 years old when she needed her 3rd heart surgery. Jessica
recovered much better this time and 7 months later had surgery #4. The
surgeon came out of surgery very discouraged and told us that "there was
nothing more that they could do". Jessica's pulmonary arteries had not
been growing. Within a few months of that surgery Jessica was becoming
incredibly "blue" and was needing oxygen more and more. Finally a
cathetorization showed that the conduit which had been placed between her
right ventricle and pulmonary artery was allowing a lot of blood to flow
away from her lungs and into the heart. Surgery was needed again to
close off the conduit to give Jessica more time and improve her quality
of life. Jessica did much better this surgery, largely because the
incision was only a few inches long. Jessica came home 5 days after surgery.

It has been 5 years since the last surgery and Jessica has enjoyed
this time with her family. Jessica uses a motorized wheelchair in
order to conserve energy and is on continuous oxygen now. Jessica
has surprised many people by being much more energetic than expected.
Jessica has had to decrease the hours she spends at school so she won't
faigue too much. In fact, most days she stays at home and rests.
She is continually fighting congestive heart failure, but remains the
happiest young lady I know. Jessica enjoys drawing and writting stories.
Jessica recently got an art set and spends hours drawing and
being creative. She also loves to read short stories and play her gameboy.
Some of the games she has are Pokemon Silver, Yellow, Blue & Red.
I bet you can you guess that she likes Pokemon!


We are wearing or carrying christmas socks this year with the faith and
prayer that she can be healthy and strong to enjoy this christmas.
This tradition was started with a little girl, Becca, who was critically
ill following a heart surgery. A loving nurse gave Becca a pair of
christmas socks with the faith that she would survive to see many more
christmases. Becca did recover. Another year, a girl, Jessica Joy was
having serious complications following a heart surgery and Becca's mother
sent Jessica Joy's mother some christmas socks as a token of her prayers
and faith that she would recover. Jessica Joy also made a miraculous
recovery. This story was told to an online support group called pdheart.
Many people around the world have started wearing christmas socks in
support of this new tradition for our Jessica this year. We have been so
amazed by the love and support we have received from many people all over
the world. We invite you to either wear or carry chirstmas socks right
along with us. Jessica's mother's family will all be together for this
wonderful holiday and we pray that she can enjoy this christmas since she
is terminally ill and her health is deteriorating quickly.

UPDATE ~ Jan 2001

Jessica had a wonderful Christmas. Most of the family were
able to come, but the cousins that live in Utah were very sick
and not able to make it for Christmas. They are planning on
coming in the Spring for Easter. We are hoping that we will
all be well enough to enjoy their visit when they come.

Now that Christmas is over, our next goal is Spring. Several people
have started wearing "spring" socks for Jessica and many other people
have been wearing heart socks or valentine's socks in Jessica's honor.
Many states, including Arizona have signed proclamations making
Feb. 14, 2001 CHD Awareness Day (Congenital Heart Disease).
So many of us feel it appropriate to wear heart socks in honor of
Jessica as well as the millions of others affected by this birth defect...
which affects 1 in every 100 children born in the US.

Update ~ September 2001

Jessica is doing rather well considering what her prognosis is.
She is only going to school about twice a week, for half days,
but she is still enjoying her life. Jessica's youngest brother,
Austin, just started all day kindergarten and Jessica gets to
spend more time alone with mom while the brothers are all at school.
Jessica continues to play her gameboy and of course, is still
a huge Pokemon fan. Jessica also has liked the Power Rangers
since she was 4 years old. Jessica says she wants to be a
Power Ranger actor when she gets older. She will be the
"Purple Princess Power Ranger" in a wheelchair and on oxygen.
She has a vivid imagination! Jessica remains very positive
and hopeful. Jessica's Uncle Stuart Aunt Clarissa are expecting
their first baby next month. Jess can hardly contain her
excitement. Mom & Jessica went to a baby shower for Aunt Clarissa.
Jessica really had a great time. Jessica's Aunt Karen and
Uncle John are expecting their fourth boy in January. Jessica
just loves all the new baby cousins! She has a lot of good
things to look forward to, and hopefully with her great attitude
and all the hopes and prayers and all our family and friends
wearing christmas socks, she will be here for this coming christmas
as well as the arrival of all her new cousins.

Support Groups

We are involved in several great support groups, both locally and online.
One local support group is called Heartlight. This group is
for families that have children (all ages) who were born with chd
(congenital heart defects). This group has reached out
to us and we have made some very special friends there. If you
are interested in this group based in Tucson, AZ, please e-mail
Katie Desiato. She is the head of the group and very willing
to help out. You can also visit a couple of web pages regarding
this group click on:Heartlight and news article.

We are also involved in another local support group called Tu Nidito
for families with children with critical or terminal illensses.
These children have all types of illness including cancer and even
rare diseases. We have social workers help our families and
we help each other through difficult times as well as joyous ones.
Click here for more information on Tu Nidito

There is a bike race that is here called "El Tour de Tucson"
on Nov. 17. All the money raised benefits "Tu Nidito". An
employee at Jessica's school, Carlos Leon, is going to race in
Jessica's name. His goal is to raise $500 for "Tu Nidito" and he
will be riding 111 miles! That's right! One hundred & eleven miles!

A dear friend of ours, Cathy Schweinberg, made this quiltblock
in honor of Jessica. Cathy volunteers for
The Congenital Heart Defect Awareness Quilt Project.
Jessica's block in on quilt #18.
To go to the CHD Quilt site click here

The online support group that started the christmas socks tradition
for Jessica is called PDHeart. This group is world wide and
also has many resources to help families with chd. They are
in partnership with TCHIN (The Congenital Heart Information Network)
which is Created and maintained by Mona Barmash. If your life
has been affected by chd and want to join one of the e-mail support
groups, including pdheart, Click Here. If you would
like more information about TCHIN, click on the image below.

Hearts of Hope United was founded by Nora Wyenberg and is a smaller
group of families dealing with daily life with chd. We laugh,
cry, talk about serious issues as well as fun, everyday happenings.
We not only share the hardships, but also the joys of having a
Special CHD Kid. To find out more about it, click below:


Jessica has taught many people many things. As her mother, I have
learned the true meaning of unconditional love. Jessica taught me to
never give up and that God is truly in charge. Have faith in HIM and you
can see miracles. I want to dedicate the song "BECAUSE YOU LOVED ME"
sung by Celine Dion. Jessica may have needed my strength when she was
weak, my voice when she couldn't speek, me to be her eyes when she
couldn't see, but I'm everything I am because she loved me.

Jessica drew this picture of herself as an angel.

Copyright (c) 2000- Jessica