HOW SAVANNAH CAME ABOUT
My husband and I never discussed having another child we were content
raising our two sons. I was looking forward to going back to college
to finish my degree in nursing. We live in Nebraska and in Oct. of 1997
we were hit with one of the worst snow storms in history. It damaged the
trees since the leaves were still present at the time. The city looked
as if it had been hit by a war zone. We were one of the fortunate we were
without electricity for 2 days and without cable for the next week it took
about another 2 weeks to get other families power up and light the rest
of the city. In the next few weeks I was sick with a bad sinus infection
and had flu like symptoms . I never thought I could be pregnant. I just
wasn't feeling better finally in December I went to the doctor and
was told, "Congratulations your having one of the storm babies." My husband
was ecstatic and for me it took a little getting use to the idea. Soon
I started making plans for my summer child to arrive.
MY PREGNANCY
I was very blessed to have a great doctor. He was at my side all the
way. I was a little nervous since my last pregnancy had some complications.
I had to have a c-section due to being induced and failure to progress.
I had preeclampcia which is high blood pressure brought on by the pregnancy.
My doctor reassured me that they would be keeping close tabs on me. I had
an ultrasound at 13 weeks and then another one to check growth at 26 weeks.
Both ultrasounds reveled no problems, I started to have problems at 28
weeks when I gained alot of weight fast 16 lb. in one week. My blood pressure
was going up again as it had in the previous pregnancy. I slowed down and
started a modified bed rest program. I spent most of my time in bed
on my left side. Finally at 38 weeks gestation the doctor said lets go
bring this little one into the world.
THE BIRTH
On Wednesday July 15th 1998 at 12:22 p.m. Savannah Leigh was born by
caesarian section. She weighed 5 lb. 14 1/2 oz. she was 18 inches long.
She was born with apgars of 9 and 9. She came to into the world screaming
like "Now you have really made me mad," it was a very happy time for us.
We finally got a little girl to finish our family. My husband at my side
and my best friend Jen the offical picture taker present also. I had included
her in this special day because through nursing school she had never seen
a baby being born by caesarian.
It is not mandatory that a pediatrician be present at the birth.
The following day I was determined to get up and moving so I walked to
the new born nursery to view the other babies. I saw my pediatricians partner
examining Savannah so I entered the nursery to say hello. The doctor told
me she was a little concerned about the shape of Savannah's head
and pointed out that there was a ridge at the back of her skull.
She said it could be due to molding since Savannah was head down. She also
explained that Savannah's head measurement didn't match her gestational
age. Her head circumference was 31 cm. and she should of been around
35 cm. She asked to do an ultrasound of the head just to play it
safe.
PHONE CALL CHANGES OUR LIVES FOREVER
I didn't realize that the news I was about to receive would change our
lives forever. Lost dreams of the child I had hoped she would become. On
July 16th her pediatrician phoned me at the hospital and told me
he had her test results. he stated she was either microcephalic (
which means small head) with severe brain calcification or hydrocephalic
(which is water on the brain) . After the neurologist examined her he concluded
she was microcephalic with severe brain calcification. I was so deviated
by the news and angry at the doctor for telling me over the phone. I felt
I at least deserved 5 minutes of his time to tell me in a caring way such
disturbing news. Telling my husband and my parents were one of the
hardest things I ever had to do. I was fighting the baby blues and a deep
depression was setting in. We finally went home to follow up with the neurologist
the following week. He suspected that I had contracted CMV or toxoplasmosis
both have been negative by Torch test results. Our neurologist still believes
it was infact CMV due to the calcification.
THE ADJUSTMENT PERIOD
In the first few weeks I had a very difficult time bonding with the
baby. I think back on it now I think some of it was in self pity and the
other part was being afraid of losing her. This was a very dark time for
me. She was a very colicy baby who would cry for 3 to 4 hours at a time.
I felt very isolated and felt somehow I was being punished by god. I soon
saw my family suffering by my actions as I grieved for her. My sister had
done some research on the internet and brought me a web address of a on
line support group for microcephalic children. We did not have a computer
at the time and I would go to my friends house to read the letters and
have some contact with other parents going through this. This was very
comforting to me and soon I started to feel better about the situation.
A friend of ours gave us a computer And I was finally able to have contact
everyday.
GETTING RESOURCES TO HELP HER
In the next few months there were alot of doctor visits with specialists.
Our first appointment with the neuro-opthamologist revealed she had large
scars on the retinas and her vision would be very limited. She started
to display increased tone in her upper extremities and despite my efforts
of working those arms the stiffness continued. I had decided with the doctors
recommendations to get her in the Early Intervention program. she has one
of the best home base teachers here . she also has occupational therapy
and physical therapy weekly through the public school system. She was meeting
her developmental mile stones and we were stimulating her in every direction.
We play with shiny toys and a flash light which she tracks with her eyes.
We called it her light therapy. Savannah continued to be quite colicy.
BACK TO THE HOSPITAL
On Nov. 13 1998 we followed up with the neurologist and her head had
gone from 35 cm to 41 cm . He was very concerned since the brain does not
grow that fast he ordered us to go for a cat scan immediately. The cat
scan showed massive Hydrocephalus
( fluid on the brain). She was immediately admitted to the hospital
and underwent ventricularperiteneal shunt placement. We spent the next
7 days at the hospital recuperating from major surgery. I took off from
work to stay night and day at the hospital to care for her. I'm glad my
job has been so understanding about Savannah's illness.
It has taken almost 2 months for her to bounce back from the surgery.
She had a viral infection shortly after coming home. I am very cautious
in who handles her and don't take her out in public in fear that her immune
system is compromised. Savannah has developed seizures and has had 5 that
we have witnessed. The antiseizure medication they use can slow down her
learning so we have decided to use an alternative method. We do know she
has a low threshold to seiziures when she has a tempature so we make sure
we treat the fever with Tylenol and should she go into a seizure
we have a medication called Diastat to give to decrease the seizure activity.
So far she hasn't had another one, which makes us count our blessings.
Update On Savannah January 2000
It has been 17 months since the creation of this web site. Many of you have asked how Savannah is today. Savannah had her first shunt placed in November 1998. She deterorated the following months. She had multiple seizures spiked unexplained temps and was increasing lethargic. She was started on phenobarbital for the seizures and needed to be fed by a nasogastic tube. In March of 1999 she underwent 3 major surgeries for bacterial menningitis and spent 21 days in the ICU..
We brought home this frail fragile gift from god. Uncertain of what the future had in store for us Savannah started to improve. She is still unable to sit or crawl but her head and trunk control are improving daily. Savannah is now drinking from the bottle again and we are working on weight issues.Savannah can smile, giggle, roll side to side, and has brought new meaning to my life and the people who she touches.
Here it is Savannah December 2000
We have made it through this year with only a few snags. Life seems to be getting alittle more normal around our house. Savannah had tubes put in her ears in March due to recurrent ear infections.Its been wonderful only 1 infection since the placement of the tubes. We struggled with Savannahs weight all year attempting to fatten her up. She drinks from the bottle so well, but her seizure activity and the pedeling she does with her legs causes her to burn calories rather quickly. We give her pedasure with microlipids added and she loves her table food but it just wasn't enough, my lil angel is only weighing 20 lbs despite my efforts. We have decided to have a gastrostomy tube placed to help feed her and get more calories in. She is doing well activating toys with switches loves turning on a fan that blows wind in her hair and makes pig sounds lol. The giggles it brings her are definately my reward.I want to say I like my computer more and more have met so many nice families who have a child like mine.It just seems comforting to know I am not alone and they seem like lost friends finally making our family complete. I have to say thru emails and chat programs I have been able to keep in contact with my friends. Donna, Becky, Dave, Saskia, Marie DeeDee thankyou for sharing your children and freindship with Savannah and I. Your support has been a godsend. Smiles~
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Update June 2004
Can you believe my little girl will be turning 6 on July 15th, 2004 its hard for us to believe she has grown so much over the past few years. Savannah has taken on her own little personality and lets you what she likes and doesnt like. Loud noises, sneezes, thunder, babies crying make her smile and giggle. To long in the same position and wet diapers make her unhappy. She loves to still be held and cuddled. We took her in April and cut her long hair off it has alot of natural curl and took over an hour to comb through so we cut 14 inches off and donated it to "LOCKS OF LOVE" an organization that makes wigs for children who have lost their hair from chemo therapy or alopecia. She was very happy with her new hair doo. Savannah is still G-Tube fed and still cannot sit up unassisted or walk. She Loves music, the outdoors and to smile and be read to. I cant imagine what life would have ever been like without her around :).
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WHERE WE ARE AT TODAY
Our life has been filled with struggles, but it has brought our family
closer and my marriage stronger. We live life one day at a time, not knowing
what the future holds for her. I would have to say that I have accepted
Savannah in the package she arrived in. It isn't the life we had planned
but we love her. Her warm smile and bright blue eyes could light anyone's
heart on fire. She is the light of my life and now life doesn't seem like
an uphill stuggle. All the time. She is less colicy and loves her brothers
giving her attention. My boys have adjusted well and do everything they
can to help. Through Savannah's illness I have started a quest to find
out more. I research new treatments and where medical technology is going.
We still have found no answer to why this occurred we just thank god for
her presence everyday.
I have recently designed a pin for parents and anyone who wants to
show there support of children with neurological disorders If anyone is
interested in one please email me and for a small donation ( proceeds go
for Savannah's medical bills not covered by insurance) I can send you one.
Someday I hope for the donations to go to neurological research.
One last thing I want to share with you is that we are these children's
avocates We need to take a stand and fight for our children We have so
much to learn by them. God has his reason for sending us his special children
They truly are the wind beneath our wings.
Smiles Savannah's mom
