October
05, 2006 - We are thrilled to find our that
we're pregnant with child #2!
June 6, 2006 - I
have a normal, uneventful pregnancy with 2
ultrasounds...all looks good.
June 26, 2006 -
Katherine Anne enters the world at 7lbs 10oz....all is
good...Apgar scores are 9. All the family meets Kate.
Doctor gives good report. Kate has hip dysphasia, but it
can be fixed with a soft cast.
June 27, 2006 - 6:00
a.m.: Nurse comes in to tell Krista that Kate's color is
bad, her oxygen levels are low and they can't get them
up. Kate is sent to Neonatal Intensive Care Unit (NICU)
at DuPont Hospital and gets an echocardiogram. They
discover a serious heart defect, start her on medicine
and intubate her. 10 a.m.: We learn that she is
missing her pulmonary artery. There are 3 tiny
collateral arteries that God miraculously gave her, but
those don't supply enough blood. Surgery is imminent.
1:00 p.m.: Kate is rushed by ambulance to St. Vincent
Hospital in Indianapolis. It's the worst moment so far
in my life as my daughter is whisked away. I am
amazingly discharged from the hospital less than 24
hours after giving birth and we head the 2 hours south
to Indy. 5:00 p.m. We meet with a cardiologist in
Indy...he explains her situation and tells us he needs
to do a heart catheterization in order to determine the
next steps. Her official diagnosis: Tetralogy of Fallot
with Pulmonary Atresia. The cardiologist is optimistic
and tells us after a couple surgeries, she will lead a
normal life.
June 27-July 12, 2006
- We spend the next 15 days in the NICU in Indy. The
heart catheterization shows that they would like her to
grow some more before pursuing surgery. She sticks
around a few more days until she consistently starts
gaining weight. I'm terrified to bring her home.
Mid July 2006 - We
find out that Kate's heart condition is due to a genetic
disorder. Kate has a deletion in her 22nd chromosome.
The disorder goes by several names: DiGeorge, VCFS or
just 22q. We are devastated. The hardest thing is that
so much is unknown. There are over 180 anomalies that go
along with 22q and we have no idea how many will affect
Kate. We spend countless hours on the internet...but we
still know nothing as we will only know as symptoms
develop. Right now...her heart is our major issue.
July-September 06, 2006
- Kate is home for the summer on no medicine, oxygen or
monitors. She develops REFLUX and it takes her a long
time (over an hour) to take a bottle as she tires so
easily, so eating is our biggest task. Our pediatrician,
Dr. Steigmeyer, keeps a close eye on her (weekly trips
to the doctor).
September 28, 2006 -
Kate has her 1st heart surgery in Indy at the age of 3
months. All goes well with the surgery and the surgeon
was able to unifocalize her 3 collateral arteries and
bring them together into a shunt. He connects the shunt
to her pulmonary arteries and keeps the VSD open in her
heart.
September 29-October 18, 2006
- Kate spends 3 weeks in the Intensive Care Unit at St.
Vincent's. She developed a lung infection and has a hard
time coming off the respirator...she failed after the
1st attempt a week after her surgery. They do a CT scan
to check for stroke...no stroke but they find her brain
is "abnormal." More devastation. The MRI shows that she
has Polymicrogyria and the right side of her brain is
not as developed as her left. We met with the
neurologist...and again, more unknowns. We will not know
what this means to Kate until symptoms arise. Her brain
may compensate and "learn" new ways of communicating
with itself. We are told she is prone to seizures and
most likely will have some sort of developmental
delay....but we won't know until...? This is frustrating
for us as we want answers now! After two weeks on the
vent, Kate comes off and breathes on her own. Now, we
have the issue of getting her to eat again.
October 18-28, 2006
- Once her heart was stable, we transferred her to Ft.
Wayne to Lutheran to deal with the eating issues. Andy
had to go back to work and we needed to be home with
Seth (our 2 year old). After a week of dealing with and
learning to feed Kate with a feeding tube through her
nose...I beg the doctors to take the tube out and let
Kate try and eat without a tube down her throat. After a
swallow study that came back normal, they pulled the
tube and Kate began eating! We spend another week and
half at Lutheran.
October 28, 2006 -
Kate finally comes home from her surgery...this time on
some medicine and with an oximeter for us to keep an eye
on her oxygen levels. Kate is basically pumping mixed
blood right now...the blood is never completely
oxygenated and her sats run in the 70% instead of
99-100.
October-January, 2006
- Kate, heart wise, is doing well. However, she is not
gaining weight. We up her formula to this nasty
thickened 30 calorie. With the combination of the fact
that she doesn't drink that much since it tires her so
easily and the fact that she refluxes a bunch of
it...she gains only a pound in 3 months. We pretty much
keep her at home so she doesn't catch a nasty virus. It
is a long winter with many sleepless nights trying to
get Kate to eat. Cabin fever sets in. She remains
remarkably healthy...except for a nasty respiratory
infection around Christmas.
January 2007 - Kate
begins physical and occupational therapy through 1st
Steps. Two therapists come to our house and work with
Kate and me. She is delayed for several reasons:
1. Her genetic disorder
2. Her heart condition
3. She spent 6 weeks of her short life in the hospital
flat on her back!
We work hard on getting her to utilize her left hand as
much as her right (this is probably due to the brain
issues).
February 2007 - We
meet with a surgeon to discuss putting in a Mic-Key
button (a feeding tube directly into her tummy)! We are
hesitant to go ahead with it because she had finally had
a decent weight gain the week before. We decide to wait
and see....Praise God Kate has continued to gain weight
and we dodged that bullet. No feeding tube!
March-June 2007 -
Kate begins to blossom! Feedings get much easier. She is
consistently gaining weight. She begins to sleep for
more than 3 hours at a time. Therapy sessions are
working and she learns to roll, sit and utilize both
hands. The weather gets better, flu season is over and
we can go outside! YEAH!
June 14, 2007 - Kate
has a heart catheterization in Indy, her arteries have
grown and her final repair surgery date is set for July
25.
June-July, 2007 - We
pack in as much summer as we can in 6 weeks. Kate turns
1 and loves her cake. We take a family vacation to Lake
Michigan and she loves the beach. We took many
walks...spent hours on the swing in the backyard and ate
lots of ice cream and popsicles.
July 25, 2007 - Kate
has her 2nd open heart surgery at the age of 13
months...her "final" repair. The surgeon puts in an RV
to PA conduit and closes the VSD. Two days later they
discover that there is a residual VSD. They do an
emergency heart catheterization and the cardiologist and
surgeon agree that she should be able to come off the
vent and it shouldn't cause a problem. Several days
later, Kate's attempt at extubation fails and they go
ahead and schedule another open heart surgery.
August 1, 2007 -
Kate has her 3rd open heart surgery in attempt to close
her residual VSD. She makes it through fine...but again
in a post-op echo they find yet another VSD.
However...Kate is able to come off the vent within a
couple days...spends 10 more days recovering and comes
home on August 18...on 8 prescription drugs! YUCK!
August 21, 2007 -
Kate is throwing up a ton the 3 days we have been home
and is not eating anything. We take her to our local
hospital where they decide to fly her by helicopter back
to Indianapolis. The minute the nurse takes her off my
lap in Indy...she arrests. She is without a heartbeat
for 20 minutes while the doctors attempt to get a
central line placed. The line finally gets placed...and
Kate responds to the epinephrine and her heart begins
pumping again. She quickly opens her eyes and looks
around which encourages us all that there is no brain
damage.
She spends another 25 days hospitalized as they continue
to adjust her meds. Kate has lots of issues with fluid
retention and is very dependent on her lasix. We are
told by a cardiologist that her heart function is not
improving and that her prognosis is not good. We once
again are devastated. Another cardiologist assures us
that her heart will recover...it just takes time and she
just needs to grow. We ask for a 2nd opinion and they
refer us to University of Michigan at Ann Arbor.
September 14, 2007 -
Kate once again comes home...on only 6 meds...but on
oxygen full-time.
September 18, 2007 -
We spend 3 days back in Indy after a 3am ambulance ride
because Kate is throwing up again. Some IV lasix and a
good "poo" and we're back home again. Kate loves being
outside and we go to the zoo, the apple orchard, take
lots of walks and swing in the backyard.
October 2, 2007 -
Again...Kate is throwing up constantly. This time....we
spend 5 days at Lutheran. The overall consensus is that
she has the flu...but she just has NO HEART RESERVE and
the basic flu pretty much takes it all out of her. She
needs IV fluids to stay hydrated.
October 7, 2007 - We
come home...only to have her develop a fever again
within 2 days. Panicked parents that we are...we're back
at Lutheran for 3 days until the fever is gone! After
her arrest in August...we learned that she is very
fragile and we don't take many risks with her
healthcare.
October 24, 2007 -
We go to University of Michigan at Ann Arbor for a
consult, echo and heart catheterization. The team there
is optimistic about condition...but definitely feel that
surgery is necessary to repair the VSD, repair her
leaking tricuspid valve and replace her leaking conduit.
Plus...the docs highly recommend she gets a g-tube to
both get her calories and strength prior to surgery and
allow for a quicker recovery. Surgery gets set for
November 27. We leave U. of M. after 3 nights encouraged
and optimistic about Kate's heart.
October 31, 2007 -
Kate goes trick-or-treating and LOVES it! She is the
cutest little monster you'll ever see! She loves chewing
on all the candy. It was a great night. But...Kate is
not eating well...and begins to lose substantial amount
of weight...weight she can't afford to lose.
November 9, 2007 -
We're back in Indy for her g-tube placement. In
addition, the surgeon does the Nissan Procedure to help
control her reflux. During surgery, the surgeon found
and repaired a hiatal hernia and dilated her constricted
esophagus. Poor thing...had so much stuff going on in
her tummy....no wonder she didn't want to eat. We spend
6 days in the hospital as she adjusts to her tube
feedings and we work up to her feeding goal.
November 19, 2007 -
We've been home about 6 days and Kate is retching more
and more. She isn't tolerating her tube feeds at goal
and gets sweaty and lethargic. A trip to the
pediatrician and he recommends a night in our local
hospital with a good couple doses of IV lasix to clear
out her lungs.
November 21, 2007 -
After spending 2 days at Lutheran...Kate doesn't get
much better. She continues to retch and has a few
episodes of turning blue. We make the decision to go
ahead and transfer her to U. of M. early so that the
heart docs there can really assess her and get her in
great condition for her surgery a week later. Kate and I
ride in the ambulance while daddy follows behind. We're
admitted to the floor of U. of M. at 9:00 p.m.
Kate decides she isn't ready for surgery and has several
breathing episodes, a fever spike and more retching that
concerns the docs. There is "talk" about pneumonia and
she spends 2 nights in ICU being watched...and surgery
gets postponed until December 11. We spend the next 3
weeks on the heart floor...just hanging out...adjusting
feeds...and trying our best to keep Kate happy! The only
way that is done by endless walks around and around the
floor.
December 11, 2007 -
We're so ready for surgery...Kate has been eating more
than ever...BUT...no room in the ICU so we get bumped!
December 13, 2007 -
Finally...the day is here and Kate goes back for surgery
to repair the VSD, repair the tricuspid valve and
replace the conduit. The surgery takes 5-6 hours and the
surgeon, Dr. Bove is optimistic afterwards. He is aware
of a small VSD he could not assess...but everything else
looks great. We see her and we think she looks great!
December 14, 2007 -
Once again...a post op echo shows that there are still
residual VSDs and the pressure in her heart is still way
too high.
December 17, 2007 -
Kate goes to the heart catheterization lab...and they
determine that nothing else can be done...and the
pressures still remain high. There is a chance she might
improve...but her pulmonary arteries are just too small
to manage all the blood flow from the heart. Their
goal...get her off the breathing tube.
January 1, 2008 -
Kate comes off the vent (after a failed attempt on
December 19). She continues to battle complications from
her weak heart and requires lots of medical care and
interventions over the next 2 weeks including chest
taps, chest tubes and extra IV medicine. Her heart
continues to grow in size and the leaks continue to
grow. The pressure is just too high and she is not able
to pump the fluid away from her heart and lungs.
January 14, 2008 -
After countless talks with many cardiac docs we are
assured that there is nothing more medically that can be
done for Kate's heart. After many talks with family, our
pastor, each other and God...we decide to not pursue any
further interventions. We place her in God's hands...and
do all that we (and the medical team) can to keep her
comfortable.
January 15, 2008 -
Kate drinks a bottle of milk, rolls over and peacefully
joins her heavenly father. No more tubes, no more
pokes...no more tests....no more shots...no more
medicine...no more pain!
January 19, 2008 -
Kate is laid to rest in Portland, Indiana. Her body
buried...her spirit living forever in eternity with her
Heavenly Father.
Kate blessed our lives for 568 wonderful days. We were
told we must be pretty special people for God to bless
us with Kate. We've learned...Kate has blessed us more
than we could ever have imagined. |
The Story of Kate's Kart
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