Cade 3 months old
Cade & Marissa
Early on the morning of January 25, 1995 I went into labor with my third
child. It was very cold and snow was falling outside. My mother was called to
come pick up my daughters, Rachel 12 and Marissa who was five days short of
her first birthday, so she could care for them while my husband Doug and I got
settled at the hospital. I insisted on carrying little Marissa to the car and
strapping her into her carseat. I felt she was so tiny to be a big sister and
wanted to hold her as my "little baby" once more before leaving for the
hospital. At the hospital we got settled and I was relieved when it was
confirmed I was indeed in labor. The pains were not nearly as intense as the
ones I'd had with the girls but felt more like some sort of short circuit than
full fledged labor pains. My doctor came in, checked me over saying I was
dilating nicely and she had to go do a 30 minute procedure with another
patient. In the meantime the anesthesiologist would start my epidural. She
said she'd be back soon to pop my water, we'd start pushing and have us a
baby. I was astounded that it was going so smoothly! Imagine....... my pains
were barely getting uncomfortable and I was already getting my epidural! With
Rachel I had an emergency c-section after 22 hours of labor and no dilation.
Marissa had been V-Bac and the pains had come so fast and strong I was
terrified. Now the anesthesiologist, Henry, came and began to prepare me as a
nurse quietly checked the monitors. She left the room and was back in seconds
with another doctor. I was checked quickly to see where I was in dilation and
asked to push once. The doctor told us "We have to do a c-section NOW!" and we
were flying into the O.R. I felt a stick in my arm and saw that the nurse
was giving me a shot. I wondered why since meds usually drip in through the
I.V. We were quickly told that the baby's heartbeat had stopped but I had
been given epinephrine which had brought it back. The staff was very
professional but there was no mistaking from their demeanor that we were in a
dire emergency. My doctor had been paged to come to the O.R. immediately but
since the other doctor was closer she took over. Everything was happening so
quickly that Doug and I were in shock. The doctors and nurses were working
frantically to get the baby delivered and suddenly I began gasping
uncontrollably and my body was slamming around on the operating table. I
thought I was having convulsions but had no way to speak to anyone. I was tied
down and Henry was holding a mask over my face. Doug looked panic-stricken and
I really thought he was going to pass out. He later told me that the baby had
gotten wedged under my ribs and one doctor was shoving on my chest while the
other pulled desperately to free the baby. He thought I had died and the
doctor was doing CPR on my heart to revive me. The staff was working so
frantically to save the baby no one had time for explanations. I heard the
doctor say to Henry, "How fast can we get Mom out under a general?" My heart
broke then, fearing that the baby was lost. I knew they always want the mother
alert for a birth. I had had so many drugs pumped into my system in such a
short time that Henry did not want to risk using more so I stayed awake.
Finally the baby was free and we heard a small, weak cry. Relieved but still
concerned we asked the sex of the child and there was silence. Then my doctor
told my husband there seemed to be some sort of hernia on the abdomen and she
wasn't completely sure of the sex. It was quickly noted that the child was a
little boy. Doug was allowed to hold him by my head for a brief instant and I
looked at the most beautiful infant I had ever seen. Jameson Cade had been
born and weighed 7lbs 2 oz. He had had a brutal birth but his struggles were
just beginning. I could not touch him but kissed his little head and
whispered, "I love you Cade". Cade was taken to the nursery and the
pediatrician called in to determine what was wrong with his abdomen and I was
taken to the recovery room. I was so worried about the baby and layed with
tears in my ears until the pediatrician came to tell me the condition was
known as Bladder Exstrophy. It was a very serious condition but surgically
correctable he said and knowing this was a comfort. I was taken back to the
maternity ward and we paused at the nursery so I could see my son. My parents
were there with my brothers and their hearts were in their faces though they
tried to be cheerful and positive. I was settled into the same room I'd had
with Marissa nearly a year earlier and the room soon filled with Doug, my
family and several doctors. A team of doctors and nurses had come in a
specially equipped ambulance from a children's hospital 50 miles away and they
were preparing Cade to be transported there for his care. They brought him to
my room before leaving and I looked at this precious angel in the incubator
and begged them to let me hold him. He was in a special, sterile bag from the
waist down with tubes in his tiny veins and I couldn't even touch him. He was
taken away after just a brief visit. Nothing I had ever known could prepare me
for the pain of seeing him taken away. If my heart had been ripped out and
taken away it could not have hurt as much. It was breaking everyone's heart
because we didn't know about this condition and if our baby would survive. I
fell against Doug's chest and cried harder than I ever knew a person could
cry. He had to leave soon after so he could go to Cade. He was so torn about
leaving but of course our baby needed his family with him so Doug left and we
waited all day to hear from the children's hospital about how Cade would be
treated. Doug's family rushed to join him at Kosair Children's Hospital and
finally that night they met with the man who would become our hero, Dr.
Casale. The condition was extremely rare, occuring in only 1/30,000 births and
we were very fortunate to have a highly skilled surgeon so near us. Cade
underwent a 6 hour surgery the next day and was in traction for three weeks in
the NICU. When he was three days old I was finally released and able to go see
him. It was such a shock to not be able to pick him up. He had to remain in
traction and could not be held. A nurse was taking care of him and although I
knew she was wonderful and he needed her special care, it hurt because I'd
always known exactly what to do and how to care for my babies but Cade's needs
far outweighed my ablilties. We stayed at the Ronald McDonald House that
weekend and visited Cade as often as we were allowed. I have to give high
praise to the staff at the Ronald McDonald House in Louisville Kentucky. The
house is beautiful, the staff is warm and they do everything in their power to
help families in crisis. The atmosphere there is very spiritual. Church deacon
and street gang member come together peacefully, parents lend other parents
helping hands when they are in despair themselves. All that matters is
everyone has a beloved child in the hospital and each family touches another
when all come together for those little angels. I have never seen anything
like it. They call themselves "The House that Love Built" and it is completely
true. Doug's mother was an angel herself and she took three weeks off work to
stay in Louisville with Cade. She knew my c-section was a doozy and the girls
needed me. The only way I could ever take the time to go home was knowing Cade
was doing well and his Mamaw would be by him every possible moment, giving him
him the best love and care in the world. Through the week Doug and I went to
the hospital every night we could and called so often we were on a very
friendly basis with the hospital operator. Cade's doctor praised him, saying
he was doing remarkably well. On the weekends we went and stayed at the RMH.
Cade was in a room mostly filled with preemies and he was so much bigger he
looked kind of funny. He still had the newborn look and was bigger but they
looked older and were much smaller. He was so good and never fussed at all.
Just layed there, strung up in in traction like a little ham, swinging his
little bottom, chewing his fist and looking around with his beautiful, bright,
blue eyes. Finally the day came when he was to be taken out of traction. If
there had been an accelerator on the passenger side of the car we'd have done
100 mph I was so eager to get to the hospital. While we were scrubbing at the
sinks my favorite nurse, Susan, came out into the hall with Cade. They had
just taken him down and he was squalling his lungs out. He had swollen after
the surgery and some skin had come off when the bandages were removed. She put
him in my arms and he instantly stopped crying and stared at me. It felt
wonderful to hold him at last. We had a staring contest for most of the night.
At home the girls adored their little brother. Rachel was such a help with
both babies. Marissa had just had her first birthday but was such a little
woman. She got her dolls and bottles and would imitate everything I did with
Cade. The funniest thing was when I'd burp him. She'd put her doll on her
shoulder, pat it's back and let out a big, fake burp whenever Cade finally let
go. I think she deserves credit for a lot of Cade's success at the baby
milestones. He was her favorite thing in the world and she was his. They were
adorable together and she was a great leader for him, teaching him so much. He
had two more surgeries at one year and all went well. He was so happy and
healthy and we were delighted that he was doing so well. A few weeks after his
2nd birthday he went in for a really big surgery. Doctor Casale had moved to
another hospital, Riley Children's in Indianapolis, so we were taking Cade
there for treatment. He had an 11+ hour surgery on 2/13/97. He had severe
reflux and a Uretal Reimplantation was done. Also Bladder Augmentation and
Bladder Neck Narrowing. And because his bladder was so weak and the doctor
feared his bladder was not emptying completely a relatively new procedure
called "Appendicovesicostomy" or "Mitrofanoff" was done. His appendix was
taken and a connection formed from the bladder to the navel. It is completely
continient and very cosmetic. It is undetectable to anyone who does not know
of it. Of course for many weeks after this surgery he was full of tubes which
was miserable for a two year old who had felt fine till this surgery. It was
necessary to prevent problems so it was done when he was feeling fine. He was
in the hospital for nine days wanting out the whole time. Thank God they had a
VCR and Barney tapes. This kept him fairly happy while he was there. We got
to go home and they healing process was something we'll never forget. Finally
he was free of tubes and we were catherizing him regularly through the
Mitrofanoff. Still he never got back to the robust child he'd been and all
through the summer and fall he had test after test. Finally in November of
1997 we were broadsided by the news that he had sustained kidney damage. His
right kidney 75% damaged and the left 25%. Heartbreaking considering his
kidneys were healthy at birth. The reflux had been so severe and he'd had a
very nasty bacteria called Pseudomonas in his urine, combined they had caused
the damage. This was much harder for us to take than Bladder Exstrophy itself,
Doug and I have grieved heavily since this news and worry much more about
Cade's health now. I'd always comforted myself with the knowledge that
Bladder Exstrophy may be life altering but it isn't life threatening. Knowing
Cade has this degree of damage terrifies me. He has done well but has had
frequent UTI's. In March he woke up one day in horrible pain. We were rushed
to UK Children's Hospital by ambulance (much nearer than Riley) and he was
admitted for a severe kidney infection. He was there for four days on IV's
then came home for IV infusion here. It takes quite awhile for the body to
heal after such an infection before the baseline can be determined so he has
another round of tests and scans scheduled for this summer to determine the
state of his kidneys now. I just pray there isn't more permanent damage. In
the meantime he is on an upswing. Doing well, active, gaining weight
absolutely gorgeous and those eyes are as bright and blue as ever. I have
never in my life met anyone as headstrong and stubborn as this child but I am
glad because those are signs of strength and he will need it. Just to look at
him is like looking at sunshine. He is bright and happy, with silky blonde
hair and a sunny smile you just have to fall in love with. He has the cutest
belly laugh and he and Marissa are the best of buddies, getting into
everything. Luckily, other than his kidneys and Bladder Exstrophy he is a
completely normal little boy and does everything any other child does. There
were never any more problems with his heart. It was determined that his due
date was miscalculated and he was born three weeks overdue, although five days
short of his due date. This is so far over due that it is very dangerous for a
baby and we are happy he got through it all so well and continues to amaze us
with his strength and courage.
Cade & his sister Marissa
to Exstrophy Home Page