Alex's Story:

Still in the delivery room, we were holding John, Jr. while
Alex was being cleaned. We were so happy. But, it was taking
an awful long time for them to bring Alex to us.

Then, the neonatologist introduced himself and said that Alex
was having some problems clearing fluid from his lungs and
he was going to take him for tests. He assured us there was
nothing to worry about and he would meet us back in the
birthing room with Alex. We were taken back to the birthing
room were we had checked in that morning, where most of our
family was waiting for us, including our pastor.

We were oooing and aaaing over John, Jr. and explaining
Alex was having some minor problems and would be here soon.
Boy, were we ever wrong. We were told that Alex was still having
problems clearing the fluid, so they were doing more tests.
By this now, it was time for the nursery to take John, Jr. so he
could be weighed, measured, etc. and I was to be taken to the
maternity ward. By now we were very concerned about Alex.

Soon the doctor came back to talk with us, he informed us of
several of the problems Alex was facing. One of the largest was
an imperferate anus (no hole). From what they could see,
they were not sure if it was not formed completely or if there
were more extensive problems. Regardless, they would have to
do a colostomy operation, so there would be a way for waste
to come out. At 2 hours old, we consented to the operation for
Alex. We were horrified and terrified. I wanted to see my baby.
I only saw him for a split second in the delivery room and have
not been able to hold him yet. The nurses explained that I just
had surgery and could not go. We then informed the nurses that
I was going one way or another. Within minutes, the doctors
and nurses arranged a wheel chair for me and wheeled me down
to see our son. It was also arranged for our family to come
with us.

We waited in the hallway on the way to the operating room for
the doctors and nurses to bring Alex. We only got to see him
for a minute and we could not touch him or hold him, but we
were able to tell him that we loved him.

Upon returning to our room, we asked the nurse to bring John, Jr.
It was taking a very long time, so John went to see what was
taking so long. There was no problem. John, Jr. was sleeping
when out of no where he beganto cry a very agonizing cry.
We later found out that that was the precise time Alex's surgery
started. John, Jr. was brought to us shortly after and we held
him tight and cried. Then again at 6:45PM, John, Jr. squalled
his agonizing cry, the operation was over. Alex had made it
through his first of many operations.

Shortly after the operation, the doctors discussed with us
Alex's condition andtheir findings. They had found the following:
duodenal atresia, esophageal atresia,tracheal esophageal fistula,
imperferate anus, urethra atresia, and no functioningkidneys.
These are all classic characteristics of VATER Association.
VATER is an acronym each letter is representative of a body part
deformity a baby can be born with;
V=Vertebrae, A= Anus and sometimes rectum problem,
T= Trachea (wind pipe) problem, E= Esophagus
(tube from mouth to stomach) problem(s), R= Radius
(lower arm bone on thumb side) problem(s). Plus there are other
letters to be added R= renal (kidney) problem(s),
C = Cardiac (heart) problem(s),
L = Limb (arms, hands, legs, or feet) problem(s). S = Single
umbilical artery (umbilical cord had 2 blood vessels instead of 3).

We were given all the options by several doctors and decided
to give Alex every medical chance available. On March 11, 1998
he was transferred to a children's hospital 2 hours from home.
It was arranged for us to follow and meet him at the hospital.
The hospital in Richmond had made arrangements at the Ronald
McDonald House across the street from the children's hospital
for our stay.

Many doctors met us, to discuss Alex's condition and treatment.
Everyone put his or her best efforts to work and were very
optimistic that Alex would beat the odds. We discussed all the
details of VATER Syndrome. Out of the nine associations,
Alex had seven most of them were extremely severe. It was said
that because of all the internal deformities, Alex was still living.
One anomolie cancelled out another. An example is that most
VATER babies, this severe, would not have had mature lungs.
But, because of his lack of kidney activity Alex's lungs did
develop. It was the most horrifying roller coaster ride of our lives.
In a 5-minute period we could be riding high on Alex's
progress and then crying hysterically because he needed another
surgery or wasn't responding to medication or he had just coded.

We met with the neonatologists, surgeons, nephrologist, urologist,
genetics,etc. You name them we saw them. All caregivers were
excellent with educating us of Alex's condition and treatments.
Good or bad., most were so very caring and compassionate.

One of us was by Alex's bedside almost24 hours a day. The other
one was taking care of Johnny, but we were usually in the NICU
waiting room, but never far away. There were many nights we
spent in the waiting room or in one of the family rooms or
several times in the surgery waiting room. To ensure that we
could stay close to Alex, the chaplain and one of the social
workers helped us to find an apartment across the street from
the hospital. We could see Alex's window from our balcony.

The first plan of attack was to administer the dialysis. We
were educated on the types of dialysis and the pros and cons.
We agreed that peritoneal dialysis was the only way to go.
This meant another surgery to place the peritoneal tube.
Things were going fairly well. Alex's blood pressures were
still low, but he was steady and weaning of the medicines.
Then he would code and would have tobe resuscitated and that
would do damage to the duodenal atresia site, which meant
another operation to repair the site. Finally things were going well.
Alex's blood pressure was fair and he was the strongest he
had ever been. The doctors decided to fix the esophageal
atresia and the TE fistula. A very scary operation,
but necessary. Alex did great he amazed everyone! But, the
duodenal atresia was still not healing and theperitoneal dialysis
was starting to fail. It was decided to try another type
of dialysis, Hemo-Filter Dialysis, which required a minor
surgery. This surgery was done, bedside. Things seemed to be
progressing fairly well. Alex's blood pressure was doing well
without any medication. The hemofilter dialysis was working
while the peritoneal dialysis was waiting for more healing.
Meanwhile, Alex developed a highly contagious infection, which
required him to be quarantined. We called it solitary confinement,
but welcomed the quiet. Alex had always shown sensitivity to
noise and light. This way there were much fewer disturbances.
Things seemed to be ok for a short while. The infection had
even localized to the tubes only and not in the blood stream,
which of course would have been fatal. However, the duodenal
atresia was not healing. After much discussion, we decided to
have another surgeon go back in to that same area to see what
was happening. Alex did very well through the operation;
however, the findings were not encouraging. The duodenal
atresia was not healing and the peritoneal cavity was the cause.
Which in short meant we were losing the option to do
peritoneal dialysis. There was still one more very risky and
not very hopeful option of dialysis, if and only if the duodenal
atresia would heal and nothing else went wrong. But, everything
started to go wrong. Alex was getting weaker, his blood pressure
started to drop and he had to be put back on the medication.

An ultrasound of his brain was now showing damage to the
brain cells, due to the illnesses and blood pressure problems. We
needed a miracle more than ever. It was decided that another
ultrasound of Alex's brain would be done in one week to see the
progress. However, the week was not going well at all. Alex
was very, very sickand weak. On Wednesday, April 22, 1998
the ultrasound was repeated. It was much worse than the week
before, Alex was now considered brain dead. We did not want to
give up hope, and we were willing to take care of Alex, no matter
what his condition, but we did not want Alex to suffer.
All through that day, Alex's body started to shut down. One by
one, each of his limbs would become cold to the touch.
Alex was telling us he was dying. So, we chose to have him
bathed, dressed and taken of all the machines to
be with his family during his last moments with us on earth.

For some reason, that day none of his primary nurses were
on duty. So, the other nurses called them at home and several
of them came in to bath and dress him and to be with him and us
as he died. In the six weeks Alex was in there care, most of them
had grown very attached to him and him to them. They were
always amazed at his demonstration of strength and will to live.
He was truly an inspiration to all who had the honor to know him.

At 8:00pm Alex was brought to us in a private family room by
several of his primary nurses and doctors. We held him tight,
prayed for one last miracle to save our precious baby, cried,
took pictures, said our good-byes, kissed him, told him how
much we loved him and would miss him and that we would never
ever forget him.

At approximately 8:15pm as I was holding Alex and John
was holding John, Jr., Alex passed away. We know this to be
the time of death because John, Jr. let out the most horrifying
scream we have ever heard and at that exact moment,
Alex took his last breath.

Sweet Dreams Our Snooky Man In The Sky!