NEVER GIVE UP...NEVER GIVE IN!
I would like to share the story of Tyler from the beginning...
I had an uneventful pregnancy up until 29 weeks. I was then diagnosed with
polyhydramnious ( that is too much amniotic fluid) An ultrasound done at
the stage raised further questions as to the health of the baby. The chest
and abdomen measurements were too small, one exam questioned if there was
a
bladder another suggested difficulty finding the stomach! I left work at
noon to be hospitalized that same day and then flown by helicopter to the
nearest Women's and Children's Hospital.
One week in hospital and on bedrest felt like a holiday...and I was to do
this for 6 more weeks...NOT.
My water broke and I went into labor at 30 weeks. The doctors ( including
neonatologists, and geneticists,etc) were not very optimistic. We were led
to believe there was a very high probability that our baby would not live.
Almost 40 hours of labor gave us time to choose both a girl's and boy's
name
so that the baby could be baptized immediately. The staff were instructed
to call in the priest if this seemed to be needed. The priest was called,
and as the baby's heart showed signs of trouble he was delivered at high
speed with forceps...
Tyler's resuscitation was very difficult with the neonatal team working in
the next room for what felt like forever (probably 10 minutes) With apgar
scores of 1 at 0,5 and 10 minutes He required artificial everything. We
were
able to see the tiny 2 LB 14 oz baby for a few seconds as they wheeled the
incubator past my stretcher. We were allowed to see the baby in the special
care nursery once they were all settled in. The routine explained to us
felt so foreign. Check in at the front desk to make sure they would allow
you to go in...wash at the large trough like scrub sink (suds for 2
minutes,right up to the elbows) all jewelry, rings, watches, etc. had to
be
removed. Once this was all done we were escorted into the first of 3 large
rooms with rows of incubators. Tyler was so tiny, he had dark wavy hair,
and beyond that lots of tubes and wires. He had an endotrachial tube and
was
connected to a ventilator to help him breath. The special type of
ventilator vibrated like a washing machine to try to expand his little
lungs. After a rest and maybe a few minutes of sleep, we were summoned
to the nursery to meet with doctors. I was terrified, what were they going
to tell us. Had we lost our son so quickly?
Thank God Tyler was basically the same, and they wanted to further discuss
all considerations with us. After the strange feeling of checking into the
special care nursery (SCN) that first time it became our new home. Days
turned into weeks, turned into months. Immediately it was explained that
most premature babies did go home sometime near their due date. We began
to
tell family and friends that we should bring home the new baby in May. At
about 2 weeks of age Tyler was diagnosed as probably having moebius
syndrome. A few blood test would be done on Tyler and on me (mom) to rule
out any other possibilities. Tyler had no mouth of facial movement. Even
his
hands were lacking the small wrinkles and lines that would suggest movement
of them during gestation. His hands both were contracted, almost into
little fists. He got his nourishment from IV's while I learned to use the
breast pump and pumped 6 times a day for 6 months. Eventually Tyler would
receive 1cc of milk by ng tube. It did not stay down so back to iv's.
Eventually his feeds were switched to just breast milk by ng tube. We
slowly
increased the amount and the speed. A syringe was hung above our rocking
chair letting the mild drip in very slowly.
By about two months of age we knew we were not the "typical preemie"
situation. As other tiny beings (some less than 1 pound) were extubated
(removed from the ventilator, and breathing on their own) Tyler could not
last more than a few minutes without ventilation. He had to put up with the
tube in his nose being retaped sometimes twice a day. We loved our daily
cuddles, though it required a nurse and a respiratory tech to help move him
and set the ventilator hoses properly. Some days we rocked in this one
frozen position for 3 hours.
While being prepared to realize that in order to bring Tyler home he would
require a tracheotomy and permanent feeding tube, the doctors began to
express concerns that Tyler may not be able to see or hear. They also felt
that his muscles would never allow him more than slight physical movement.
They began to explain that Tyler would face multiple aspiration pneumonia's
and with such a 'closed' world would not be able to communicate though
mentally was likely fully capable. They recommended not continuing with any
surgical intervention. (In other words, don't trach, stay in hospital on
ventilator, or turn off ventilator and give-up.) We fully intended to bring
Tyler home. We prepared to fight, with the understanding that Tyler must
be
'trached' in order to bring him home on a ventilator.He showed constant
improvement in movement and interest in everything around him. The small
changes were noted by family and primary nurses who spent endless hours
with
him. The doctors only saw him for a few minutes every once in awhile.
Three times over about 5 months we were asked to "make a decision". Each
time our decision was absolute, strong and fully educated! Yes we were
prepared to take this child home, no matter what!!
You can see that moebius was kind of forgotten at this point of our fight.
After 10 long months of fighting, meeting, discussing, and even presenting
our situation to the hospital ethics committee, the tracheotomy was
scheduled for January 1998. The surgery was performed one day after Tyler's
10 month birthday!
There is a very positive story from this point. Tyler was weaned off of his
ventilator a little at a time. By his 1st birthday he was able to come off
the ventilator to attend his own birthday party! After learning emergency
trach procedures, and how to suction and change his trach, I was allowed
to
take Tyler in a stroller and walk around the hospital with oxygen and
suction in tow! Further testing revealed that his hearing and eyesight were
reasonable if not normal. Tubes were put in his ears to prevent fluid
build-up. We reached a point where Tyler only needed his ventilator at
night.
It was time to make the transition to home and community care. We live a
2
hour ferry ride from the hospital, so training had to take place for
nursing
care at home. Nurses were interviewed and hired, the local child
development center was informed of our homecoming. A huge party to say
goodbye to the staff at the nursery was thrown.
After 15 months we were to leave the home we had become so comfortable in.
We were truly leaving family!! The staff had become so attached to Tyler
as
he was the 'big boy' in the SCN. Rarely did they have a baby stay even a
year.We were so excited to be going home. Tyler could sit with support and
even stand if helped though could not actually make transitions between
these positions. Even lying down his only movement was to roll...
Home is a wonderful place. Over time Tyler learned to sit up, stand up,
cruise, walk, push ride his bike,and pet his dogs!! Moebius was pretty much
forgotten, or even ignored until we got home. I try to educate all of our
nurses and community support services with information I print from the
Moebius Foundation web site. We have community education by way of a front
page article and pictures of Tyler in a local paper, and a local interest
TV
program did a segment on Tyler and moebius syndrome. My priority now is to
make sure people don't assume Tyler doesn't understand or has mental
difficulties just because his face doesn't react... people are learning.
Kids are wonderful, they are the ones willing to ask questions.
Tyler does still have many obstacles. We are learning to sign, and he will
be getting an alpha talker to speak. He cannot swallow at all, but still
he
enjoys lollipops (though very messy!)He is growing taller and stronger all
the time. He is running and jumping, and loves to play ball!!
Ultimately----DO NOT TAKE THE DOCTORS' WORDS AS FINAL!!! Listen to them,
think about them and consider what you would do if they are right, and then
PROVE THEM WRONG!!
Tyler is truly a blessing to our family. I would never change any decisions
we made or want to do anything differently. Most of all I feel sorry for
all the people and parents out there who don't know or have a 'tyler' of
their own.
Enough now, please email me if you have similar history, and especially if
an older child has similar obstacles in their daily life.
Denise, Tyler's mom
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