At about three months of age, we noticed Cullan had a small bump on the top of his head. Our doctor, who is very conscientious about missing even the smallest thing, sent us for an ultrasound to check it out. It turned out, he only had a little extra bone in that area, perfectly normal. We believe with all our hearts, God gave Cullan that bump so his doctor would be conscious of his head and careful to check it closely at each visit. Because, that is exactly what she did. Her careful attention was about to change Cullan's life forever.
In April of 2007, Cullan went in for his eight month visit, all was
normal except his head growth. His head had not grown at all. Upon
close examination, she found Cullan's front soft spot was completely
closed. She sent us for a series of x-rays at our local children's
hospital where they found Cullan's metopic suture was completely fused.
He had a condition known as metopic craniosynostosis. Our skulls are
made up of several sutures in the back, sides and front. Cullan's front
(metopic) suture had fused prematurely. Complications resulting from
this are deafness, blindness and brain damage. The brain has no room to
grow in the front and the eye cavity remains small resulting in
damaging effects for the eyes and ears. Intercranial pressure is
another threat that can occur at any time if left untreated.
Whirling from the news that our child had a life changing and
potentially deadly condition, we began to pray and enlist any and
everyone we knew to do so as well. God had surrounded our family with
an amazing support system through our church. Our Sunday School family
reached out to us in ways beyond belief. God was so real to us through
this time, it sometimes felt like we could actually feel His loving arms
wrapped around us. He ordered each and every step we were to take in
the following days.
Things were moving fast and decisions had to be made quickly. We had no
idea where to go, or how to proceed. One morning, I was in the kitchen
praying about what to do, and asking God to guide us where we should
go, when the phone rang. It was a pediatrician's assistant whom I'd
never met telling me, this doctor (whom we had never met and did not
treat our son or know him in any way) wanted to see our son. He had a
close friend's child whom he had treated with craniosynostosis as a
child seventeen years ago. He had walked their family through the
process and wanted to help us. This close friend of the doctor's worked
with my aunt who had casually mentioned Cullan's situation at work.
His assistant scheduled us immediately to see him on April 10, 2007.
This God sent pediatrician looked at Cullan's x-rays (skull series) and
confirmed his diagnosis. He began telling us the treatments available
to us throughout our state. He knew each surgeon who did the procedures
that Cullan needed, personally. He gave us his opinions of our best
options and why. He then educated us on the questions we would need to
ask our surgeons and what the procedures were like. He got us scheduled
that very afternoon for the ct scans we would need, as well as our
appointments with the specialist we would see out of town. We were
somewhat in shock with all the information we were trying to absorb, but
we were very much aware of God leading us each step of the way, where
we had not known where to turn only hours before.
Upon arriving at our local children's hospital, Cullan would not be
still enough for his CT, so an iv sedation was necessary to get the
pictures they would need. I held him in my arms as they started the iv.
As they put the medicine in, his little body went limp in my arms. I
will never forget how that made me feel as long as I live. I cried like
a baby. I laid him on the table, and they had me leave the room to
wait. The anesthesiologist carried him out to the waiting room to me
about twenty minutes later, still asleep. I was able to hold him as he
groggily awoke. The ct pictures were by far the best portrayal we had
seen of Cullan's condition. It was very easy to see how the skull was
fused in the frontal portion and the other plates were not. We had
everything we needed to head out of town to see the team that came so
highly recommended by people God just dropped into our lives.
April 18, 2007
We packed the car and headed out for our three
hour trip with our not quite nine month old and three year old to see
the doctors who would help our sweet Cullan.
When we arrived, he
showed us the ct scans and explained exactly what he would do. Cullan
would be sedated and monitored closely throughout the entire procedure
which could last anywhere from six to ten hours. A neurosurgeon would
make the incisions through the skull, then the craniofacial
plastic/reconstructive surgeon would do the rest. A hole would be cut to
make space in the top front portion of the skull to allow room for the
growth of the brain. The forehead and eye cavity would be totally
reconstructed since it was too small for all the growth that would need
to take place. Blood loss was a factor with the procedure, and with
Cullan being so small, he would need transfusions throughout the
surgery. The family needed to donate blood with Cullan's exact type to
prevent complications. We were told his little head would be shaved so
be sure to cut a lock to save before bringing him in.
Monday, April 30, 2007
We arrived the night before with both
our mothers since we had an early appointment the next day. Monday was
filled with all the pre-operative procedures. Checking his overall
health, and blood work. We also met once again with the surgeons to go
over exactly what they would be doing in the procedures. Cullan would
be having four separate procedures done. For those who love knowing the
technical side of things. I will list them: craniofacial
reconstruction, bilateral canthopexies, bilateral temporalis muscle
flaps, cranial base osteotomy.....what a mouth full!
We were able
to look at pictures of other children to somewhat prepare ourselves for
what to expect. We were aware there would be a lot of swelling as well
as a drain tube connected to his head underneath the skin for the first
few days. But, as many of you know, nothing can quite prepare you when
it is your child laying there so helpless looking. Praise be to God for
He is always sufficient and prepared even when we're not. That evening
in the hotel, we played, we cut baby curls, we cried, and we
May 1, 20007
The absolute longest day of our lives....Cullan
was up at 1:00 a.m. The last time he was allowed to nurse before the
surgery. Then off to the hospital by 5:30 a.m. We were back in the
holding area with our sweet boy by 6:00 a.m. to wait. He played in the
crib they had for him for a little while as we met each of the people on
Cullan's "surgical team." The anesthesiologist, nurses, the surgical
intern and again his surgeons. All were so helpful and reassuring.
They assured us they would not take him away screaming. He could have
some "happy juice" to make him drowsy for when they took him back. But
our God was there we have no doubt and angels surrounded us the entire
week. He is in the details, people, believe that! We lived it first
hand! Our angel snuggled up to me and went to sleep. His nurse just
carried him back and got his iv going with him none the wiser. We knew
we sent Cullan with God to guide and watch over him. No, it still was
not easy. But, we rested in the peace that He had brought us too far to
desert us now.
May 2, 2007
All the surgical procedures were to begin at 7:30 a.m. He was back in
the O.R. and by 8:30 they called the waiting area to let us know they
had him asleep. 9:30 came and our surgeon came out to see us. My heart
stopped. He let us know that they could not get an arterial line in
his arm. This line was how they would monitor his vital signs through
the procedures. The anesthesiologist wanted good readings, and they
were not having any luck with his little arm. He informed us they might
have to use the artery in his groin. They generally avoided that due
to blood clots. They would let us know something in an hour. During
this time, some close friends of our arrived and surprised us. They
came all that way to wait with us through the surgery. Friends I
believe God gave us for just this time. Their daughter was born with
craniosynostosis just seven years before. We had gone to college
together and were reunited at the church we attended one evening three
years earlier. Cullan had not even been born at this time. They shared
their story of what they had experienced with their daughter the night
we "bumped" into each other. Little did we know how God would use them
in our lives down the road....
Still no artery, he remained stable. At 12:30 the surgeon came out
again to let us know they had called in a general surgeon to make an
incision in his arm and they could see the artery. They felt like this
was going to work. 2:00 came and the anethesiologist came to see us.
The arm line had not worked. They could not get a return. They made an
incision through the groin and sewed up his little wrist. He was
losing blood and need more FFP (Fresh Frozen Plasma) he had already gone
through the supply donated by our family. They would be using more
from the blood bank. 4:30 Cullan is doing well, only a few hours
left......5:15 Surprise! They finished sooner than they thought. Once
they started it only took a little over 3 hours! Things went well. He
would need to continue receiving transfusions for the next day. He was
on a ventilator to help him breathe as well as to help him rest so they
could watch the fluid on his lungs-all complications due to surgery.
6:05 p.m. Cullan was moving up to ICU and we could see him in an hour
or so...! Finally, we would get to see our baby!
No matter how many pictures we looked at with the awesome childlife staff could prepare us for how our
child would look. All the preparation in the world still did not
prevent me from stopping dead in my tracks as we stepped into Cullan's
room in the ICU. As my breath was taken away at the sight of my sweet
innocent little boy, Steven took my hand and gave me the nudge I needed
to keep moving. That first night proved to be the hardest and longest
of the entire ordeal. The ventilator helped make Cullan's breathing
easier. He had a lot of fluid build up due to surgery, and had a very
strong rattle sound. At that moment we became very aware of all the
risks due to surgery that were explained to us beforehand. They were
truly a reality now. There were tubes for fluids and plasma. There
were wires to monitor his heart on his chest. Wires on his feet. Drain
tubes in his little head, to drain blood from the incision. An
overwhelming sight....No one ever said Cullan was in danger, but his
nurse for the evening did not leave our room the entire night. And as
she left that morning, she said to the nurse who took her place, "We
made Cullan better!" We know "God" made Cullan better. But, how much
we appreciated faithful nurses whose skilled care helped our son.
Day 2, much better than day 1. Day 2 finds us with a groggy little
baby still very heavily medicated to avoid pain. He is still receiving
iv fluids, and the drain will come out later on. No more respirator!
In my opinion, that is a huge step in the right direction. There is
something so intimidating about those things. Scary with a capital "S".
Swelling is still not at its peak. The head wrappings remain for the
morning but do come off later that day. As a note to parents...most
major changes happen during shift change in that two hour period parents
are asked to be out of the room. I did not really like this
arrangement to begin with. As a parent, you don't want to leave your
child's side even for a moment, but it was hospital policy and it did
force us to get out, get some air, shower and eat. All good ideas since
pulling vigils like these are exhausting in more ways than you can even
realize at the time you are experiencing them. If this is a burden you
plan on carrying alone, I don't recommend it. God's Word says in
Matthew 11:30 "For my yoke is easy and my burden is light." If we had
not given this burden to God and carried it His way, "God style" it
would have crushed us and been impossible. He is there waiting to carry
us through if we'll let Him, and not waste valuable time trying to
blame Him or being angry with Him for "allowing" it to happen in the
first place...Something to think about.
During the day
2 shift change, the drain was removed and Cullan's head dressing were
removed to reveal the incision and of course "THE SCAR." The horror
stories we had heard and read about preceding this surgery concerning
the scar were numerous and looming over our heads. We discussed the
incision Cullan would be having with his neuro-surgeon. The
neuro-surgeon actually performs the initial incision. There were
several options, the one discussed was just straight across from ear to
ear, and because it held the least amount of risk for blood loss, was
the one chosen. However, for whatever reason Cullan ended up with the
wavy incision done. We had asked about that in pre-op meetings since it
seemed to result in less complications down the road, but had dismissed
it because we certainly did not want to risk blood loss for the sake of
vanity. Obviously his doctors agreed on choosing this route for Cullan
after all was said and done-- we just hadn't expected it. So we are
unwrapped and unhooked to the point that is allowed for now, all that's
left is healing, healing, healing.
Along about day 3, Cullan came down with a horrific gas bubble I guess
would be the best way to describe it. He screamed and cried. That day
proved to be long and hard, both for him to experience and for us as we
watched. Mylicon finally worked its wonders and relief set in.
Cullan's nurse was amazing to us, she situated him where he could nurse
several times a day just by lifting him, cords, lines and all out of
bed. We pulled the rocking chair as close to his bed as it would go,
and managed just fine. That seemed the most comforting thing we could
do for him besides rest our hand on his belly or stroke his arms and
legs for that comforting touch. He was so swollen of course he couldn't
see us. For a baby, that had to be a frustrating experience to feel
pain and hear familiar voices, but not be able to see or communicate.
Day 4 brought swelling down, we continued on in our little routine of
singing, listening to music, reading stories to Cullan, praying over
him, for him, with him......day 4 brought with it light at the end of
the tunnel. This was also the last day to receive plasma transfusions.
He did get them all day of day 4, and removed them that evening. Some
children need more to get their levels back to normal, some less.
"When you see his little eyes, then you can leave ICU." That is what
our doctors had us watching for on Day 5, and at the very end of the
night, we felt for sure his eyes would be open by the next morning. He
was responding to us and being more playful. The next day, his eyes
opened just little slits and a huge smile was on his face. We laughed
and cried, and ran to get his nurse to let her know we could move!
Yeah! Late that evening, we moved down to our new room. We could both
stay with him in that room. He had videos he could watch, goodies to
eat, and not much longer before we could go home. We sat and played and
rocked and felt good to know that God was healing our Cullan, that He
had not left us for a moment and that He would see us through this until