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Due
to my recovery and complications I was not allowed
to go to the NICU for a day after delivery. However
the boys had been immediately rushed over and put on
life support. Caleb was rocky at first but appeared
to be at least holding his own, and the last I had
heard, Corbin he was doing excellent, on minimal
oxygen and looking great! That was until late Friday
night just a little over a day after they were born,
Scott had gone home to get some sleep and I had only
been over to the NICU once so far, and still had not
walked more than four steps. The Neonatologist came
into my room and woke me to tell me that Corbin had
had a massive pulmonary hemorrhage, was on %100
oxygen and still they could not get his saturations
out of the 30's (they should be in the 90's). But
the absolute shock hit when she said; "We can keep
him till you get over to him then you can hold him
as he goes". I still cry now to remember what it
felt like to hear those words. So I got up and
dressed and walked the hallways till I made it to
the NICU, there I found my son, he was blue, he had
a chest tube protruding from his ribs, and a
catheter from his breast bone. They told me as they
inserted the chest tube his chest cavity had
exploded and they now had to suction loose oxygen
floating around in his chest cavity as well as
suction the blood from the pulmonary hemorrhage. He
was on a flat, warmed emergency bed and you almost
couldn't find his tiny body lying lifeless amongst
all the tubing and wires and blood stained bedding.
I sat down and began to talk to him, he never moved
and I knew he couldn't look at me even if his face
weren't covered as to his eyes were so under
developed his eyelids had not separated yet. But
still, as I sat there and talked to him it was like
he knew mommy was there. I know he knew because he
didn't die, as a matter of fact, I watched his
saturations slowly rise from 30 to 70. It took five
hours, but I sat there and continued to talk to him
the entire time, at that point the doctors took over
again. They must have been religiously against
coming to us with any good news. Apparently all the
stress on Corbin from the pulmonary distress had
caused blood vessels to begin rupturing in his
brain, and the bleeding from this type of
hemorrhaging was at a maximum stage. Both of his
ventricles were filled so full of blood they were
swollen hence putting additional pressure on his
brain. They deemed that there was nothing they could
do for this due to Corbin's unstable pulmonary
condition. So we waited, and waited, eventually
anyone would know that pressure building in one's
head is going to cause problems, and it did. Corbin
developed hydrocephalus (water on the brain). They
called a Neuro surgeon in who said that the cure, a
shunt, would literally kill him, but they could
actually insert a needle into his head once a day to
drain fluid and slowly relieve pressure. They had
told us that at this point we had a completely
comatose child who may very well be completely brain
dead anyway. With that we decided the least we could
do for Corbin was make things a little more
comfortable for him in the long run. We decided to
go ahead with the needle thing, only they had to
take Corbin down for a cat scan first just to be
positive nothing had been missed in the head
ultrasound. Of course when the results came back
something very large had been missed, a blood clot
on his cerebellum the size of a quarter that was
just resting up against his brain stem. This meant
that relieving pressure fro m the top of his head
would act as a vacuum affect and pull the blood clot
upward, in doing so it would crush his brainstem. We
knew without needing to be told that you need a
functioning brainstem to be alive, so all the doctor
could say to us was, "All we can do is wait and see
if he lives". There is no one on this earth I have
ever been more disgusted with in my life than that
man. So anyway time went on and on, about four
months later we had Corbin down to a conventional
ventilator on minimal oxygen and we were going to
try and extubate him. He had done so countless times
on his own, but had always needed to be reintubated.
Try after try, the extubation process was
unsuccessful. It was eventually discovered that that
Corbin' s vocal cords were paralyzed so far apart
from each other that he had no functioning airway at
all. So off to surgery we go and Corbin receives a
tracheotomy at about 2 1/2 lbs. Even more
incredible, at four hours after surgery he was
extubated and has never been back on the vent since.
Unfortunately the day after Corbin got his trach
someone had the bright idea to give him his first
bottle; he appeared to wolf it down, so the nurses
continued to feed him for about a week. At about
that point something just seemed funny and after
much trials and tribulations we found out Corbin had
been aspirating on everything he was given orally
and not only that but he had such bad reflux, he was
also aspirating on everything that came back up from
his tummy. Back to surgery, Corbin immediately
received a nissan (knotting of the intestines to
suspend reflux) and a g-tube, he was only about 3
lbs. so it wasn't actually a g-tube, it was sort of
more like a catheter sticking out of his stomach.
Finally after six months at around 5lbs. Corbin came
home; he was only home for about 2 weeks before he
landed himself back in the hospital with respiratory
distress. But with lungs that have been through all
that, a few stays in the hospital are to be
expected, and so we have done that twice now since
he was discharged from the NICU. Nowadays, at eight
months of age, Corbin weighs just over 8 lbs., has
PT and OT each twice a week, and speech once a week.
He had begun to eat a little bit by mouth again but
has since stopped as of two weeks ago. He smiles
now, and is far from comatose or brain dead. The
doctors still don't know what to expect for Corbin,
but how can they when he has shocked them so many
times in the past. Even aside from the story above,
Corbin fought to survive through countless I.V.
sticks, infections, transfusions, e-coli in the
lungs, and the ultimate of discomforts. Sometimes I
wonder why he wants so badly to be here, he is still
wired to his bed, attached to a myriad of machinery,
and medicated to the hilt. Then I remember, it's
because he is my son and I fought for him to be
here, so really we fought for each other. I believe
he knows his family loves him, and we just wouldn't
be a complete family without him. I know this is
long, and I don't expect everyone to read the whole
thing, but if you just browse through and look at
the pictures, well that makes all this effort
completely worth it. After all, just the fact that
there are pictures of my sons is the entire point!
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