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 tracheostomy 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!
