NICU Hell
Michael Chambers (mchamber@postoffice.ptd.net)
Sun, 10 Mar 1996 22:55:59 -0800
Not to try to play "I can top that" but,
Andrew was born 12/19/94, on 12/23 they sat us down to tell us blood work
showed an abnormality in his ninth chromosome (note this was 2 days before
Christmas), the test results were not conplete at that time so they could not
tell us exactly what that would mean for Andrew, but it could mean
retardation, dismorphic features, and so on. Since it was the holidays the
final results on the test were delayed, then they needed our blood to
compare, and it took a total of tree weeks to sort it out. I should add we
have another son Ben, who was 2 at the time, I we had to deal with a 29
weeker in the NICU, a Christmas for our 2 year old, and a wife and
mother-inlaw who felt Christmas diner was the right time to discuss getting a
lawyer to fight the hospital to have support discontinued (Andrew was not on
life support at that time, although Christmas morning he started feeling the
effects of his first staph infection, contracted while in a hospital, and was
put on O2 for the first time except for 6 hrs on the vent at birth.)We did
the works in the NICU, pneumonia, apnea, jaundis,anemia, and ROP. When it was
all said and done we spent 2 months in the NICU and came home with O2 @
75cc/min, monitors, and a ton of meds.
Sorry to leave you hanging, the chromosome thing turned out to be nothing, it
is an exact match to my 9th, (and I could be considered normal).
We were home for 4 days when I got a call at work, they were on there way to
the doctors office, the visiting nurse was by for his daily check-up and did
not like what she hear in his chest. When I got to the docs. office I found
Andrew gasping and blue, the doc came in at the same time and sent us to the
hospital, thank god it was right next door. A little more O2 and an extra
dose of Lasix and he was breathing better. So there we were back in the NICU,
and more test, then they thought they found a problem with his heart, so we
were transfered to Hershey Medical Center.
Andrew was put in a ward type room (4 beds) no gowns, no scrubing, nothing, I
freaked, they did not want to hear in, he had come for the outside so he
could not be put in there NICU. Their test showed no problem with his heart,
butthey agreed to keep him over the weekend to do a MRI on monday. I walked
in to Andrews room late Sunday night after going home long enough to have
dinner, he had crashed big. An hour later he was in the PICU on a vent.( it
was 3 hours before I was allowed in to be with him.) That begain 31 days on
the vent. Blood work-ups showed he had picked a flu virus while in the
hopsital. After the first 2 weeks he was worse, and after some calls he was
returned to the NICU where he was born. No one needed to speak when we first
returned, it was clear in there eyes, the vent was maxed out, they switched
to another type (72 hrs max.) that didn't help, the doc gave him a 25% chance
of making it. He did improve, leaps and bounds, and after 31 days he
extubated himself, twice, after the second time they gave up and put him in
an O2 hood. Over time he was weaned to a cannula (which he still uses) and
after 4 months we were home at last. Outside of RSV this year he has been
doing good.
His two problems are his lungs, they say he need to out grow the damage and
he will be fine, and feeding, which is what he needs to grow. Before he was
put on the vent. he eat like a horse. He would take 30cc in under 5min. for
the first time he tried, after the vent, we have been on NG tubes, NJ tubes,
and the docs want to put in the G tube.
The horror stories go on, but I don't want to scare those still in the NICU,
but as a parent, we need to be there (to serve and protect our children), we
need to ask the questions to learn what our children need. The NICU experence
is more that a person should have to bear, but it's not like we have a
choice, so get a good grip and hang on for a hell of a ride.
To those out there with children still in the NICU, my thoughts are with you,
and remember you are not alone, we are out here .
Mike
PS I will ramble more later.