STATUS AS OF 4/30/2006
(almost 10 MONTHS OLD):
PHASE 5 - The Birth
Anthony was born at 8:06 on July 8, 2006 in an easy vaginal delivery with little surprises. He weighed 4lbs, 9
oz. and was 19 inches long. It took him a full minute or so to get his first
breath and when he did cry, it sounded like a kittens meow. But he opened up
pretty well after that and had high APGAR scores (9 I think).
Well after
the baby is born, the birth plan is no longer needed, but a plan of care is. So
trying to switch modes …
Part of his care plan was to allow Anthony to get
special care in the NICU and not stay in our room with us. Our medical team had
agreed that this would allow the nurses to give him the best care possible and it would allow the team of specialist to look
him over and give him the best care possible with the hopes of eventually going home with our baby.
After his birth, he was whisked away to the NICU as planned but also accessed for abdominal surgery (we
were elated he was healthy enough at birth to be considered and felt our prayers were answered). Only, upon transferring to the Children Hospital, he was turned down by the bio-ethics committee. They felt he was too
high a mortality risk. We have to pick our battles and I needed more info to
even try to have an educated conversation with this board. So we spent 2 weeks
with every possible test you could imagine, CT scans, MRI, yada yada yada … Thank God for Health Insurance … his
medical bill for that two week period was close to (if not just over) $50,000. If
we had not had a well baby plan in our coverage, I’m not sure we would have had the same financial support in wanting
to access everything going on with him.
We choose not to immediately NG feed tube him if he
didn’t eat, I asked we give him the first three days to try with mom nursing as our other children survived that and
if by day three, he wasn’t doing well (just like a well baby) then we would discuss the NG tube. Anthony only nursed once :’) That was a
beautiful moment ;’)
Within the two week period in NICU, diagnostics determined
that Anthony has a tethered spinal cord, agenesis of the corpus callosum, underdevelopment of his cerebellum, two major heart
defects, preliminary pulmonary issues arising and renal issues as well. He was
born with a smile that will brighten even the darkest of souls and wisdom in his face that makes even a skeptic ponder. He is unconventional and will not fit into any “textbook” stereotype. He is Anthony. And we love him just the
way God made him. In Gods eyes, he is complete.
He stayed for two weeks only to get his electrolytes
in balance. The next few months after his birth and discharge, we felt informed,
overwhelmed, out of control of his situation and so much just humbled that all we needed to do was love … nothing more
and nothing less. There was comfort (ironically) in that we could do nothing. If I could have done something, I’d have been more frantic to do it –
instead of gaining peace and acceptance of this love child.
