Toby is a former micro-preemie who was born at 26 weeks'
gestation. He spent 4 months at the University of Washington
NICU and another month at Seattle Children's Hospital. He had
a difficult course as a preemie, as most 26-weekers do. Now he
is a very happy, strong, beautiful boy.
Toby was born Feb. 16, 2004. He was big, at 1100 g (2 lb 7 oz)
thanks to my undiagnosed type-1 diabetes. Within the first
week of life, he developed pneumonia which left him clinging to
life for quite a while. He had a PDA that also was causing him a
great deal of difficulty. (For a view of what life is like in those
early days, click here.) The PDA was surgically closed on
March 16, his one month birthday. We were very, very lucky
that he was strong enough to withstand the surgery. After the
PDA ligation, he improved steadily, eventually weaning off the
ventillator then off CPAP, onto regular oxygen. (Here is a view
of later NICU life.)
Once Toby reached about 4 months of age, his progress
seemed to stop. He also never regained his voice after he was
extubated. He unexpectedly went into respiratory failure.
Eventually, we learned that he had a vocal cord that wasn't
working properly, and because of that and some other
problems in his upper airway, he wasn't able to swallow
properly. He was aspirating his feeds into his already badly
damaged lungs. So, June 11, Toby had a G-tube placed. He
started improving immediately. On June 23, he went home on
oxygen, a feeding pump, an oximeter, a wedge and seven
medications. But he was home!!!
He has steadily grown stronger and healthier since then. He
received phyical therapy, speech therapy, feeding therapy, and
special education for his first three years through the amazing
folks at the Northwest Center for Child Development. He had
mild global developmental delays. His speech was very
delayed, and he developed significant oral aversion, all of
which took a great deal of effort to resolve. Now he is
developmentally caught up and not in need of services. He
talks up a blue streak and eats more than his parents some
days! He is no longer on the G tube or any of his old meds. His
eyes have some coordination issues but his vision is fine. He
enjoys all of the 'regular' issues of a kid his age, which we
Want to know more?