Hi! My name is Linda, I am married and I am a stay at home mom.
Our NICU journey began a little over ten years ago....
On September 28, 2001, at 30 weeks gestation, our son Collin was born. He weighed 2lbs 1oz, and was 14 1/2 inches long.
was delivered via emergency c-section. I had developed severe
pre-eclampia and HELLP syndrome during my pregnancy. He was IUGR (small
for gestational age) and had RDS (respiratory distress syndrome).
was immediately intubated and sent to our local Children’s Hospital
(20 miles away). I wouldn’t see him again for seven days.
As most preemies do, he did very well his first three weeks of life (I believe they call this the “honeymoon phase”).
week three, he was 3.5lbs. Doctors felt he was doing well enough to be
transferred back to the hospital he was born in, to feed and grow.
Little did we know that our nightmares were only just beginning?
Collin contracted a staph infection (staph epi). He was re-intubated and transferred back to the Children’s Hospital NICU.
eventually recovered from the infection, however he now had Severe
Bronchopulmonary Dysplasia (BPD) and the NICU team was unable to be wean
him from ventilator.
On December 18th 2001, Collin received a tracheostomy and g-tube.
Once at home and away from the hospital environment, Collin made
tremendous strides. He started to reach some milestones such as sitting
up and crawling.
He was off the ventilator by June 2003.
August 2003 Collin was decannulated. He just loved the sound of his
voice (and so did we) and talked in sentences rather quickly!
He started walking in January 2004 he was 2yrs 4mos (ironically the same day he came off Oxygen).
In August 2004 we no longer required home nursing.
started eating 100% orally (yes, the feeding journey was long) by June
2010, no longer requiring the use of his g-tube. His g-tube stoma was
surgically closed in September 2011.
As a result of his BPD, he developed exercise and cold induced Asthma and still Collin does require his flu shot yearly.
He has many specialists that follow him. Pulmonary, Gastroenterolody, Endocrinology, Neurology, Developmental Medicine who has given him a diagnosis of; Cognitive Disorder, secondary to a complex medical history, Anxiety Disorder (apparently commen in preemies) and secondary autism (because the first two diagnosis' wasn't enough! ugh..)
He doesn't stop talking, and oh how I cherish the sound of his voice. He is a happy, funny, sensitive, compassionate, and OH SO strong willed child! (just so you know that preemie "strong will" does NOT go away).
Of course this is just a short summary of the past ten years.
I couldn't be begin to tell you in just one page all the ups and downs and emotions of our journey.
I can tell you, is would I have change anything, probably, who wants their child suffer? however, I have learned so
much about myself and about this unique world they call special needs, My son teaches me more about life on a daily basis than anyone could in a