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Samuel Tycho Johnson
Born: February 2, 1997 10:26pm - by emergency C-section
Gestation: 24 weeks 1 day
Birth Weight 1 pound 10 ounces (737 grams)
Length 12.75 inches
Delivered by: (The Fabulous) Dr. Alexander Brickler OB-GYN and Kathy Parrish ARNP
Parents: Glenn Johnson and Ginny Ellsworth
The probability that Sam would survive went from 10% before the C-section, to 50% after he was born. We saw that as a very encouraging improvement. But the medical staff tried to tell us that the odds weren't good. We focused on Sam, not the odds.
Sam in the Neonatle Intensive Care Unit (NICU) at Tallahassee Memorial
Preemies usually have to undergo a surgical procedure - the patent ductus arteriosus to shut off a small blood vessel from an artery near the heart to the lungs. In full term babies this occurs when the baby starts breathing on it's own. This was the first of a long line of surgeries Sam would require.
Ginny with Sam on February 12, after his PDA (patent ductus arteriosus) surgery
On February 17 sam was diagnosed with NEC (necrotizing enterocolitis) which was life threatening. Our decision was to have corrective surgery which in itself had a high probability of being fatal. But we felt it gave Sam his only chance at survival. Dr. Crooms performed nothing less than a medical miricle by giving Sam an ileostomy. Sam was only about 4 inches at the waist at the time. Sam made it through with flying colors and the staff of the NICU proclaimed Sam a certified "fighter" from then on.
Sam's "home" for the three months - the NICU
Late in February Sam's body was attacked by a combination of viral, staph, and fungus. It started in the morning as small dot on the back of his leg and by afternoon, he was infected from the back of his knees to his shoulder blades. For two weeks the NICU doctors and nurses fought to treat this life threatening infection. In the end Sam showed his "fighter" status again. But the infection left his body badly scarred - inside and out.
We finally get to hold Sam for the first time on February 26, 1997
 
Ginny feeding Sam with a G-Tube March 3
Sam needed supplimental Oxygen for the first several weeks
 
With the scare from the infection over, concern turned to Sam's eyes. Preemies often develop a syndrome called Retinopathy of Prematurity (ROP) where the blood vessels in the eyes grow too fast and can cause blindness if untreated. Laser surgery is the proscribed treatment. However, Sam's case was compounded by a cataract in the right eye. So in March, Dr. Steinmetz performed cataract surgery on Sam's right eye Then in April the ROP laser surgery was performed. Unfortunately the retina in the right eye detached, which resulted in blindness in that eye. The surgery on the left eye was a 100% success and our wishes that Sam would be able to see us were met.
Sam after laser surgery with friend
This shot of Sam holding Ginny's finger after the second
laser surgery gives a good idea of how small a guy he was even
in April. It was a favorite of the nurses in the NICU.
Sam continued to do well despite all the surgery and we spent many hours holding Sam on our chests in a bonding technique called "Kangaroo Holding".
Ginny "Kangarooing" with Sam in April 1997
We also spent a lot of time reading and singing to Sam through
the door of his isolet
We also began the process of learning to tend to Sam's needs. Besides learning how to bathe such a tiny guy, we also had to learn about care and maintainance of his ostomy bag. We eventually got so good at ostomy care that we felt like a pit crew - able to change a bag in less than 2 minutes.
Ginny giving Sam a bath in early May 1997.
By the beginning of May, 1997 Sam had made it to a whopping 4 pounds and was moved to the Intermediate NICU for a couple of weeks. Then after 109 days, 16 hours and 12 minutes in the Neonatal Intensive Care Unit Sam finally got to come home with us. It was very strange to have him home and not to go nightly to the NICU.
Ginny with Sam at home...FINALLY!
...but that's not where Sam's struggle ended. To continue the story, click here:
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