Connor weighed 2 lbs., 7 oz. at birth, dropped down to 1 lb., 7 oz., and weighed 3 lbs., 5 oz. when I brought her home a month later.
I was advised by some of the NICU staff to apply for SSI but she was denied; low birthweight, prematurity, and major surgery on the first day of her life didn't constitute a disability.
We were, however, fortunate enough to participate in a formula program specifically for preemies through USF pediatrics in Tampa. In exchange for five months of free formula, free doctor visits, and Babies R Us gift certificates, I journaled Connor's feeding times, amounts, reactions to the formula, and graded her poop (by color, weight, consistency).
The formula was ready-made and supplied by the makers of Neo-Sure.
I advise all preemie parents to check with local med schools, children's medical services, and pediatricians about the possibility of such a program in your area.
On the clothing and diaper front...we couldn't find preemie diapers small enough to fit her so the hospital supplied them (NOT for free) for two months. Regular preemie diapers didn't properly fit until she was nearly six months old.
We resorted to doll clothing from Babies R Us and I bought her a puppy sweater (designed for a chihuahua or small Pekingese type dog) at WalMart so she'd have something warm!
Have any of you experienced positional plagiocephaly?
When Connor was almost seven months old, the pediatrician said the flattened spot on the right side of her head was possibly caused by her skull fusing too quickly. He scheduled cat scans, bone windows, and meetings with the craniofacial team at Tampa General Hospital.
I was terrified, the thought of her undergoing yet another major operation then being forced to wear a helmet for two years was daunting.
Bone scans showed that her skull was fine, the flatness was positional plagiocephaly. Simply put: due to prematurity, Connor wasn't quite strong enough to lift, rotate, and move her head as other six and seven month old babies (full term) did, thus she favored one side of her head. The flatness filled out as she grew, gained mobility, and I continued strengthening exercises with her.
The bone windows procedure was amazing, it's a process similar to the 4-D sonogram technology. Her head was scanned and her brain appeared on a computer monitor so lifelike that it seemed as though I could cup it in my hands. I could distinctly see it pulse with her breathing and see veins expand per blood flow. Seeing that part of my child so up close and personal was mesmerizing.
I too keep journals for Connor, I've slacked off from writing in it every day (she's 2 1/2 now, kinda hard to keep up) but I record daily events in our life, the nation, and the world. I keep scrapbooks and picture books so she'll never have to wonder who, what, when, were!
Also, I buy cards for her on every birthday and holiday, write special messages inside and enclose a photo from that period of time. The cards are sealed and will remain so until she's 18 years old and wants to open them on her own.