Charlotte Amalie Knickerbocker was born at 23 weeks, 2 days gestation. She weighed 560 grams, and measured 11 inches. That was almost 33 months ago. Today, she weighs 12.5 kilos, and measures 33 inches.

That means she is 23 times her weight at birth, and three times her length. For reference, that would be the same as a 7 pound baby weighing 161 pounds at 33 months.

Top Pictures: Charlotte, 32 months actual
Bottom: Charlotte, hours after birth

It’s not hard to say that she has come a long, long way from her fragile beginnings. The list of things she has overcome is almost too long to discuss. Bilateral Cerebellar infarct, Heart failure due to PDA, PDA ligation, BPD, ROP, Retinal Detachment, Cerebral Palsy, Sepsis, Blood Transfusions, Vent dependency, Central Apnea, Obstructive Apnea, Oral Aversion, Chronic Aspiration, Reflux, Tube Dependency, and the list goes on. And on, and on, and on. Suffice it to say, she’s our miracle.

But it also is not hard to say that she has a long, long way to go as well. Charlotte has a team of incredible professionals keeping her together. On Mondays, she visits with Speech Therapy and Physical Therapy. On Tuesdays, she participates in the Infant Program through San Diego Regional Center and San Diego Unified School District. Wednesdays it is back to therapy, this time for Occupational Therapy and Speech Therapy. Thursdays are her days off, and Fridays she goes back to the Infant Program, as well as Therapy, for Occupational Therapy and Speech Therapy.

Top: Medical Supplies for Miss Charlotte.
Bottom Left: Medical Equipment which Charlotte uses on a daily basis.
Bottom Right: Charlotte’s feeding and medication schedule.

Exhausted? Me, too. Each day her nurses come for ten hours, working on her at home therapies, as well as taking care of her daily medical needs (CPT, nebulizers, trach care, g-tube care, medications, inhalers, tube feedings, etc).

She sees her Pediatrician, ENT, Pulmonary, Ophthalmology, Developmental Pediatrics, Neurology,  and GI. We travel an hour and a half to see a feeding team, trying to help Charlotte wean from the feeding tube.

The point of all this?

Prematurity doesn’t end when you leave the NICU. It doesn’t magically disappear, just because preemies are supposed to “catch up by two.” Prematurity doesn’t just mean a tiny baby– it’s a condition which affects the entire family.

I can share the statistics– 1 in 8 births are premature. Every 30 seconds, a baby dies from prematurity. Micro-prematurity (Prior to 28 weeks gestation, weighing less than 800 grams) makes up 0.7% of all births. The United States of America has some of the worst records on prematurity of any developed nation. A baby’s brain at 35 weeks weighs only 2/3 of what it will weigh at 39 to 40 weeks.

But I think sharing our story is more moving. Or sharing Melissa’s story. Or Jessi’s. Or Tatum’s. Or Morgan’s. Or Jackie’s. I could go on. (And please do. If you blog about your preemie, give us a link in the comments!)

Know our stories. Know the symptoms of premature birth. Know the lasting effects of prematurity.

Be aware.