About Susan

Susan E. came into the world in November of 2003, 12 weeks premature and weighing 15 ounces. Unbeknownst to me at the time, I had a pregnancy complication called pre-eclampsia that caused the blood flow through the umbilical cord to be restricted, limiting the baby's growth. The pre-eclampsia turned into a condition called HELLP Syndrome, where my internal organs began to swell and my blood pressure shot up as my liver started to fail. I was, at the time, 29 years old, healthy, and had no reason to expect any trouble with the pregnancy.

When the shit finally hit the fan, Susan was delivered by emergency cesarean. It was the first of many adjustments I'd make, as I'd always fancied myself the earthy, granola, natural birthing type. Suddenly instead of being six months pregnant I had a scar on my belly and a tiny, writhing, REAL little person with my name written on her identity card.

She was, and continues to be, a survivor. 95-98% of babies born weighing less than a pound have some degree of cerebral bleed, which cause brain damage. She did not. Nor did she develop an ulcer, or a heart defect, or retinal detachment, or "gut rot," or many of the really bad complications of prematurity that could have threatened her survival. She did spend five and a half months in the hospital, many weeks on a ventilator, suffering damage to her lungs and many painful procedures. She never successfully learned to eat from a bottle, so we reluctantly agreed to have a g-tube inserted in her stomach so we could take her home.

Over the next year at home, she has amazed us all. She is funny, engaging, and stubborn. As far as we can tell, her mental development is coming along fine. She is however, held back by physical growth. Her oral feeding deteriorated as she developed uncontrolled reflux, vomiting after every tube feed, and she refused anything in her mouth but her one, precious, pacifier. Her weight crept up, or plateaued at times, but she has remained far below growth curve.

Her gross motor skills are significantly delayed. At 20 months, she doesn't walk or pull to a stand. She won't crawl, but she scoots around very efficiently. I think her lack of crawling is more stubbornness than anything else. Her fine motor skills - reaching, grabbing, using her hands - are quite good. Since talking uses the same musculature as eating, her speech is delayed. She babbles, but is not using words yet. Feeding is a long, hard skill to learn for someone who didn't get it in the first place. She is making progress, but it will be a long time before we can take our her g-tube.

Updating this, since about two years have passed since it was written -

Susan's almost 4. She is like any three-year-old in most ways: she is funny and cute, has a passion for Clifford the Big Red Dog, walks, climbs on the playground and throws embarrassing tantrums at Target. Her speech is delayed, but making rapid progess. She can identify objects and speaks in short sentences. She reads along with her favorite books, having memorized the words.

Eating continues to be a challenge, but she's made such great progress. She can eat smooth foods like yogurt. We regularly puree whatever we're eating and feed her that orally, and (diluted) through the feeding tube. She hasn't figured out chewing yet, so solids either get spit out or she keeps them in her mouth long enough that they dissolve. But she'll put anything into her mouth, and hardly ever gags anymore. It's huge.

She's still TINY. No matter how much food I pump into her, she'll get taller but not wider. At almost four, she's about the weight of a typical 15 month baby, although her height is on the low range of normal.