Audrey Jane Miller is a sweet, silly, fiercely strong-willed and charming tow-headed pixie toddler who is cherished by our family. She is also a CDH survivor. Congenital Diaphragmatic Hernia, or CDH , the birth defect that has been defining her since my 19 week ultrasound is finally fading to the background of who Audrey is and we couldn't be more thankful. It's been a long road to get here though.
Our spunky girl turns two soon and reflecting on how far she has come is a daunting task at best. She was born May 4, 2006 and stayed in the hospital until July 3rd. Her course was pretty middle of the road for CDH babies although her first few nights were harrowing to say the least. We were told 4 times that it may be time to talk about letting go. Despite months of research and bonding with other CDH moms, we were never fully prepared for the helplessness of what was unfolding around us. Except for the 85 decibel shaking of the High Frequency Ventilator that was keeping her alive, she was a still and silent newborn. Audrey had her repair surgery on May 9th, was extubated on May 27th, held for the first time on May 28th, and home by July 3rd. She came home on a reflux medication and with a naso gastric (NG) tube for feedings although she did breastfeed about 20% of her intake (a remarkable feat for a CDH baby). Trouble started in late August though that would mark the beginning of a very tough first autumn for Audrey Jane. She was hospitalized 6 times between August and December; twice for major surgeries. She had a bowel obstruction that landed her in the Pediatric Intensive Care Unit for 4 nights and in December she was finally well enough to have a Gastronomy Button placed. Between those she was admitted several times for pneumonia and other procedures. Those first seven months netted over three months of total hospital time, an average of 10 doctor visits per month (spread between her pediatrician and 4 other specialists), 4 therapy sessions per week at an office and 5 others per month at home, and I won't even dare to assess the time spent on feeding pumps and breathing treatments. We really struggled then but we knew how fortunate we were to have those struggles and appreciated the privilege of it all. And, although it was so rough, Audrey's big personality got us through it all. Throughout her course, she has called the shots and given looks (smiles and stink eyes) to let you know what's going on. Heaven help the person who says she can't do something! Once in her early days while under heavy paralytics and sedation we swore we saw her move only to be reassured that "there's NO way she's moving right now". A few seconds later, missy did a high kick right when that person was looking! We have countless stories like that.
Looking at her today, as long as you don't notice how fast she breaths or see everything her shirt hides (scars and her G-tube), you'd never know she had such a rough start! Audrey's long term prognosis is fabulous. Eating is a continual battle but we're hoping that her tube feedings will end before she is three. She does have poor lung function in her left lung but her body has compensated amazingly. Her doctors say she won't be a marathon runner, I'm betting she will!
