Thursday, June 23, 2011

What a whirlwind

So. Here we are. I wonder why it is this blog only ever sees attention when I have difficult things to post? We came here Sunday night from Connecticut (after visiting parents on both sides) to participate in a sleep study. We wanted to see if Aurelia had sleep apnea. The test revealed severe apnea, to the point of her oxygen saturation dropping thirty to forty points into the 50s. The results astounded us, making me question my ability to care for Aurelia at home; how could I have overlooked something this dangerous? We gave her oxygen, measured her saturation rates and even monitored her O2 levels daily, so how did we miss sleep apnea this bad?

Little did we know, but babies with terrible apnea often learn to position their bodies optimally for improved breathing. Aurelia's preferred sleeping position was on her side, 3/4 turned, back arched, head back. She subconsciously moved her tongue forward in her palette and minimized the impact of enlarged adenoids every night. During the sleep test, wrapped as she was and forced to lay flat on her back, she sounded like a freight train rumbling on decrepit tracks, squealing under heavy load.

Since 3:00 a.m. that morning we've been reacting to constantly changing circumstances, expectations, assistance, and fears. Monday came and went without any surgery and only the beginnings of a plan to treat Aurelia and Tuesday brought more frustration as plastics, ENT, and cardiology attempted to develop a care plan for our little girl. We did our best as a family to stick together though we all felt completely helpless and unable to control any part of the situation. Jillian and I tried to get organized for what could be a multi-week stay at CHOP, and Madison persevered valiantly, trying to have fun and understand why her sister was so sick and we couldn't go home to see our cats, Ulysses and Shiloh.

Frantically, we canceled therapy and doctor's appointments for this week, made arrangements for friends to care for our cats, secured lodging at the Ronald McDonald House, and convinced Jillian's parents to come down for a few days during and after Aurelia's surgery. We completed these tasks amid ever changing plans for Aurelia. Doctors informed us that Aurelia's care could require weeks at the hospital, that we'd be having one surgery, or two surgeries, maybe repairing her cleft palette, maybe not, maybe looking at a tracheotomy, maybe removing her tonsils, maybe doing nothing, maybe moving her jaw. What registered clearly for us was that until these breathing treatments were resolved, Aurelia would not have her next heart surgery in July.

We trust the care teams at CHOP with our daughter's life, so really we knew that our preparations had to be for the most severe scenario - a two to three week recovery from multiple surgeries leading straight into her next open heart surgery in mid-July, with us getting home sometime right around the beginning of August. I cried, cursing how a stupid sleep test could turn into more than a month away from home. I fumed, infuriated that my family was thrown into tumult with little I could do to restore balance and order.

To make Aurelia's (and Jillian's) time in the cardiac intensive care unit somewhat easier - remember that these rooms are four pods a piece, with limited family members allowed bedside by each patient, I left Philadelphia with Madison Tuesday. To her credit, Madison rallied her spirits here wonderfully, but she is just a bit too loud for promoting appropriate care in an intensive care unit. At home I could both occupy Madison and take care of some loose ends at the house. Jillian remained with Aurelia, focusing her care entirely on our little one as surgery approached.

We went into surgery this morning with a plan in place. Aurelia would have tubes inserted into her ears, her throat and bronchial tubes scoped, her vocal chord paresis examined, her enlarged adenoids trimmed down, and her mandible advanced. The surgery would involve both ENT and Plastics, and last for several hours. Aurelia has come through that surgery wonderfully and now recovers. In future posts, I will talk more about the procedures and some of the people working on Aurelia during this most recent stay here at CHOP.


  1. As I read this, I can't help but think of how strong you guys must be to be able to endure all of this. I know how I am with my girls - they sneeze and I worry all day. I commend your strength and your seemingly endless determination.

    Our thoughts and prayers for Aurelia and your family.

  2. Thinking of you guys, Charley. You guys are so strong and your little one is such a trooper!

  3. I wouldn't worry too much about "over-looking" Aurelia's sleep apnea. With everything she has gone through, you couldn't possible be thinking that one more thing might be wrong. And while she's sleeping, you're not focused on her every second she's making zzzzzzzzzzzzz.

    Here's to Aurelia for being the toughest little girl anyone knows. I have great admiration for her. She doesn't know any different today, but some day she'll have a clean bill of health thanks to the miracle of modern medicine, and will spend each day doing every day things like her peers.

    G'burg love!