Sunday, December 6, 2015

December 6 - Dear Nicholas Sparks (Guest Blogger Jessica Jarrett)

Dear Mr. Sparks,

Hayley was born on the Fourth of July 1995. She was diagnosed at 36 weeks gestation when we had an ultrasound to determine position. Incidentally, Hayley was breech and delivered C-Section after my water ruptured at 38 weeks. We were completely prepared for all the possible outcomes by the doctors at the University of Washington Medical Center where I would deliver as well as by Children's Hospital's staff who would care for Hayley once she was stabilized and transported. We were lucky to tour both facilities and had time to ask lots of questions. I am happy we did not have more than these two weeks for preparation because the waiting and wondering once we had a diagnosis was very difficult.

The night Hayley was born was as smooth as we could have hoped. The whole team of all her doctors were assembled and the actual C-Section was uneventful. Hayley of course was whisked away immediately to be intubated and stabilized. She was not able to breathe on her own at birth. My husband, Andy, was able to see Hayley about an hour after her birth. About three hours after her birth they brought Hayley to me in recovery room all ready for transport. I could touch only her fingers through the portable incubator. The next 24 hours were the hardest. I was in one hospital and Hayley another. Hayley was fairly stable through the night but started failing the next day. The team tried switching Hayley from a ventilator to a high velocity oscillator. When that did not help, they tried nitrous oxide gas to attempt to relax the hypertension in Hayley's lungs and improve her oxygen levels. Finally when Hayley was 24 hours old it was decided to put her on ECMO to save her life. Hayley had a smooth 17 day ECMO run. Her hernia was repaired while on ECMO on the 12th day. Following ECMO Hayley required about 10 more days of ventilation and about 3 weeks of nasal c-pap. Since that time Hayley has needed small amounts of oxygen (.2-.5 lpm) and occasional nebulizer treatments to breath comfortably. When we left the Infant Intensive Care Unit when Hayley was 8 weeks old she was stable in a respiratory sense but had several feeding battles to overcome before coming home at 7 months.

Hayley had gastric emptying problems and severe reflux. She required 5 different surgeries to correct her gastric problems and to begin oral feeds. This included surgery to correct her malrotated stomach, straighten her contorted duodenum, a pyloromyotomy to help gastric emptying, and a Nissen fundoplication to stop the reflux. As you can imagine after all of this Hayley was very orally aversive and developmentally delayed.

Today, we are proud to say Hayley is making incredible progress. She requires a small amount of oxygen (about .2 lpm) which she hardly seems to notice. Hayley is playing with both hands in all the ways expected for a child her age i.e., throwing things off the high chair, opening kitchen cabinets, playing "So Big". She is also pulling to stand, bouncing and traveling in her walker. Eating continues to be the most challenging area for Hayley and I. She takes about 1 tsp. of baby food a couple of times a day by mouth with lots of encouragement!! She also enjoys a pacifier. Otherwise, Hayley is getting her nutrition via a gastrostomy tube (about 8 oz 4 times a day). We are grateful for every small step. Hayley loves to look at books, to pet her dog Issabo, and to watch Barney! She hardly ever cries (unless eating) and loves people. We feel very blessed to have our little girl with us.

Written by Hayley's mom, Jessica Jarrett (Virginia)

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