Easley, Alexander

[left:ba0a4b1884]http://www.cdhsupport.org/graphics/Easley-Alex.jpg[/left:ba0a4b1884]It all began when we found out that we were pregnant with our second child. We already had a 3-year-old son named Walker so we were ecstatic to be pregnant again. It was a normal pregnancy until the end of July 2006. I felt funny that day at work so I went to the ER that evening and sure enough I had been having contractions every 1-2 minutes apart. The doctor told me I had over done it, put me on medication to stop the labor and sent me home on bed rest. Over the next 2 weeks I had been in and out of the doctors office with continuing contractions. Finally, they did a third ultrasound, but did not know what they were seeing so I was scheduled for a level two ultrasound the following week. I went that day in August by myself thinking that it would be nothing and sent my husband to work. I laid on the table for over an hour while the technician looked, but said nothing. Finally the high risk OB came in and began to look at the ultrasound. Dr. Clark began to explain to me that the baby had a Right Sided Congenital Diaphragmatic Hernia and that the intestines were up in the chest compressing the right lung. My husband immediately came to the doctor’s office and Dr. Clark went into detail about how large the hole was and that Alex would more than likely require ECMO. Dr. Clark then put in a phone call to Vanderbilt Children’s Hospital since they were the closest to specialize in CDH and ECMO. The next day my husband and I were in Nashville at Vanderbilt meeting with the Neonatologist and Pediatric Surgeon.

Vanderbilt had arranged for our entire family to move to Nashville (5 hours from home) one week before my scheduled induction date. Alex had another plan. Two weeks prior to the induction date I began to have more regular contractions and went to the ER again. After I was assessed it was determined that I need to be flown to Vanderbilt immediately. So the Vanderbilt Children’s Hospital airplane came to the tricities, picked me up and flew me to Vanderbilt. They were able to get the labor to stop and I was discharged, but told that I could not leave the Nashville area. My husband, our 3 year old and my mother-in-law joined me the next day and we all lived in Nashville for the next two weeks.

The induction began about 11:00 am on September 28, 06. Everyone was ready for Alex to make his entrance. We had 2 residents, 1 attending, 2 delivery nurses, pediatric surgeon and the entire NICU team waiting and ready. At 4:14 pm Alex decided to grace us with his presence and let out 2 little cries before he was rushed to the side to be stabilized. Once he was intubated the NICU team rolled him by so I could get a quick glimpse before he was rushed to Children’s. About one hour later we received a phone call from Alex's surgeon Dr. Yang informing us that Alex would require ECMO and they were going to begin the procedure. Two hours after that Dr. Yang called back to let us know he was okay and they would begin the diaphragm repair. Alex was a right-sided CDH with liver and intestines up and not sure if he had any right lung tissue. Once the procedure was complete Dr. Yang informed us that Alex did have a right lung, but it was very small. Alex spent the next 9 days on ECMO and was finally extubated from the ventilator at 3 weeks old. I so enjoyed getting that first hold that I had been longing for. During the weaning from the vent Alex spent some time on Nitric Oxide due to his pulmonary hypertension. He was then weaned from NO to CPAP and then to oxygen through a nasal cannula. Alex had been at Vanderbilt until December 12, 2006. During this time I would travel the 5 hours every weekend to be with him while my husband stayed with our other son. Once Alex was transferred to Johnson City he began to have these episodes of respiratory distress every day. These delayed us from being able to come home any time soon. So once again we were living in the hospital. After 8 months, many intubations for respiratory distress and many infections later Alex was able to come home. Alex was home for 1 month when the episodes started back up. He was readmitted to the hospital and finally transferred back to Vanderbilt. It was then determined that along with the pulmonary hypertension Alex had tracheomalacia. That is when it was decided that he needed a trach and ventilator. Being on the home vent and having a secure airway is really what has made the difference for Alex. His breathing slowed down incredibly and he was finally able to start gaining weight. Alex came home on August 2, 2007 and has only had a few overnight visits back to the hospital. He still gets medication for the pulmonary hypertension and he still has the trach and vent, but is now able to really develop and act like a toddler (just with all the medical equipment). My husband and I are so proud of the progress that Alex has made and how strong he is. Alex never ceases to amaze us every day. We also give so much love and appreciation to all of Alex's doctors and caregivers especially Dr. Yang for giving Alex a chance at life. Thank you to everyone for taking the time to read our story.

Written in 2008 by Alex’s mom, Donna Easley (TN, USA)