Prayers for Jax

When I was 24 weeks pregnant with Jaxson I found out that he would be born with a life threatening severe congenital heart defect, called Hypoplastic Left Heart Syndrome (HLHS). This is a congenital heart defect in which the left side of the heart is severely underdeveloped and essentially has no function. On two or three occasions I was asked if I was sure I did not want to abort the pregnancy, I stood in front of the physician and told them that was not an option for me, My baby deserves every chance I can give him. There was one physician who gave us hope and we left his office feeling confident and ready to get on with my pregnancy. Dr. William Hammill was a Godsend in a time of uncertainty and fear. Jaxson DeArmon Hill was born at 11:06am on Friday April 26, 2013. He was 38 weeks and 3 days gestational age. Jaxson was practically born smiling, he was so tiny and immediately after being born via C-section he was whisked away to the NICU (Neonatal Intensive Care Unit) to be started on prostins which would keep his heart pumping in the way it had while he was in utero. When he was 5 days old he underwent the first of three surgeries to help correct this defect. After the surgery he stayed for one month in the hospital and actually was released to come home on the day he turned 1 month old! He was doing well and thriving, cooing, laughing, giggling and just being a VERY happy baby. In July he started to spike a fever and we rushed him to the emergency room to learn that he had a blood infection and had to start on IV antibiotics which he was on for 6 weeks. During that entire course of antibiotics and throughout his whole life for that matter, Jax never once got upset. He constantly had a smile on his face and a giggle could always be heard. At the end of September we went to the hospital for a cardiac catheterization to find out when his next surgery would be, everything looked pretty good although he seemed close to growing out of a part that was placed in the last surgery. We were sent home and he was doing well, almost a week later at a pediatrician appointment his blood oxygen saturations (SATS) had dropped dangerously low and we had to again take him to the hospital. He was admitted and it was decided that it was time for his second surgery. We had been told that this would be the easiest of the three. He came through the surgery with flying colors, the next morning he was awake and eating, even sitting up and looking around. Later that night disaster struck as complications began to arise, his flow rate on his oxygen had to be increased once again, he was breathing a little heavy, suddenly his heartrate increased to a dangerous level and try as they might his ICU nurses could not get the rhythm under control. Finally his heart started to slow to a dangerous level, when his heart slowed too much they had to start CPR, the nurses and physicians that were there that night did everything in their power to save my sweet angel baby. We were finally told that he was going to be hooked up to a machine called ECMO (ExtraCorporeal Membrane Oxygenation), but in the meantime from the fast heart rhythm they told us he was very sick and may not make it through the night. I began hyperventilating, crying hysterically and just about hit the hard floor. I just kept asking, what they meant, what was wrong with my baby, why was he sick, what had happened? All they could tell me was that it was because of the fast heart rhythm, as to what caused it they said they would try to find out, but would likely never know. After about an hour and a half they came out and said that he was critical,but stable on the ECMO machine. We went in to see him and it was heartbreaking, but without that machine my baby would not have had those extra days and we would not have been able to say goodbye. Those next few days were tumultuous. They kept him hooked up to a continuous video EEG (ElectroEncephaloGram) and monitored brain activity for 48 hours, after 48 hours the only activity that was shown was in the brainstem, that was the activity that was manifesting itself as his breathing and heartbeat. We held out hope and prayed hard, but it was God's will not ours. On Monday October 14, 2013 Jaxson DeArmon Hill flew into the loving arms of Jesus Christ. His Father and I held him while he took his last breath and peacefully slipped away.

These funds will be used to help us with our expenses, the Grave Marker and will also be donated to The Greg Olsen Foundation Receptions for Research: The HEARTest Yard.

Thanks to all of you for your prayers and thoughts during this difficult time and we appreciate EVERYTHING!


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Duane Nix 
Charlotte, NC
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