Connor James Ferris
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Connor 14 months old
Our son Connor was born on November 3, 2003, at 25 weeks, along with his two sisters Gwynne and Chloe. Our babies were born early due to ruptured membranes (misdiagnosed) at 23 1/2 weeks which then put me into PTL. I was stabilized and given high doses of Magnesium Sulfate and intermittent doses of Terbutiline to stop contractions. Ten days after being admitted I had and infection and went in for an emergency c-section that afternoon. Gwynne was born at 2:51pm at 1lb 9oz, Connor was right behind at 2:51pm at 2lbs, followed by Chloe 2:57pm at 1lb 7oz. It was very grim those first few weeks, all three were intubated and struggling. Connor surprisingly was doing the best out of the three. They all had PDA ligation at 3 weeks old. All three came off the vent shortly after Christmas 2003. It looked like they would be coming home in a few months. During this time Connor and his sisters were diagnosed with various degrees of ROP, Connor being the worst at almost Stage 2 ROP. All ROP issues resolved on there own. Chloe spent 120 days in the NICU, Gwynne almost 200 days, Connor was transferred to PICU in July 2004 and is still currently there, yet due to come home in a couple weeks.
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Connor 1 Day Old
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Connor and his sisters
Chloe was the first to come home and it looked like her sister would be the next to follow, with brother bringing up the rear. Shortly after Chloe came home we noticed Connor was struggling a bit to breath, even though he had been on a high pressure cannula (similar to a CPAP). Our daughter Gwynne also began to struggle. At the end of March/April both were put back on the vent and intubated. We were told to prepare for the worst they had no idea what was wrong with them and that it was out of their hands. They were getting all the support the hospital could give. They finally diagnosed both of them with CMV and Gwynne eventually came off the vent a month later and came home. They could not get Connor weaned off the vent and he went to CHLA in August to get his trach.
In October he coded on the home vent floor and no one to this day knows why. Before this time we suspected some type of neurological damage. After he coded he began to have seizures and went through a CT scan, MRI and EEG. The Dr.'s sat us down and told us that he had atrophy of the brain, very little to no white matter, and they suspected he was blind. They told us to consider removing support as he would never be more then a one month old and would not be able to appreciate the environment around him. We did a lot of thinking and it just didn't feel right removing life support. With in a month we noticed significant changes in him. Since then he had some testing done and it came back his vision is abnormal. We are not sure how much he can see, but his OT has documented there is some type of sight. He is smiling socially and responds to familiar voices. He loves to be held and get kisses and tickles.
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