Eleven days has felt like an eternity, complete with with a full range of emotions, yet is a blink in time to most of us; leave it to Ren to put time in perspective. Today we were able to pull Ren’s breathing tube despite our trepidation and are so happy to report that our little warrior responded beautifully. At 3:00pm he was extubated and fitted with an oral mouthpiece to ensure that his airway remain open and clear. To everyone’s surprise, Ren immediately began suckling on the mouthpiece as if it were a pacifier!! Because of the connection between sucking and swallowing, this is an enermous victory! We watched and listened to the sweet sounds of him sucking as our anxiety waned, waiting to hear him realize that he could once again talk to us. After days of a breathing tube interfering with his ability to cry, it was slow going and strained, but eventually gave way to Ren’s fighting spirit and determination. For a parent that has relied on nurses and respiratory therapists just to get your baby out of bed and onto your chest, elevated heart rates and emotional connection to alert you of discomfort, and the look in the eyes of your child to know that they are ok, even the tiniest of cries is a cherished addition to our means of communication. Because of the strain this event put on Ren, we opted to let him remain in his bed despite our selfish urges to pick him up and hold him now that he is finally free from tubes. This “sucky” situation was short lived because Ren decided to figure out how to turn his mouthpiece and spit it out until it was decided to let him rest without it.

Afer the initial administration of his first to doses of meds that are intended to reduce his oral secretions, his doses have been moved to every 6 hours instead of every 12 because of his positive response. Being the inquisitive people we are, after 2 of my questions were unable to be answered by the nurses and RTs (respiratory therapists) I requested to talk to the neonatologist for some insight. After confirming my suspicions, the doctor continued to explain that he t00 was seeing improvement in areas that we had previously reported≥ According to the doctor, Ren’s muscle tone is improving each day. The attending neonatologist was also the same neo present when Ren was born and gave such a grim report initially.

“His muscle tone has improved, even over the last two days. He is trying to hold on to my fingers when I offer them to him,” he told me. “I’m not sure what we are seeing, but whatever it is, it is good,” he added.

When statistics and immediate observations are stacked against you, sometimes hope and unwillingness to accept the medical opinion are the only thing you have on your side. We have always been acutely aware of the severity of Ren’s situation, but we have also always believed that there is more to this story than meets the eye. We have much more to report regarding plans for a transfer to Dell Children’s Hospital, but tonight we will all rest and take this triumph as a big step towards Ren’s plans to teach us all something about faith and strength.