Posted 2 days ago
Ellis has a note on the side of his isolet that lists the reasons he knows he is special. One of them says "Because my Daddy will miss ESPN Game Day just to be with me". Todd and I left the house during the Auburn/Ole Miss game and other than finding the game on the radio for the drive down Todd didn't seem all that disappointed. I guess Ellis's reasons he's special are right on the money!
Ellis is doing well. He now weighs 3lbs 4oz and has been moved into a double wall isolet. Basically the change in isolet means that he is able to stay warm enough on his own and doesn't need additional heat in his bed. As Ellis has grown and begun to eat more he has also developed what many premies struggle with - acid reflux. It scared me a little in the beginning because his breathing and heart rate would both dip and he would need to be stimulated to get back into a tolerable range. The nurse practitioner explained that all of this could be due to acid reflux, his PDA getting worse, or an infection. Acid reflux I can deal with. Worsening of his PDA or an infectioned sounded scary!
They did another echo of his heart and the cardiologist came by and listened to his heart. He explained to me that his PDA was still moderate to small but had not grown. It wasn't bothering Ellis and wasn't sending additional blood into his lungs, so he did not feel that the PDA was contributing to his drops in breathing and heart rate. Being an interested mother and having a lot of doctor experience I tried to listen well and understand what the cardiologist was saying. I asked a few questions and repeated a few things back. At the end I said, "Wow! I think I understand what you just said to me." to which the cardiologist replied, "Congratulations. You just learned in 15 minutes what took me 14 years of school." LOL! A cardiologist with a sense of humor, who knew!
Infection has also been ruled out for Ellis so right now we are operating under the assumption that he has acid reflux. He has been put back on his high flow cannula which Todd and I were both bummed about but he is still breathing room air and doing relatively well. His feedings have been slowed down (he gets food 24hrs a day!) to help his body digest and ease the reflux symptoms. It feels like a step back but Todd and I have both been assured this is common and should be something he grows out of. Ellis and I had a serious chat about his remembering to breathe while eating to which he sat quietly and did not comment and then proceeded to hold his breath - booger!
All in all we are doing well. I'm healing well from the port placement with minimal soreness. I'm in denial about my PET scan and refuse to call my doctor to find out the results. I will find out when I see him, but as of this moment I don't want to know. I'll cross that bridge when I get there. Right now I'm happy and looking forward to the future and bringing Ellis home. No time to think about sucky cancer.
Specific prayer requests:
- Ellis will continue to grow and learn to breathe through his reflux
- I will continue to heal from my port placement
Ellis is doing well. He now weighs 3lbs 4oz and has been moved into a double wall isolet. Basically the change in isolet means that he is able to stay warm enough on his own and doesn't need additional heat in his bed. As Ellis has grown and begun to eat more he has also developed what many premies struggle with - acid reflux. It scared me a little in the beginning because his breathing and heart rate would both dip and he would need to be stimulated to get back into a tolerable range. The nurse practitioner explained that all of this could be due to acid reflux, his PDA getting worse, or an infection. Acid reflux I can deal with. Worsening of his PDA or an infectioned sounded scary!
They did another echo of his heart and the cardiologist came by and listened to his heart. He explained to me that his PDA was still moderate to small but had not grown. It wasn't bothering Ellis and wasn't sending additional blood into his lungs, so he did not feel that the PDA was contributing to his drops in breathing and heart rate. Being an interested mother and having a lot of doctor experience I tried to listen well and understand what the cardiologist was saying. I asked a few questions and repeated a few things back. At the end I said, "Wow! I think I understand what you just said to me." to which the cardiologist replied, "Congratulations. You just learned in 15 minutes what took me 14 years of school." LOL! A cardiologist with a sense of humor, who knew!
Infection has also been ruled out for Ellis so right now we are operating under the assumption that he has acid reflux. He has been put back on his high flow cannula which Todd and I were both bummed about but he is still breathing room air and doing relatively well. His feedings have been slowed down (he gets food 24hrs a day!) to help his body digest and ease the reflux symptoms. It feels like a step back but Todd and I have both been assured this is common and should be something he grows out of. Ellis and I had a serious chat about his remembering to breathe while eating to which he sat quietly and did not comment and then proceeded to hold his breath - booger!
All in all we are doing well. I'm healing well from the port placement with minimal soreness. I'm in denial about my PET scan and refuse to call my doctor to find out the results. I will find out when I see him, but as of this moment I don't want to know. I'll cross that bridge when I get there. Right now I'm happy and looking forward to the future and bringing Ellis home. No time to think about sucky cancer.
Specific prayer requests:
- Ellis will continue to grow and learn to breathe through his reflux
- I will continue to heal from my port placement
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