First 2012 Update
God has been so good to us! For the most part, baby Paul has been doing really well. The main issue has been his rate of breathing. His chest tube did fix the effusion in his lungs and was pulled the next day. He has still been breathing about 80 breaths per minute for most of his little life. This is somewhat typical for post Norwood babies, though it can be fairly scary to watch. His oxygen saturations are higher than we would like them to be (high 90’s), which means he is working hard to get blood flow into his body. The faster he breathes and the harder he works, the faster his heart rate. His heart rate tends to be in the range of 140-170 bpm. The faster his heart rate, the more calories he burns and he begins to lose weight. He is now on 30 calorie formula through his feeding tube to see if we can not begin to put some weight on. The larger he is, the better- particularly as we prepare for his second surgery this spring.
So, the name of the game right now is to balance rate of breathing, heart rate, fluids, and caloric intake to get us through the next few months. We pray that Paul starts to grow but we are continually thankful for everything that is going so well for him medically. His vocal chords sound good, he is doing really well developmentally both physically and mentally, and his murmur sounds good which indicates that his shunt is doing it’s job.
Paul is enjoying physical and occupational therapy (see photo below) and got to wear clothes for the first time last week! He love listening to music, playing with his mobile, visiting with new and old friends, being held, and looking around. We are so humbled by all of your love and support and can not tell you how much the food and companionship especially have meant to us. Thank you for staying updated on our little warrior. We wish you peace and blessings in the new year.