December 19, 2016

Louis had his check-up at the cardiologist today. They did an echo-cardiogram (ultrasound of his heart), an EKG, and they did some testing on his pacing device. His cardiologist says everything looks good. His heart function is great, and they would like to start weening him from the blood pressure medications he is on. The electro-physiologist said Louis' device says it has 8 years of battery remaining. Pacemakers are unique because their longevity depends on how much power is used. Louis' pacer could need to be replaced anywhere from 5-8 years. After about 8 years they will want to replace it regardless because he will be so much bigger. I am still half hoping his heart electricity will return. We'll see. 

Louis' feeding has been fantastic. We took the feeding tube out last Saturday because we were only using it to administer medications. I called his ICU doctor to get the 'OK' to take the feeding tube out and when I heard her voice, I cried. I think I miss her? How strange that feeling is. There is so much stress and uncertainty in the PICU, but there is also comfort, knowing you are surrounded by people giving your baby the best care-giving him his best chance.

We have a nurse who comes to the house once a week to weigh Louis and to listen to his heart and lungs. She checks his blood pressure and answers any questions we might have. Louis is 10lbs 7ounces and counting. He is 24 inches long. He is growing (even if it's hardly registering on the national growth chart), he will get there.  Louis also has a physical therapist that comes to the house once a week. Her job is to work with Louis to build muscle strength. Because he was stuck in a hospital bed for so long, he hasn't build neck and shoulder strength. He also cannot rest or lay on his belly since his sternum is still healing. So she teaches us different ways to stretch and strengthen his limbs, neck, and belly.  We has an occupational therapist come, who's usual role is to help with feeding issues, but right away she said Louis has no feeding issues. Then she talked to us about infant massage on Louis' scars, which totally freaks me out. You want me to rub his incisions? Hi, my son had an open chest for a week and a sternum held together with wires and you want me to do what exactly? YIKES But she reassured me that he would let me know if it hurts, and he was a happy little kicker while she gently massaged his scars. He has several; the one major incision which is still scabbed and healing, the pacer incision, three chest tube marks, and a small one from a peritoneal drain. We learned that scar tissue grows like tree roots. Massaging the scar helps to break up the 'roots' of the tissue so it doesn't cause any further issues for Louis' growing body. 

Overall, Louis is doing great. I am struggling a little because we have been down this road before, after his first surgery. Everything looked great and then everything was very scary, puzzling, and as bad as it could get it. So, I am so happy my baby is home and healthy, but I am not able to relax yet. I think that's a trait of all parents, but in particular parents of heart babies. We sure love him something fierce.