You should watch her sleep

I just did for a little while. I do on most nights. I have never seen someone or something be at such peace. The settling and comforting sense of calm is in such start contrast to some of her worst moments during the day. We have started to go "swaddle-free," though I do not see this on a list of any developmental milestones. I am sure that Myla has inherited the McLelland-sleep gene. She sleeps because she deserves it, though she doesn't know that she deserves it. She definitely earned her sleep time today. We had two appointments. Our 9am with our cardiologist, Dr. Khan, started off going pretty well when we saw Myla had packed on another 3 ounces in 4 days. We live our days ounce to ounce or as most in the medical profession would prefer us to use gram to to gram. We have slowly crept our way from off of the growth charts to between the 5th and 10th percentile. This would strike fear in most families but it gives us a healthy injection of hope. Unfortunately, Myla had a very difficult morning filled with coughing attacks, retching, and vomiting. Dr. Khan was the 2nd physician who has stated that Myla's coughing fits make her want to cry. Sometimes, when Lindsey and I take Myla to doctors, we feel as though they don't really understand the severity of her cough. It is like bringing your car to the shop and telling them that it makes a noise when you downshift. They take it for a drive and can't get it to reproduce that noise. Myla reproduced that noise today multiple times. Dr. Khan is the one of maybe two physicians that we feel really wants to figure out Myla's cough. She is convinced the cough is not cardiac related; however, we feel she goes the extra mile to help us figure out what the etiology of the cough is.

Dr. Khan told us that she will be presenting Myla's case to a group of CHOP cardiologists and this will help determine if we are going to move forward with Myla's open heart surgery. This could occur sooner than we thought. We will keep you posted about this. I was comforted to know that Myla would most likely only be on the bypass machine for 10-15 minutes. I don't know if its pseudo-prescience or just my obsession with overanalyzing my daughter's medical issues, but it tears me apart to think of leaving her right before the surgery. Maybe my continuous imaginal exposure will make the real thing a little less gut-wrenching...let's hope so.

This afternoon was our 4th specialist that we had seen re: the cough. This time it was the CHOP pulmonologist. Outside of taking a very long time to see us, they seemed thorough and logical in their approach. Let's rule things out so that we can figure this out. Over the next week or so, we will be ruling out some very scary things and some more innocuous things.

Its almost my bedtime, which means I need to learn another lesson from my daughter and let my head rest and be at peace.