12/5 (Thursday) - A Day of Cuddles

I feel like today was a rather good one :). Terry kicked off the morning by holding Leo. Our new doctor arrived early so Terry was able to meet her and be here for rounds before he headed to work.

They dropped his oxygen to the lowest setting since he did good the previous day.  He maintained it for a few hours, but we had to bump it back up because he eventually started having too many breaths per minute (just working too hard). This was a little disappointing, but at least he is still doing good on the next to last setting. Hopefully tomorrow he will get to try again.

They said he is officially getting his chest tube out tomorrow since he had little drainage today :).  I'm keeping my fingers crossed, but I've heard this before so I'm not getting my hopes up too much.  Hopefully this will make him more comfortable and means the return of the chylothorax was short lived.

Today his doctor officially said he is getting a more permanent type of feeding tube in his belly. Originally I thought this news would have been devastating to us, but I think we are surprisingly at peace with it. I think when they first mentioned it about a week ago we dealt with the bad news then and now we are ready to move forward. From my research, feeding tubes are more common than I thought. A baby basically needs to be eating perfectly to get away with not having one so the fact that Leo is not gagging or sucking properly means he needs one. A nice mom of a little girl who is one of Leo's NICU neighbors let us come over today and see her little girl's G-Tube. It's basically like a little button about the size of a penny on her belly and it looks much more comfortable than the tube hanging out of Leo's nose. Unfortunately, to place a G-tube is another surgery with anesthesia and a ventilator and will take a minimum of a week to recover. The earliest they will do it is the 16th so it looks like we will likely be here for Christmas :(

I feel like Leo's new doctor is more concerned with his overall well being, where his previous doctor was more focused on keeping him alive with his breathing and eating issues (nothing against his old doctor; we really like her and she had him when he was more critical). His new doctor is getting him started on therapy. He is going to have physical therapy 3 times a week to make sure he does not lose any skills from spending his life in a bed and focus on improving "low tone" in his upper torso. This basically stems back to the nerve issues we will hopefully learn more about with the MRI. He is also getting speech therapy....you might be thinking whoa a little early to be worrying about talking. I was surprised to learn that speech therapist help infants who have trouble eating. I worked with her today and she gave us exercises to do at the beginning of his feedings to stimulate the normal root and suck reflexes.

Leo was rather agitated around 3:00 today so they gave him an extra little dose of pain meds. Then the nurse said I should hold him and see if it makes him feel better.  He was still doing his "scruntchy" face that he does when he was mad, but he was overall much calmer and kept his stats good when I held him. It felt really good to be able to hold him when he needed it :).  Leo and I were also both very happy to see two good friends tonight from my work, Julie and Patty. They spoiled us again with a hospital survival kit filled with goodies. The Linke's also spoiled us an edible arrangement. As you can see, Sammie loves it!