The Latest on Antonio

Not a ton of change this week!  Tony has consistently gained weight the past two weeks for the first time, actual weight and not water weight. He hit 6 kg Thursday, that's about 13 lbs 4 oz. He also took his entire bottle for the first time yesterday! He gets 73ml every 3 hours through his g tube. If he takes a bottle, whatever he doesn't drink from the bottle we put the rest through his tube. So this was the first time in his life that he didn't have to use a tube to eat, that's a big deal!  Other than that we increased his trigger trials to 6am to 6pm and he's tolerating that. He was also signed off on by the endocrinologists and the cardiologists. He no longer has adrenal insufficiency, meaning his body should be able to react to normal amounts of stress now without needing steroids. They also no longer have to watch the device that they used to close his PDA, it should be set in with no risk of it migrating. His pulmonary hypertension has resolved (at least for ...

The hiccups this week were few and unimportant mostly. Last weekend Fredy and I finally got away for a little more than 24 hours together. It was planned all week because we knew that there were chronic vent nurses working the days and nights that we needed them to, and everyone was so excited for us. It was really really nice, and very needed. Of course Sunday the nurse who had him Saturday called in, so when I called in to check on Tony it was a brand new nurse who had never had him other than one day on his orientation 2 months ago. There was even a nurse on our "list" in the same hall that wasn't placed in his room, it turned out that the night shift charge never saw the list. Thankfully everything was fine. I'm very glad we left, even with the added stress Sunday. I hope we can do this more in the future.  The nurse manager came and apologized and it was all very productive in the end, so I think it can be even less stressful going forward. We were also supposed ...

The past couple of weeks have been both truly amazing and difficult. Tony seems to be catching up on lost time, which has been thrilling to watch. We basically waited for 7 months to see him progress developmentally in many ways. He's four months corrected age tomorrow, and he's hitting almost all of his milestones based off of that age.  He passed his swallow study last Friday and was cleared to have a bottle for 15 minutes before every feed, meaning whatever he doesn't take in that time will be poured into his feeding bag and we use the g tube. He seems to really enjoy it, even though it's not 100% easy for him, and we have to take lots of little breaks to let him catch his breath. He was doing so well with his latch to the bottle and even his little mouth swabs that I decided to try breastfeeding. To my surprise he latched and nursed for the full 15 minutes! So now we are approved to do either bottle or breastfeeding before each feed. Everyone is shocked and most peo...