Everything except the lungs!

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 people have never seen a trach baby, especially on the vent, that is able to breastfeed. I am so thankful, these are such sweet moments after waiting for so long with no idea if he would even be interested or allowed to take anything by mouth. Even the trip to the swallow study was fun, it was all the way in the outpatient part of Riley, so he got to see more of the world than he's ever seen before! On the way back he got to ride in his little chair on top of the bed so then he really got a different view and also a lot of "awww!" from everyone we passed. 

He's also been constantly putting his hands together and in his mouth, which is great and really cute. Yesterday he finally figured out he could suck his thumb, meaning we hopefully won't have to constantly hold the paci when he's upset! He's able to grab toys and bring them to his mouth too. Next we're working on holding toys with both hands, rolling, and tummy time. 

The difficult part is that with all of this improvement there is still not any sign of improvement with his lungs. We have been doing "trigger trials," meaning for a set amount of time during the day twice a day they turn down the sensitivity on the vent, making him work harder to trigger breaths. There is no scientific evidence for these trials, it's really just something they started doing when a couple of the other babies in the last year were having issues triggering and it seemed to help. They agreed when I asked if maybe it really just was the time and growth that helped, not the trials, but no one can know. They have slowly increased the intervals of time each day, and yesterday a NP that always wants to push him decided that we should double the times from 3 hours in morning and evening to 6 hours each. By 1 hour into the second interval he was struggling greatly. It's really frustrating because I hate seeing him like that, especially when there is no proof that it is even helping. I had told her I didn't think he would do well, but she said she thought he would be fine. Thankfully we stopped the trial and after an hour he was back to being okay. He struggled with his trial this morning because he got worked up, but they were able to restart it a little while later and he has done well. We're only doing one 6 hour interval today. I don't think we will be trying the home vent again any time soon, not until we see improvement in his ability to trigger.

It was also difficult because last week one of the attending physicians made a joke that hopefully we would be home by next Easter, and when I questioned him further he said that he would be happy if we were home by Christmas. I was shocked, our goal has been August 1st since seeing how he's not improving quickly, and everyone else has been saying that they would hope that there's no way that it would take any longer than that. The NP that takes care of him most of the time still stands by that and thinks that Christmas is extreme, but the truth is that no one can tell us because no one can know. The attending physician said that he hopes he is wrong, and that Tony's airways will get wider and less floppy, meaning that they don't collapse on themselves, much sooner than that. It was a wake up call that I probably needed, but it hurt a lot, and it puts a damper on all of the great things he is doing because he can do all of those things, but that doesn't get him home. We are going to try to stay positive though, and make the best of it. It could be much worse. We are bringing things in to help us do everything as comfortably as possible with him, to make it as much like home as we can. And I'm hanging on to the fact that our favorite neonatologist told me that studies show that longer hospital stays actually equate to better long term outcomes, not worse. We're going to just keep doing our best with what we've got. 

Thankfully we know a lot of the staff now, though we still meet new nurses often. I spoke to the nursing manager for over an hour last week and that was very productive. She took my concerns really seriously and didn't disagree with any of them. She told me we can make a "team" of nurses too, so that should help with consistency a lot. I hope that we can at least make a difference for future families if we have to spend so much time here anyway!

Praying for stamina for us to keep going at 100% every day that we are there, patience with Tony, the staff, and each other, and that he would keep inspiring us with all of his new accomplishments.