6 months

Tony turned 6 months on February 1st, he'll be 3 months adjusted age on February 10th. 6 months in the hospital seems unreal, and was a hard pill to swallow when we realized. Thankfully the next day we had a major turn around. 

Since the last update a lot has happened, until this past Friday not much of it was good. They trialed Tony on the home vent on the Thursday the 25th and he was left on it for 3 days. He wasn't tolerating it by the end of the first night, but we were told he needed to ride it out. The 26th he had moments that he was really struggling, but would wear himself out, so most of the times that he was being assessed he was sleeping and looked fine. They decided not to increase the vent support, but wanted to have a low threshold for increasing over the weekend. It was a PA that was fresh out of school who was supposed to be supervised by an experienced NP who managed him that whole week, I didn't realize that she was on orientation still until this week because I never saw the NP around when decisions were being made. That weekend an NP that had never taken care of him was on. He was struggling even more all day the 27th, which was pointed out, but still his support was not increased until I had the night shift NP come assess him that night and she was willing to increase support. It bandaided the situation, but by Sunday morning he was a complete mess and they finally decided to put him back on the hospital vent. He needed higher settings than he did before the trial, which is what that was supposed to be, a trial. Everyone prefaced that most babies fail the first time so we didn't expect him to last on it, and he should've been switched back when he starting breathing incorrectly. He continued to struggle in the days to come on and off, but not as badly. A chest xray wasn't done until this past Thursday, and it showed that his lungs were expanded down into his abdominal cavity significantly more than they were before the trial. That is caused by him not exhaling all of the way and air trapping. He was doing that a lot because he was breathing way too fast and was inconsolable. 

They tried him in a different vent mode that night and he would alarm constantly for over an hour at a time because he was so upset. Friday morning he was still doing that, so the NP who we really appreciate and is kind of his main NP decided that he needed to go back on the vent mode that helps him breathe the most. They try to avoid it because it takes away Tony's motive to decide how long his breaths are, but it still allows him to trigger breaths. He can't go home on this mode. But, as soon as we switched him over he became a different baby. He slept deeply for a few hours, and when he woke up he was ready to play! That night he latched to his paci and actually sucked on it for the first time. He kept it up for 30 minutes! We cried happy tears. The next 2 days he was reaching for and grabbing toys intentionally for the first time and was able to sit up without his whole body jerking from his work of breathing. He was staying awake for hours at a time without breathing fast. And he pooped without getting drenched in sweat and holding his breath. All of these are firsts, we've waited 6 months for this! 

Today the speech therapist came and saw how well he was doing with his paci, so she gave him milk in a bottle nipple. She told me that he would probably cough or gag and not to get disappointed. He drank it down and cried when she took it away because he wanted more!! Next week we could try a bottle.

He is literally an entirely different baby now that he's being ventilated properly and isn't sedated. The plan is to let him rest and recover in this mode for at least a week, I'm going to push for much longer. He's still on small doses of sedation meds just to keep him from withdrawing, so we will work on getting those off very slowly. We had originally been told we could be home before the end of March, that deadline has been pushed back significantly. We don't really even have an idea. I knew March was very very optimistic. The team has admitted that they were too optimistic about his lungs, and were probably not giving him credit for the 4 weeks he went without amniotic fluid before being born. Finally we are all on the same page. I'm fine with being there as long as it takes now that I'm not watching him suffer every day. We finally have a baby, not just a patient! We had seen glimpses of this life, but it would always be gone within an hour. It's sad to think how many days he could've felt this good if we wouldn't have pushed him so hard the past month.

Praying that we get to continue to help him grow, develop, and get stronger for the weeks to come and that they let him take his time. Now we have a baseline Tony, what he is like when he is breathing comfortably! He's almost 12 and a half pounds now and has steadily grown for the past 3 days. That is also a first in a long time.