due date week

This week flew by. Tuesday we hit a major goal, his oxygen requirement finally got down into the 30s. We haven't seen that number since the week before his PDA closure early September. That's huge. I thought it might be a fluke, but he has continued to at least touch the 30s each day since. The lowest being 33% on Wednesday. The problem is that every evening we have to inch back up into the 50's, which makes every evening feel not so great. But, it's still amazing to see that kind of solid improvement each day.

Last weekend I stumbled upon the fact that there is a unit at Nationwide Hospital in Columbus, OH, that is entirely dedicated to babies with BPD. They claim to have 99% survivability and focus on neuro development just as much as the respiratory side of things. I was shocked, I had no idea that a place like that existed. Monday I asked our provider to reach out to them for a second opinion, I had to know if they would do anything differently for him because it felt like we were kind of stuck again and I still didn't have a clear picture of what their end goal was for him here. We were even willing to transfer there if we found that they could do things there that we aren't able to do here. One of the major draws was that their entire unit is all BPD, meaning the staff there are is totally on board with the goals for that patient population. I've realized that because at Riley the severe BPD babies are spread out over the 60 beds, the nurses may not take care of a patients like him very often or maybe never if they are new. It's all starting to make more sense why it's been difficult to get everyone on board with his sedation goals and how to manage his vent. For a long time I would say that he wasn't breathing comfortably or that he needed sedation and I would get some push back, but it took until last week for it to dawn on me that they weren't buying it that he really needs to breathe under 30 times a minute (babies usually breathe 40-60 times a minute). I knew the importance because in rounds we talked about it a lot, but it was never being conveyed to the staff just how important that aspect of his care is in order to work towards his lungs becoming less hyperinflated. That's the only way. I was hearing "He's a baby, he's going to breathe faster than that" a lot from the staff, and for a long time I felt like that was kind of true too! But after reading about Nationwide's center making their babies breathe even slower than that and our BPD team focusing on it so much last week, I started becoming more aware of how important it was. Once I realized the breakdown and brought it up to the team, they put in the sedation order that if he's breathing faster than 30 breaths per minute for more than 10 minutes he needs sedation or evaluation by a provider. Since then, the nurses have been a lot more attentive to it or at least understand when I bring it to their attention that it really is crucial. Since the care conference I've gotten to speak to our social worker a lot, she's really great. She picked up on the fact that there was a major breakdown and has the same concern that I do- if other babies don't have a parent in the room watching their respiratory rate and advocating, is this always happening and no one has noticed?

Friday afternoon myself, our neonatologists, and our social worker did a zoom call with Nationwide's team to hear what they had to say about Antonio's course. They do use a different ventilator strategy there, but there are two strategies used successfully and Riley uses the one out of those two that they don't use. The doctor there told me that the BPD team here is very good at what they do and they are actually in contact with them a lot. Basically Nationwide's strategy makes the baby breathe comfortably VERY slow and deep. They tend to not have to use much sedation there, which is great. We've continually had to go up on Antonio's sedation the past couple of weeks here. The problem is that now that we're in a spot where he's improving respiratory wise, and the doctor there said they would never recommend us to try to fix something that isn't broke. So basically for now we'll keep the course we're on unless he starts to become stuck again or gets worse. We'll have a new neonatologist on Monday who was also on the call, and the one from last week said she'll have her talk to BPD about what all was discussed and the option of switching him if needed so that we'll all be on the same page if that were to happen. My question for BPD is why when we saw him needing more and more sedation and not improving weeks ago that we didn't just try the other strategy. It seems to me that it could've really helped. But, we can't go back in time to know, so I have to just be glad that we likely at least have a back up plan if this one stops working. I really hate that he's still uncomfortable even with increasing his sedation every day. I've been told by BPD that if he's supported well enough on the vent that he won't need more sedation, but we've been unable to achieve that with the strategy we're using. I also asked Nationwide about their therapy program and from what I gathered they probably have such great neuro outcomes because they don't have uncomfortable, sedated babies, not because the actual therapy is a lot more than what they do at Riley. They focus a lot on parent involvement, which our PT here is great and does that too so I'm not as concerned that he's really missing out on some magic therapy there like I was before the talk. They did confirm that their staff only works on their unit, so they don't have as much trouble getting everyone on board with the "crazy" vent settings. I think that is really key to their outcomes as well. I'm really hoping that I can make a difference in the way BPD babies are cared for here. It's such an abstract disease process that it truly is an art taking care of them! I know at least with Antonio it takes a lot of assessment and understanding about what he's doing on the vent in order to keep him from spiraling. Most nurses don't have much knowledge of the vent because it's not technically their job, but the respiratory therapists aren't in the room all the time to see if he's doing something he shouldn't, so that means that a lot can be missed. Maybe most babies aren't as labor intensive as him, I don't know. The good news is that I don't think it's worth going to Columbus at this point. Also, after the zoom call our neo said that if he keeps improving and staying stable that she could see him being able to trial coming off the vent before he's 5kg. It also seems like everyone is on board with the fact that he's most likely at least going to be eligible to go home on a trach ventilator if we decide we want that. That's a lot more positive than what they were saying in the care conference. I feel much better about our goals for him.

This week was full of important days! Wednesday Fredy had his first birthday as a dad and as an old man, the big 3-0. Thursday we reached 100 days of life for Antonio. And Friday was his expected due date, making him 101 days/3 months 10 days/14 weeks early. That day brought a lot of emotions, happy and sad. We truly should have been going home with our baby this weekend. And even for the first month of our NICU stay most people were telling us that we would probably go home within a few weeks of our due date. Now there is no end in site, and we still have no idea what his outcome will be. But, we have to look at how far he has come regardless. For the first few days we truly didn't know if he would survive another day. For the first couple months he was visiting Jesus on a weekly basis. He's made it through infections, heart surgery, and many many scary days. We're thankful he's still got a chance, and that chance seems to be bigger and better the past couple of weeks. He's been hanging out between 7lb 10oz to 7lb 14oz, and he had grown an inch last Sunday when they measured him. So we're doing pretty good on growth!

Big Ton on his due date wearing his hipster hat 😅