Positives

This morning was filled with negatives, so I thought I'd add some positives. We got the tube switched out and he has been a lot more stable ever since. I finally feel a little more "heard" by everyone now that it became more clear that I wasn't making it up that his tube being placed too high on Saturday was the main reason that he was having so many issues. 

The neonatologist on this week has been the first person to bring up his little malformed right ear to us. She consulted a geneticist to come speak with us this afternoon so we should be hearing next week if there is any genetic tie to it or if it's just prematurity. They'll also talk about consulting plastic surgery after that. 

He's also weighing in at 4 lb 15oz tonight, which is actually 100G less than last night, but I knew his last couple gains were most likely fluid from the blood he got. But I think we're safe to say that he's over 4.5lb at this point! 

We're feeling more hopeful than we were this morning, this morning was rough. So much build up and preparation for the rug to be pulled out from under us 30 minutes after they were already supposed to be picking him up. This experience has just continued to force us to handle more than I would have ever thought was possible. We have to continue to trust that it will be okay, no matter the outcome of all of this. The hardest part is that we can't just sit back and wait completely, we have to continue to advocate for him, which causes more anxiety than anything. When something is missed I not only have mom guilt, but nurse guilt as well, even if I attempted to point it out. 

Thank you all for building us up in prayer and in your words of truth and encouragement. It's crazy that no matter how much you know the truth, in these moments of desperation there can be a fog distorting it, and that can become very dark. God is still good and His Will will be done in the end, we just pray that we would see it as clearly as we can. 

Getting to hold him "normally" for the first time!




He loves to hold his little ear, Fredy thinks it's a self induced in-utero injury!
All wrapped up ready for surgery 😭
Hiccups!




Comments

Post a Comment

Popular posts from this blog

no more struggle

Image
I really hate that I have to write this update tonight.  Yesterday morning around 6:20am we got a call from the PICU, Tony was coding. We physically ran to the hospital. By the time we got there he had been coding for probably 10 minutes. They told us he got upset, probably trying to poop, and his oxygen saturation dropped. Then his heart rate went with it. They tried to use the ambu bag to give him breaths instead of the vent and couldn't get his airways to open back up. After probably 30 minutes of chest compressions they decided to try to put him on ECMO. That's a machine that basically does the work of the heart and lungs for a time. At first we said okay, but after seeing how long it was taking to get started, knowing that he had been without much oxygen to his brain for more than 30 minutes, I started telling them that I didn't think we should proceed. They agreed that there was almost no chance that his brain was being perfused most of the time they had been doing CP
Read more

PICU boy

Image
What a week. After Antonio's first trach change we spent the weekend getting him up in his little chair, holding him, and trying to do some tummy time. He was still very sedated, so he slept through most of it, but it was good for him and fun for us! We even saw Santa on Tuesday! He was having some issues with breathing hard when he would wake up, so we tweaked his vent settings back up. They had made some adjustments last Thursday and Friday because he was doing too good on his blood gasses, probably because he was super sedated. So all week they worked on weaning him down and messing with the vent. Tuesday morning we heard from a pulmonologist that she suspected that we would move to PICU within 24-48 hours. Everyone else said no beds were available. Wednesday we heard we were moving, then nevermind we aren't, then wait yes you are, and finally about 6pm they said we weren't. So we had packed everything up, only to have to dig some of it out to take care of him yesterday.
Read more

due date week

Image
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 f
Read more