Super Tonito

 I'm going to do a bullet point update this time around, as there isn't as much to explain thankfully! 

  • Tony got his VCUG (test to see if he has reflux of urine into his kidneys) last week after they saw swelling in both of his kidneys on ultrasound the week before, which required a prophylactic antibiotic on top of the antibiotic he was on for his SIBO (small intestinal bacterial overgrowth). I really didn't want him to have to take those and tried to run interference but the urologist was very unconvinced that it would be an issue. The combination of antibiotics caused him to have at least 3 bad days due to his belly hurting so bad, and it basically cancelled out the treatment for the SIBO for that time. He ended up having breathing issues because of it, which scared us because if he can't handle these vent settings the next step is re-sedating him. That is unimaginable at this point. Thankfully the VCUG showed no reflux and he ended the SIBO antibiotics this Monday. We're hoping that his belly issues will stay resolved now that he's off all narcotics and has been since the 11th. He's down to one dose of ativan per day and clonidine every 8 hours, which doesn't really do much anyway. 
  •  The rest of the last 2 weeks were a lot of "no changes," which was great. We probably had 2 hard days out of the last 7, and those days Tony wasn't breathing bad necessarily, it was more circumstantial from trying to get labs and things. 
  • He took 2mls of milk by mouth Monday-Wednesday, then 5mls Thursday, then 10mls Friday! Today he's going to try with a real bottle. We truly never thought we would see that day! I figured we would have to just go straight to purees, and that was kind of the general attitude, so it's really amazing. He loves his paci, which has made ours lives SO much easier in terms of soothing him. 
  • I got a patient advocate involved, one of the chaplains that stops by to check in often recommended that I do so after hearing what all has happened recently with the home vent trial. I'm not sure how much it will help now that we are all finally on the same page of taking things slow with him, but it's good to have on record so that if anything else happens I can say that I already made contact with them and that everyone should know the plan. I also talked to multiple people to make sure that there isn't something else that could be done somewhere else. I feel pretty confident that there isn't anything at this point that can be done. There is technology out there that I learned of through my own research that maybe could have helped him when he was probably 2 months old or less, but they don't have the capability for it at Riley yet. It's frustrating, and I'll never know how much of a difference it would have made if I asked for multiple second opinions back then. All we can do is be patient and give his lungs time to heal. 
  • They are going to come up with a plan this week for what to do with the vent when we do decide it's time to start working towards the home vent again. He's still not even breathing well 100% of the time on these settings, so I am hoping that we can give him a little more time. It has been so nice to have him acting like a baby who isn't suffering for multiple days in a row. We haven't even had to move his mood chart off "Super Tonito" most days!
  • Praying for continued patience and contentment with our situation. And for the other babies and their families around us. We are reminded often when we hear of stories that didn't end with parents taking their NICU babies home that we are blessed to have these moments with Tony. Thank you for the prayers! 


Playing cowboy on his boppy! >
This is a game that Tony somehow figured out how to play with us. He will take his paci and then whip his head the opposition direction over and over. He's initiated it multiple times, it's wild! >
We moved rooms again this week, and I got to actually walk him to our new room. It was our first walk! >

Taking milk while sitting in his new frog seat! >
I only took this because it's crazy how great it is to see him be able to "cry" like a normal baby. He used to only "cry" when he couldn't poop and it was a full on not breathing "cry." Now he does this throughout the day and it's so awesome because he's just communicating to me that he needs something. Also he makes the cutest pouty mouth ever! >


Eating his fingers! >

Working out those legs >

We figured out that I looked a lot like Tony as a baby, so neat (: 

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