The Latest on Antonio

Sorry in advance for how lengthy this is, it's been a long week. Feel free to skip to the positives if you want to skip all the sad parts. I wish that I could say that closing Tonio's PDA fixed all of his problems, but unfortunately it did not. It's been very hard to keep a clear head on all of this since hearing that he needed it closed because some of the staff would tell us that it was going to help him drastically and others would tell us not to expect to see any kind of improvement on the outside. We had never even heard that he would need it closed prior to a couple of weeks ago, but after that decision was made it seemed like all of a sudden most of his problems were blamed on the PDA. He's being drifty with his oxygen, PDA. He's swollen more, PDA. His heart rate is lower, PDA. That was really frustrating because then we couldn't help but hope that if all of that was true that it would be better after. Deep down I knew that wasn't totally true, I knew...

Well, Toni did finally get his PDA closed this morning. We are so thankful to have it done and that he did well. His PDA was larger than the echo imaging had shown, but they were able to close it successfully. Since then he has been stable, but requiring more oxygen. He went in on 53% and is now at 70% and having trouble staying above 90% saturation. They told us before that he could have more issues post-op for a couple of days than he was prior to surgery, but I still hate to see it! We'll try to be patient and see how he does. Toni also had his second 5 minutes of fame today. The first came when the CEO of the hospital and other higher ups asked one of our neonatologists if they could come see a "small baby." She told them that he would be a good one, this was back when he was 5 weeks old. Today WRTV Channel 6 News was following a radiology tech around because she was a Riley kid so he got to be filmed while they took his xray! So I'll be on the lookout for how to ...

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 th...

After moving over to SFT, Antonio had a rough start. His breathing tube was poorly taped to start with, almost completely covering his nose and right up next to his eye. They cut it when we got here to try to make it more comfortable for him, but that just caused it to be unstable. By Saturday morning his tube was basically hanging on by a thread, which was completely unacceptable. I started to give him his little sponge bath and he turned his head, almost pulling it out. I grabbed it and held it in until I could get the nurse to hold it for them to look at. He was retaped, but after that he didn't do the same as he had before. We had to go up on his oxygen over and over, he had an enormous leak around it, and it was basically decided that he needed a new tube after they finally realized it wasn't his lungs worsening, but that we should wait until his procedure on Tuesday to do that when he would already be under anesthesia. They literally used the term "limp along." ...

 A lot has happened the past week, per usual. They finally felt comfortable taking the breathing tube out on Friday last week, and everyone seemed to feel really great about his chances of staying off the vent this time. Unfortunately, as soon as they started to take the tape off of his face his oxygen and heart rate dropped. I think it would have been best to wait and let him calm down, and the nursing staff agrees. Next time I'll be sure that happens. But the tube was taken out and they put the CPAP mask on his face. It was basically chaos from that point on. He was completely worked up and his oxygen just kept dropping. They positioned him probably 5 different ways trying to help, but it just made it worse. Tried different masks and nasal prongs. Nothing was helping. He was extubated for almost 2 hours before they put the tube back. He fought so hard, but his oxygen was just sitting around 65% for a long time. His heart rate was dangerously low. And even when they put the tube b...

  We had an eventful weekend to say the least. Friday night Antonio needed increased oxygen consistently, which they eventually found was due to his left lung collapsing again. It sounds scarier than it really is, they use positioning and sometimes make vent changes to open it up again. So that was the plan Saturday, and it appeared to be working on his follow up chest x-ray. Everyone agreed that he was doing well all things considered, so they were okay with us doing skin to skin time. When he is on the jet ventilator it takes 2 respiratory therapists and a nurse to make sure nothing gets pulled while we get him out, especially his breathing tube. There are only a handful of days that they haven't encouraged us to hold him. A few times we've felt uncomfortable getting him out due to his condition at the time, but we know that he needs it so we get him out anyway. Most of the time it's okay, he needs a lot of attention, but he tolerates it if he is suctioned often. Usually ...