Wednesday, January 14

Tuesday night we were able to get some more sleep which was good. We're starting to get into a better routine now. Wednesday morning I came over to the hospital and went in to see Caden. He was doing well and I sat with him for a few minutes. While I was there, the neonatal nurse practitioner came to chat with me briefly. She said that the cardiac team had met early that morning to discuss all the patients and surgery schedule. She asked if we had “been consented” yet, meaning if we had signed a consent form yet. I told her we hadn't. She said that the surgeons were certainly aware of Caden and would be doing surgery as soon as they were able to, depending on bed space in CVICU. Pretty much the same thing we had been told all along.

She has also been talking to us about giving Caden a shot to help prevent RSV. She gave us some information regarding the shot and it's risks, etc. But, she said that since we're in the midst of RSV season, the doctors here were HIGHLY recommending Caden receive it. They said the most critical time for him will be following coarc surgery when he is most susceptible for infections. We haven't given our consent yet, but are still looking at the information.

My mom arrived with Kyler mid-morning and we took him in to see Caden at that time. He had brought a present to give to Caden and we had him do that. It was kind of hard because he didn't want to give it up and didn't really have a place to put it even if he had. But he was more willing to look at Caden this time around than before. However, when Greg was holding him and either Greg or I would touch Caden, Kyler would reach over and take our hands off him. So, he was okay with us looking at Caden, but he really didn't want us touching him. It's got to be a hard thing for him to adjust to.

Right after the visit with Kyler and Caden, Greg and I met with Emily, our social worker. She had arranged to take us on a tour of CVICU so we would know what to expect when Caden transfers there after surgery. Before we could even leave NICU, the attending neonatologist walked by us and saw us sitting in the waiting area and came and sat down with us. He asked us how things were going and if there was anything he could help us with, or if we had any questions for him. (He is such a nice guy, Emily calls him a teddy bear.) The one thing we have wondered about is whether or not they would be able to do the coarc and the diaphragm repair at the same time if they have to go in through the chest. We know that if they go in through the ribs on the left side to do the coarc, there would definitely be two surgeries. But, if they go in through the chest, there might be a possibility of just one surgery. So, we were asking the attending neonatologist the question to see if he knew. He said he didn't know the answer to that, but he would head over to CVICU to find someone to ask the question. Emily told him we were there headed as well, so the four of us walked that way. En route, we passed another doctor whom the neonatologist stopped. Apparently it was a pediatric surgeon and he asked him about the possibility of doing them at the same time. He said he wasn't familiar with our case and he wasn't sure. But it would probably depend on what Dr. Reddy thought about it. About that same time, another doctor came around the corner, this time a cardiologist. So, the neonatologist asked him the question as well. This cardiologist had been part of the meeting Wednesday morning in which Caden's case was discussed and he said it was brought up as a possibility of doing the two repairs at the same time, so it was certainly on the table. Not to say that it would definitely take place that way, but it wasn't out of the question. The nice thing about that option is it would mean less time under general anesthesia for Caden and that is good. But we probably won't know about that until they're ready for surgery.

As soon as we were done talking to those doctors in the hallway, we headed into CVICU and looked around. It was really helpful for us to see the unit where Caden would go following surgery. It makes it a little easier knowing that. There are only 11 beds available so it's easy to see how things can get backed up.

After our tour with Emily, we headed back to RMH to see Kyler. Greg took him to the park and I took a short nap. That afternoon, my mom, Cheryl and I came back to the hospital to spend more time with Caden. My mom was anxious to see him as she hadn't gotten to see him in a few days. We spent quite awhile by his bed talking to him and touching him but we didn't try to hold him at that time. Then Cheryl went back to RMH to watch Kyler so Greg could come over to the hospital. The nurse had announced that the doctors had ordered Caden to be “fed” every 6 hours with ½ ml of milk. It's not much, but at least he's getting the nutrients and the immunities of the colostrum and we were really happy about that. I gave about half of the amount to Caden and waited for Greg to get there to do the other half. It was nice to be able to do that.

After dinner, we spent a few more minutes with Kyler before my mom and Cheryl drove him back to Sacramento. Wednesday was the first night we were on our own since Caden was born. Right about the time we were headed back to RMH to see Kyler, our pastors, Walt & Greg, arrived to do the anointing for Caden. They grabbed a bite to eat while we visited with Kyler and waited for the nursing shift change to finish. Then, around 7:45, we got together and had our anointing service. It was very emotional for both me and Greg especially. We asked the Lord for a complete healing of all Caden's health issues. We don't know what will happen, but it is in God's hands and we are trusting in him to provide for us whatever the outcome.

After the anointing, Greg and I spent more time with Caden and held him for a little while. It was really nice because right after I started holding him, he opened his eyes and was looking around. It was so sweet and we savored every moment. Greg took several pictures. It's been so hard to see him so unresponsive and never opening his eyes, especially after Saturday when he was so much more alert. Then, at 10:00 we were able to give him another “feeding” of milk. He did okay with it and we are so happy he gets to have it.

Right about this time, the cardiologist we had spoken with on Monday night came by and asked if we had any questions. We told him yes (any time we can get ahold of a a doctor, we ask as many questions as possible). He had been at the meeting Wednesday morning with all the cardiologists and knew what they had discussed about Caden. He thought we had already been updated on the outcome but we hadn't. So, he said that Dr. Reddy had decided he would definitely do the coarc repair from the chest not the side. This was mostly because if he goes in from the side, he has to collapse the left lung in order to get to the heart and he felt that with the eventration, this would not be the best route to go. And, his plan at this point is to do the eventration repair at the same time as the coarc. However, he could change his mind once he gets in to do the surgery, it just depends on what he sees with the eventration at the time of surgery. We thought this was great news because it would mean less time under general anesthesia which is good. And, only one recovery time instead of two.

We also asked the cardiologist about length of recovery and the process in general. He said he would expect Caden to go from the operating room to CVICU and be there a minimum of 24-48 hours on a ventilator. Then, he would probably return to NICU at that point for the rest of his recovery. And, he was guessing that it would probably be within a week that Caden would be able to go home. However, this is all subject to change depending on a million unforseen circumstances. So, if we post something later that says something different, that is why. The other interesting piece of information he told us is that in the past three days, only one bed has opened up in CVICU, so they had only done one surgery in that time. He said Dr. Reddy wasn't happy about that because his passion is doing surgery.

This is certainly a journey we have been on and it's not over yet. Thank you all for your love, support and prayers.