Caden's First 36 Hours

Friday evening, Greg and I tried to get some sleep after things died down. Unfortunately that wasn't until around midnight. Then I had to get up to pump after a few hours and we decided to go up and visit Caden around 4 am. I hadn't gotten to see him since they took him out of the labor and delivery room so I was anxious to see him again. When we got to NICU, we met his night nurse, Pam, and really liked her. She handed Caden to me and I got to hold him again and was very happy about that. I had no idea how much it was going to affect me emotionally, but as soon as I looked at him, I started crying. I talked to him and he opened his eyes and looked around. He was so alert and seemed to recognize my voice and know who I was. Made me cry even more. It was a blessing to be able to hold him and talk to him. We didn't think we would be able to do that for quite awhile. Pam also told us that the cardiologist had just left from doing a 2.5-hour echocardiogram on Caden and that we would probably hear from them during the day on Saturday to find out what they saw. She said it didn't seem like they found anything they were too concerned about or she thought they would have contacted us right away.

After holding him for a bit, we returned to our room and slept some more. By the time they brought breakfast, we were up and around. I didn't get to spend much time with Caden that morning. We had another nurse during the day shift that we really liked as well. And, we were waiting all day to either run into any of the doctors in NICU or hear from them regarding the echo. But we didn't hear anything. Throughout the day, Greg & I were able to take my sisters and my mom in to see Caden and let them hold him. He was really alert and looking around a lot. So adorable!

One of the bigger events of the day was us taking Kyler up to meet Caden. It was very funny. We took him into NICU and walked over to Caden's bed. Greg picked Kyler up so he could look at Caden and Kyler said he wanted to hold him. So, Greg sat down in a chair with Kyler in his lap and the nurse brought Caden over to them to hold together. Kyler was very happy and smiling about it for a minute or so and we were able to get a couple pictures. But, very quickly he had decided he'd had enough and wanted down. Greg put him down and then Kyler wanted Greg to hold him, not Caden. When Greg didn't comly immediately Kyler was not impressed. Kyler then asked me to pick him up and when I didn't do that, he was done and he started acting up. He didn't want to be around Baby Caden anymore. When Greg took Kyler back down to where my mom and sisters were waiting, he announced “I don't like Baby Caden.” I think it's hard on him because he hasn't gotten to spend much time with us and now we were asking him to share us with this new baby and he didn't like that idea.

Saturday afternoon, they did an ultrasound to see if they could determine whether Caden had a diaphragmatic hernia or an eventration (meaning there is no actual hole in the diaphragm, but the muscle is too thin, causing the liver to be able to push it up). Since it was the weekend, a resident radiologist read the results of the ultrasound and thought it was an eventration instead of a hernia. But they wanted to wait until either a fellow or an attending could review the results and make a determination as well.

Saturday evening, we had some good friends come visit. They each got to see Caden for a few minutes. Also, our pastor and associate pastor and both of their wives came to visit that evening. It was really nice of all of these people to make the trip over to Palo Alto to meet Caden and show their support to us.

Saturday night, after waiting all day for the opportunity to talk to Caden's doctors, we were finally updated by one of the neonatology residents. He told us even though they had done an echo on Friday night, they were going to do another one Saturday night. As we were talking to him, the cardiologist fellow came up and introduced himself as the one who would be doing the echo. It ended up being a 4-hour ordeal.

We visited with the pastoral couples from our church after they went in and saw Caden. And after they left, we returned to our room and tried to get some sleep. Around 5 am, we decided we would go up and see him again. I was hoping I could hold him and have some skin to skin contact. When we got up there, however, there were two doctors there around his bed and were working with the nurse on something. The nurse told us she was going to call us as soon as the doctors were done. The two doctors were the neonatology resident we had spoken to the night before, and a neonatology fellow. The fellow told us that after the four-hour echo was finished, the cardiologist had determined Caden did have coarctation of the aorta (coarc). This meant they put him on medication (PGE's) to dilate the vessels and keep the ductus arteriosis open. In order to do this, they had to put a central line in through his umbilical cord. And, they wanted to put in an arterial line to monitor his blood pressure more accurately. The fellow was trying to do that while we were there. Poor Caden, he kept poking him over and over again and never got the line in. They said one of the things that helped them identify the coarc was the fact that although the blood pressure in his lower half was normal and the blood pressure in his upper half were normal, they weren't the same. The lower part of his body had lower pressure, indicating it wasn't getting enough blood flow. So, they looked for the coarc and found it. The fellow had told us that we would be unable to hold Caden while he had the central line so it appeared our opportunity to hold him were over.

Greg and I were having a hard time dealing with watching Caden screaming as they're trying to put the arterial line in. So we went back to our room where I tried to sleep a little more, but by then staff kept coming in and waking me up for various reasons so I gave up. Greg had gone back to RMH to shower, change, etc. and when he returned he went up and sat with Caden for awhile.

Finding this information out was very discouraging for both me and Greg. It's not that we had no idea it could happen. But things had been going so well and we were feeling so good about things. We knew all along that the coarc was a possibility, but were really hoping it wouldn't show up. Friends have reminded me that from the perspective of the medical community, this is a “small/minor” defect and easily fixed. But, it's still hard for us to view it as “minor.” And, because of the medication they put him on, it pretty much keeps him knocked out all the time. He isn't alert and looking around. His eyes are always closed and there doesn't seem to be any awareness of us being there. That is hard to see, especially because on Saturday, he was so responsive to us and would look at us when we held him. But, we had originally thought when he was born that we wouldn't get to hold him at all and that he would immediately get put on a ventilator, so we were blessed with the gift of having a day with him where we could interact.