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.

Tuesday, January 13

Tuesday was a much more quiet day in regards to information. We were able to get a decent night's sleep. However, we are still tired. We got to the hospital earlier in the day and spent some time holding Caden and talking to him. One of the nice things the hospital does is provide meal vouchers for nursing moms of babies in NICU (and other units also). The NICU provides me with labels for bottles for all the milk I pump and then they store the milk for me in NICU. And, I can take a sticker to the NICU clerk and get a meal voucher three times/day for the cafeteria. There is a dollar amount that they will pay. Anything over that, you can pay the difference. It's been really nice because I am able to pump at the hospital (they have pump rooms available) or at the Ronald McDonald House (they have pumps to check out for the duration of the time you'll need one). And, I just take a label to the NICU clerk to get my meal voucher and I can eat in the cafeteria. It has really made it easier for me to be able to pump because I don't have to worry about preparing meals.

After we learned about Caden having the coarc, we decided we wanted to have an anointing for him. So, Greg spoke with both the pastors from our church. They arranged to come back to Palo Alto to do the service on the evening of January 14. After we had talked about this, the hospital chaplin came by NICU and spoke with Greg about any needs we might have. He talked to her about doing the anointing and she said it wasn't a problem at all. She said they could set up a screen around Caden's bed and we could have the service right there. So, it sounds like it's all set for Wednesday night.

The nurse who was on duty Tuesday night told us that every Wednesday morning, the cardiology team gets together to discuss the patients needing surgery and when those will take place. That was the first time we had heard about that meeting so we were glad she told us about it. It was good to know when they might be making the decision regarding when to do Caden's surgery. Other than that, we didn't learn a lot of new information on Tuesday.

Thank you for your prayers as we wait to find out about surgery. We are anxious about it and want everything to go smoothly. And of course, we look forward to being able to hold Caden and cuddle him like a regular healthy newborn.

Monday, January 12

It seems like we just don't have enough hours in the day. We want to get some sleep because we are desperately deprived and in need of it. However, we need to spend as much time with Caden as we can. Right now, they are still allowing us to hold him, but once he goes in for coarc surgery, we aren't sure how long it will be before we can hold him again. Anyway, we have been trying to find the time to write out what has been going on here so those of you following our blog can keep up. Unfortunately, we haven't been too successful with that. So, we are trying to catch up now that we can put more than two sentences together coherently.

Monday was a much more productive day in terms of getting communication from the doctors regarding what would happen with Caden. Since he was born Friday evening, there wasn't a full staff of doctors around who could give us updates on what was going on. So, we were very happy to finally have some more information. We didn't get to the hospital very early because we slept in. We were so exhausted! We got to the hospital around 1 pm and stopped by our social worker's office. All families with babies in NICU are assigned a social worker to help them with anything they might need. Emily is ours and she is great. She had left us a voicemail and wanted to check in with us to see how we were handling things. We talked to her briefly before she headed out to a meeting.

When we got to Caden's bedside, we were able to spend some time holding him that afternoon. When we first got to his bed, there were a couple doctors examining him. They said they were genetic doctors called in to consult because of the many congenital defects Caden has: coarctation of the aorta, eventration of the diaphragm, scoliosis of the spine, etc. They also said since we had another child with a heart defect (Kyler had pulmonary valve stenosis) that made them wonder even more if there was something else involved. They ordered a higher resolution genetic screen than what was done during the amnio. I guess the results of these can take 4-5 weeks to come back. So it will be awhile before we know anything about that. But when I asked them if they saw anything from his facial features or the rest of his exam that directed them to a certain syndrome, they said no. That was all the information we got from them.

Once the genetic doctors left, we talked to the nurse who told us cardiology had ordered another echo to confirm the coarc. She said it was supposed to be done that afternoon. We told her we would like to talk to cardiology and ask them some questions so she paged them. The doctor called and talked to the doctor on the phone. He said at that point, the cardiologists were waiting to hear back from the pediatric surgeons in regards to whether they thought surgery should be done on the diaphragm or the coarc first.

Shortly after Greg talked to the cardiologist on the phone, the neonatal nurse practitioner came by to give us an update. She said she had talked with pediatric surgery and they felt it was more important for the coarc to be repaired first. She said they are still planning on doing surgery on the eventration of the diaphragm but it would be after the heart. The surgery for cardiovascular patients is very complicated due to the space in cardiovascular ICU (CVICU). Surgeries are often scheduled and changed based on bed availability and other patients being more urgent than Caden. The blessing and the curse we have right now is that Caden is doing so well and is stable. It means he isn't at the top of the list for surgery. So, for now, we wait... The other thing she said is that because Caden will be having another surgery after the coarc, he would be coming back to NICU after recovering in CVICU. Most of the time, patients move to another unit altogether after leaving CVICU, but Caden still has more surgery ahead of him.

That afternoon, they performed another echo to confirm the coarctation and did indeed find it. So, they felt absolutely certain that they would need to do surgery to correct it. That evening, yet another cardiologist talked to us and told us the ASD hole in the heart looked minor and wouldn't require surgery. This was different from what we had been told before. They had told us initially that the ASD was large and would need to be taken care of during surgery. He said he thought surgery could take place as early as in the next couple days. And, post surgery, Caden would need to be on a ventilator for at least 24-48 hours.

In regards to the surgery itself, they said Dr. Reddy would need to decide whether he could do the operation from the left side, going in through the ribs, or if he would have to go in through the chest. His preference is to go in through the side. However, the cardiologist we spoke to said it looked like that might not be an option based on the images they saw on the echo in regards to the location of the coarc. He said it was possible they would order a CT to see if they could get any better pictures to make a final determination but this hasn't been done yet.

It was a day full of information and questions. We received lots of information and asked a lot of questions, but sometimes we were left with more questions than answers. This has been a very overwhelming process, especially when we aren't getting enough sleep.

Sunday, January 11

Greg's parents and sister arrived in the morning on Sunday. Greg took them in to see Caden one at a time. In NICU, only two people per baby are allowed at a time and one of those people must be either me or Greg. No one can visit him without one of us present. It makes visiting a challenge, but at least we can take people in. They were unable to hold him, but were happy they at least got to see him.

That morning, after my mom and sisters brought Kyler over to the hospital, we took Kyler up to see Caden again. This time, we had a gift from Caden to give to Kyler. Greg had put it up there so that when we took Kyler up there, he would be able to see it with Caden and associate it with him and hopefully have a positive influence on his opinion of Caden. Apparently it worked. We had gotten a toy that has several wheeled vehicles and a drill, etc. The child can take the vehicles apart and put them back together again. Right up Kyler's alley! So, when he opened it up and saw what it was, he was pretty excited. We got a video of him thanking Baby Caden for the toy. Adorable!

That afternoon, my mom took Kyler back to Sacramento and my sister, Cheryl stayed with us. My sister, Shelly, and her daughter had to drive back to Portland that day and they left in the morning. Greg's parents and sister, Natalie, stayed for part of the afternoon before leaving. Greg's parents had to drive back to Medford. So, the afternoon and evening were more quiet. I was trying to spend as much time holding Caden as possible because if they put in the arterial line, they had said we wouldn't get to hold him anymore. Thankfully, they were letting us hold him even with the central line. But there are a lot more tubes and wires to navigate around in order to transfer him to our arms. And, he usually has to stay in a small bed while we hold him. It makes it less personal, but at least we get to hold him closer to us and hopefully he can feel our presence.

We also found out later that day, from a cardiologist after yet another echo, that not only does Caden have a coarc, he also has an ASD hole in his heart. According to that cardiologist it would require surgery to close the hole. He said this was something that wouldn't have been found prenatally because all babies in utero have it. But for most babies, it closes immediately at birth.

Cheryl and I were sitting with Caden in NICU when one of the Neonatology attending physicians came over and sat down to talk to us. It was really nice because he just kicked back and answered questions we had. He showed us the x-ray of Caden's torso showing the vertebrae. We could clearly see the scoliosis of the spine and where two of his ribs are criss-crossed. The doctor told us Caden would definitely need surgery at some point but it wasn't immediate. He said we would need to talk to an orthopedic surgeon to get more information on that. He took some time to explain the structure of the doctors in neonatology and how they were all set up in teams, etc. It was really nice to have him take the time to spend with us answering questions we might have. He was very kind and compassionate.

We have just tried to spend as much time in NICU as possible so we can hold Caden and talk to him. It's been hardest for me because I have to pump many times a day. So, for me to find time to pump, see Caden and sleep has been a challenge. I feel like we're finally starting to get into a little bit of a routine, but it's not always easy.

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.