Friday, January 30

Yesterday was a pretty quiet day for Caden and for that we are grateful. We are hoping the doctors are finally paying attention and realizing that he does not like big changes and his body doesn't tolerate them well. It seems like they would make a big change and then an hour later, they would have to backtrack in order to respond to Caden. They would take two steps forward followed by one step backward. But yesterday they seemed to just take one small step forward at a time and Caden seemed to respond fairly well. They adjusted his ventilator settings several times and as long as they did it in small increments, he tolerated it well and his blood-gas levels were good.

Before doctor rounds in the morning, one of the cardiac surgeons came by and had us sign a consent to close Caden's chest. He said they would do this Saturday or Sunday, but it was a day-by-day decision and most likely it would be Sunday. However, he said they would leave the chest open as long as 10 days if necessary. Before Greg left the hospital last night, another cardiac surgeon said they would not close his chest today but probably on Sunday or Monday. They are waiting for the swelling to go down a little more in the chest before doing it. The first doctor we spoke to said that due to the emergency procedures on Wednesday, they would be unable to close him with a continuous stitch which would leave a smaller scar. He said they would be required to use individual stitches and Caden will have a larger scar because of it. But, we figure it is all part of what will make him unique. We just want him to be okay. A scar is the least of our concern.

During rounds, the doctors also said that Caden's lung function was improved on Friday from Thursday and that was good. They started to reduce the amount of oxygen they were delivering through the ventilator. They also ordered another echo in order to see how the heart function was compared to the day before. Because of the cardiac arrest, they put him on epinephrine in order to help his heart pump stronger. Based on the results of the echo, which showed improved heart function from Thursday, they started to wean him off the epinephrin as well. As it remains right now, Caden is completely sedated, on heavy pain medication and on a paralytic medication in order to prevent him from doing any breathing on his own. As they phrase it, they don't want “any audience participation.” They want to do all the breathing for him so they can control the pressures in his lungs. And, they don't want him struggling or moving at all which is why they have him completely sedated, drugged and paralyzed. As a parent, it's pretty hard to see your baby in that state, but it's better than knowing he is in a lot of pain.

The other thing they did Friday was to do an ultrasound of Caden's brain to check and see if there was any bleeding as a result of his pulmonary hypertensive crisis and subsequent cardiac arrest. By the time we left the hospital last night, they had not received an official report from the radiologist, but they thought everything looked normal. That was a relief for us.

It seems that as long as they keep making small changes, Caden tolerates them much better. And, instead of taking two steps forward and one step back, we just take one baby step forward at a time. The end result is likely the same in terms of elapsed time, but is probably less stress and trauma on his poor little body. So, all-in-all it was a good, quiet day. If every day continues like today, we will be happy. Even if the progress is small, that's okay with us. We just don't want huge setbacks like Wednesday. Thank you for your prayers as we continue on this roller coaster ride. It's been a long ride and it doesn't appear to be over any time soon. We are thankful that God is in control and that he is holding Caden in his hands even though we can't hold him in ours.

Moving

Tonight when Greg and I were at the hospital after shift change, the doctor decided to move Caden from the private room he was in in the PICU side of the unit. The way they tell it, they didn't have the opportunity to put Caden in one of the CVICU beds prior to this evening, but now there was a space available. This would make it easier for them to keep an eye on Caden and be better all the way around. Greg and I think that PICU just wanted their bed back. We're a little disappointed because the private room was very nice. But we understand the need for the move. Caden is now in the main room with the CVICU nurses station and there are two other babies in the room. I think it will definitely be easier on the nurse as she won't have to call someone to cover for her while she gets something or have other nurses bring her supplies she needs. And, hopefully it will provide a higher level of care for Caden as he is really the most important part of the situation.

It was quite the endeavor to watch them get him ready to move. It ended up taking nine people to get all the equipment unplugged and ready to go and then set up again in the new location. They had taken him off the ventilator and were hand-bagging him during transit. This was working fine except at one point as they were trying to get everything hooked back up again in the new spot, they lost air in the bag and couldn't push any air into him. The doctor was the one bagging and she got pretty excited when there was no air and that made me very nervous. When you see the doctors get riled up like that, you know it could potentially be very serious. Thankfully they got the air hooked up and everything was fine.

Caden was not impressed with the move. He has been showing himself to be very opposed to change, especially big changes. So, when they took his blood-gas, his CO2 levels were really high. Also, his respiratory volumes were lower than they like to see. The respiratory therapist and the nurse worked together to suction him and clear out more mucus plugs from his airway and that made a big difference in his volumes. Greg was staying at the hospital for awhile to make sure Caden settled in okay and his numbers and respirations looked good.

One thing the attending said tonight is that she thinks it is possible all the mucus is the result of some kind of cold or virus. If this is the case, it would have been something he was exposed to while in the NICU. But there is no way to know for sure. It was interesting that she suggested this because it was something Greg was wondering about. That is the latest for now. We'll update more as things change.

Thursday, January 29

Last night after evening rounds, the attending physician sat down with me and Greg to go over the events of the afternoon. This was mostly for Greg because he wasn't around for the explanations I received earlier in the day. She took the time to answer any questions we might have and helped Greg understand all that had taken place. I asked her if Caden coding set us back to surgery day, or if he was in worse shape than before surgery. She said he wasn't in worse shape than before surgery, but we were back to square one following surgery. This is very discouraging to us, but we are grateful Caden is still alive. In response to me asking how long she thought Caden would remain in CVICU, she said he would probably be there at least two more weeks. But it is really hard to predict. And, once he leaves CVICU, he will go to another unit to work on feeding, etc. before being discharged to go home. So, we will definitely be here for awhile longer.

Our pastors and their wives had originally planned to come over and take us to dinner Wednesday night. But after the events of the day, we didn't really want to leave the hospital. They were kind enough to pick up some food for us and bring it to the hospital for us to eat. We enjoyed the time and fellowship with them. It is so nice to have such supportive pastors. The chaplain at the hospital is amazed that our pastors would come over here to visit us, and especially that this would be their third trip over. We told her we had an amazing church family and an active prayer chain who was praying the minute they found out Caden was in an emergency status. We are truly blessed by that. In addition to our pastors coming over, Greg's parents decided to drive down from Medford to support us in any way they can.

As I mentioned before, Emily had arranged for Greg and I to have a bed to sleep on at the hospital so we could remain closer to Caden. We were happy to have that option and did sleep there. However, because of all the visitors and increased adrenaline from the afternoon, we didn't end up getting to bed until after midnight sometime. I got up once during the night to pump and went into Caden's room after that to see how he was doing. His nurse said he was still stable and the doctor had been lowering his ventilator rates throughout the night because he was doing well. Greg also went to see him during the night and spent a little time with him.

This morning during rounds, the doctors seemed to be happy overall with Caden's status. He had a pretty good night. It was quiet which was a good thing. And, they adjusted his ventilator settings a few times while they were in the room. They also said they were going to put him back on TPN for nutrition since they want to keep him off of foods by mouth until later. They also said they were going to leave his chest open for a little while longer in order to keep any additional pressure off the lungs and heart. The biggest challenge they are dealing with is trying to increase pressure in the right lung while not putting too much extra pressure in the healthy left lung. It's quite a balancing act. They had also suctioned him several times and had gotten a fair amount of mucus plugs out which they thought was a good sign. In the meantime though, they are keeping him heavily sedated and paralyzed so that he doesn't move around too much and cause undue pressure on his organs. It's pretty hard to see him so drugged and paralyzed so that he can't even move. But we understand why they are doing it.

That is the update for now. I will try to post additional entries as things change. But, we are hoping for uneventful days and weeks ahead. We just want slow, steady progress. We are completely exhausted, but we're managing to cope as best we can.

More about Today

After talking with the CVICU attending physician, I realize Caden was in full cardiac arrest. I have now been in to see him, however, I was unable to look at the open chest. So I had them cover it with a piece of gauze (yes I am a wimp!). The poor thing is covered in iodine and looks a complete mess. But as long as he is stable, that is okay. In the doctors' terms, he is critical but stable.

It's been a very hard afternoon. Emotionally draining and physically exhausting. Greg is here now and I am glad for that. One of the hardest things for me is that I feel like we're back to square one or further back than when we started. Yesterday, Caden was off almost all his medications and had many of his tubes out. Now, he has a catheter again, and is back on many medications as well as nitric oxide. It just feels like we took HUGE leaps backwards today.

In talking to the attending, she said they were as surprised as me that this happened. They said there were no indicators that there would be any kind of arrest like this. She said she feels very good about how quickly CPR was started and says the chance of permanent brain damage from lack of oxygen is low. But, the fact remains, that there is a chance because his oxygen levels were so low. But there is no way for us to know until they allow him to come off the sedation. They said they will plan on leaving his chest open until tomorrow for sure and will probably be able to close it at that time. But she said there are cases where they leave the chest open as long as a week. Hopefully we're not in that situation. Any way we look at it, it appears our stay here will not be ending any time too soon.

Medical Emergency

This morning, I was at the hospital for doctor's rounds and everything looked good with Caden. They had actually started feeding him breastmilk through a tube which was good news. And, they were making minor adjustments to his ventilator rates. But everything looked okay and he was stable. Just before 12:30, I decided to go back to the Ronald McDonald House and get something to eat so I took the shuttle. I was just sitting down to eat in the kitchen at RMH when I got a call from one of the CVICU doctors. She said Caden was having a medical emergency and I needed to come back to the hospital. She didn't give me much information, just that his heart rate had been dropping and they had to open his chest again. She said they were making sure there was a social worker here when I arrived so I had someone to talk to. I knew that meant it couldn't be good news.

I threw my food in the trash and tried to call my mom who had my car. She didn't answer and I didn't know if she just didn't hear her phone or if she wasn't at RMH. So I ran up 3 flights of stairs to our room to see if she was there and she was not. I had just missed the shuttle back to the hospital so my option of getting there was to walk. I ran/walked the whole way and called Greg as I was leaving RMH. I was crying and told him Caden was having an emergency and I was going to the hospital. He said he would activate the prayer chain immediately and would get his stuff together and drive back over here.

When I got to the hospital I ran to CVICU and upon arriving outside Caden's room, there were about 30 people in there. I honestly don't know how many people were in there or not, but it's a decent size room and it was packed. Not a good sign. The social worker (not Emily who is our social worker) introduced herself and said Emily was not on site but would be coming shortly. She showed me into a room where I could wait to find out further information and sat with me until someone could come in to give me an update.

One of the nurse practitioners came in and said Caden was doing a little better but they were talking about putting him on ECMO (heart-lung bypass machine). This would be a huge step backward in his recovery process and is a bad sign. But she said she didn't really know what the decision would be because it looked like he might be more stable and they wouldn't need to put him on. She went back to check on him and came back, telling me they were holding off on ECMO for now. His heart rate was back to normal and his blood pressure was also normal. His chest was open and they had to do manual chest compressions on his heart once the chest was open.

A very brief synopsis of what happened is this: Caden's oxygen rate started dropping followed immediately by a drop in heart rate and blood pressure. CPR was started immediately and a cardiovascular surgeon was called in to open his chest. With the chest open, they continued to do heart compressions in order to get the heart rate back where it needed to be. They thought there might be fluid around the heart as that can sometimes be a side effect following heart surgery. However when they were in the chest, they couldn't see much fluid so that didn't appear to be the cause of the emergency. After running through a list of things they thought could have caused the drop, they believe it was either pulmonary hypertension or possibly a mucus plug in the endotracheal tube. They were able to get him stabilized and his heart rate came back to normal. However, because they don't want to put undue pressure on the heart, they have decided to leave the chest open for now. They will put a sterile patch over the opening and will keep him on antibiotics to help prevent infection. I have not been able to see him yet as the room is still a sterile environment and they aren't ready to let me in. But, hopefully soon.

Emily arrived and was with me and my mom (who had gotten here by then) when the doctor came in to let us know what had happened. She said she would try to arrange for us to have a bed to stay in here at the hospital tonight if we want it. I told her to go ahead and set it up and we would see how we were feeling tonight. Greg is on his way back from Sacramento right now and is probably wishing he hadn't left. But there was no way for us to know something like this would happen. Caden had been so stable and was doing well so there was no reason for us to think there would be a problem.

I am doing okay at the moment but look forward to having Greg back later this afternoon. Please pray for Caden and that he will be okay following this emergency and that there won't be any permanent damage from lack of oxygen for a time. And, please pray for me and Greg that we might be able to get through this tough time.

Extubation

After much debate back and forth in regards to whether or not they were going to extubate Caden today, the end result was they decided to do it. I asked the nurse to call me and let me know when they were ready to do it so I could be there for it. I had just finished eating in the cafeteria when she called and told me they were ready. So I went back to Caden's room and stayed while they took the tube out and put him on CPAP. They thought this was the best route to go since he had been on CPAP prior to surgery and felt he would be able to tolerate it reasonably well.

However, once he was off the ventilator, and on the CPAP, he was having quite a hard time breathing and was working really hard. The nurse took a blood-gas to see how he was processing CO2 and it was really high which is bad. So, the doctor decided to let him work for a few minutes to see if he would become more comfortable. And, the respiratory therapist adjusted the pressures administered by the CPAP trying to find a balance of what would work best for him. After 15 minutes they took another blood-gas and the number was still high, but it was coming down slightly. At this time, an attending came in and got involved in the process. He suggested some other ways to evaluate how Caden was doing and they assessed him for a few more minutes. By this time though, they had taken him off the CPAP machine and were using a face mask on him and they still weren't liking how he looked. But they took another blood-gas. It was even higher than the first one they took which was a bad sign. So, based on that information, they decided to put him back on the ventilator.

It was pretty emotional for me because once he had the breathing tube out of his throat and was on CPAP, Caden was trying to cry. But his larynx was so swollen and traumatized, no sound came out. It broke my heart to see him like that. And, it was really hard for me to see him put back on the ventilator. Not because of the machine itself, but for fear of doing more damage to his airway and cause him more trouble or possibly permanent damage to his vocal chords. The doctor said they would use a smaller tube so as to help prevent more damage.

When they intubated him again, they asked me to leave the room. They had to sedate him and I didn't want to watch the procedure anyway so I went to pump. When I returned, they were done and the doctor talked to me for awhile. I asked if they would leave the tube in for a couple more days to let him heal more and she said she didn't know, it would really depend on him. She said she felt it was the right decision to extubate today and push him a little bit. The blood-gases they took after putting the new tube in were the best ones he's had all day. So she thought working a little harder might have helped move some plugs out of his lungs which was good. And, she said it wasn't that uncommon to re-intubate.

By the time I left the hospital tonight, they had already lowered the ventilator rate down a couple times and she said they would continue to adjust it through the night based on how he responded. She said it was too hard to predict how long they would leave him on it this time but I told her I didn't want a repeat of what they did tonight because I was worried about more trauma for him. I also asked her about the possibility of starting feedings tomorrow and she said she really didn't want to guess because it would depend on how he did tonight.

Anyway, this evening ended up being a little stressful and emotional for me. The doctors feel this wasn't taking a step backward, but from my perspective it's hard to see it that way. But, Caden is still stable and hopefully will progress to the point where they can take him off the ventilator and leave him off. The biggest difference with Caden compared to the rest of the babies they deal with in CVICU is that he is not just a cardiac patient, he has respiratory issues as well and it seems like they didn't take that into consideration when they pushed to extubate him. The doctor said if he had just been a cardiac patient only, they would have taken him off the ventilator the day after surgery. So, things are definitely different with Caden. Please continue to keep us in your prayers.

3 Days Post-Op

Sorry we haven't posted anything for a couple days but not too much has changed. Caden is doing well post surgery but isn't speeding along in his recovery. The doctors are not concerned, but are just recognizing that he is slower to respond to changes than other babies are. Yesterday, they said they would try to wean him off the ventilator today and get him moved back to NICU tomorrow. This morning during rounds, the doctors said he still needs to lose a lot of the fluid build-up that was a result of being on the heart-lung bypass machine. His face, arms and legs actually look pretty good. But his abdomen is still quite swollen and they want him to lose some of that fluid before they take him off the ventilator. But they are slowly moving the ventilator rate down and he is doing okay with it. The doctors also said that they will probably wait to feed him until tomorrow. Although his bilirubin was back up and they thought feeding him would help him lower that.

Most of his medications have been stopped. He is still on Lasix to help him get rid of the extra fluid. And, he is receiving some calcium to replace what is being lost due to the Lasix. They also give him morphine periodically to help him be comfortable. But he is off the sedatives, the blood pressure medications, the heparin, and who knows what else. The nurse also removed the IV from his left arm so his left arm is bare. He still has plenty of other tubes and wires, but he's handling it well.

Because he is not so heavily sedated, he has been opening his eyes more. This morning after rounds Caden had his eyes open for quite a long time, just looking around. It was very sweet. I took a few pictures and a video and talked to him for awhile. He was wiggling his feet and left arm around a bit also which was good for me to see. It helps us see his progress.

I left Caden's room for about an hour and when I came back to check in and see how he was doing, his nurse said the attending doctor had come in (she wasn't there during rounds) and said she wanted to push him a little bit. So, she wanted to try to extubate him later this afternoon. So in the meantime, they were lowering the ventilator rate some more and were moving that direction. In addition, they also removed his catheter so that is one more tube gone. It is so nice to see things slowly coming off of him. The nurse is supposed to call me this afternoon if they are going to extubate. I'd like to be there to see how he does afterwards.

We are very anxious to go home, but we realize that we need to be patient. We want Caden to take his time with recovery so that he can be in the best health possible when we leave. Greg is actually going to go home today for a few days. He has a project he needs to get done at work before the end of January. Since Caden has had surgery and is doing well, he thought he would go home and get the project done. But, we are still hopeful we will get to move home by sometime next week. It all depends on Caden. The doctors keep telling us that he is the one who is in charge.

24 Hours Later

Here were are, more than 24 hours after surgery and so far things are looking good. We were told yesterday by the doctor in CVICU that Caden would most likely be there for 48 hours and then moved back to NICU to complete his recovery. He said that if everything went perfectly smoothly, it was possible Caden could go home within 5-7 days.

Today, the word is that Caden is doing well, but he is not at the front of the pack in regards to a speedy recovery. The doctor is not at all concerned, but he said Caden was taking a little longer to respond than some babies do. He thought it was likely that he would remain in CVICU until Tuesday for sure and possibly even until Wednesday.

The situation right now they are dealing with is the fluid retention. Caden is quite puffy and isn't peeing it out as fast as they would like. And, they are having to tweak the ventilator frequently because they are trying to find the right balance for what works with both the left and the right lung since they have different volume currently.

Shortly after surgery, they did an abdominal ultrasound. There was some concern that Caden's abdomen looked a little distended. They wanted to make sure there wasn't any fluid in the abdomen causing that. But when they felt the belly, everything felt fine. They said they would continue to monitor it and if they thought he had fluid, they would have to put in a tube in the abdomen to drain it out. So far, they aren't worried about it and it appears to just be part of the overall puffiness.

The cardiologists were going to do an echo this evening to make sure everything looked good with the aorta where they repaired the coarc. We haven't heard anything from that, but assume that it looks good or they would have called us.

So, overall, Caden is stable and doing well, he's just not recovering rapidly and that's okay. They are keeping him pretty heavily medicated so he doesn't feel any pain or discomfort. And, tomorrow they might start giving him some Pedialyte through a tube to see how his bowels can tolerate food. If he does well with that, they might be able to start giving him breast milk through a tube as well. Then, once he is doing well with that, hopefully we can progress to bottles. But, one step at a time.

Our little miracle is definitely living up to his name. He is a fighter (Caden) and God is certainly rescuing him (Joshua). Thank you for your continued prayers for him and us.

Post-Op

We just met with Dr. Reddy and he updated us on the surgery. He said it went very well and he is happy with the outcome. They repaired the coarc first and were able to cut out the narrowed portion and pull it together without having to use any additional tissue. They put him on the heart-lung bypass machine for a little while during the repair but did not have to stop the heart. While he was on the bypass machine, they did have to give him a blood transfusion which is normal under these circumstances.

Once the coarc was repaired, they repaired the diaphragm. As they believed before going into surgery, it was an eventration and not an actual hernia (hole) in the diaphragm. There was good, healthy, diaphragm muscle all around the one area that was bulging up with the liver. They were able to take tissue from Caden's pericardium and stitch it to one side of the healthy part of the diaphragm and stretch it across to the other side and stitch it down from there. They didn't have to push the liver down with their hands because once they got the strong piece of the pericardium attached it naturally went down on its own. This was good because the liver is very easily damaged or punctured and could result in bleeding, etc. So it was good they didn't have to push it down. In addition, the right lung was attached to the diaphragm muscle and they had to cut that apart. As soon as the eventration was corrected, the right lung did inflate and get bigger which is what they were hoping for. It was definitely being compressed by the eventration.

Dr. Reddy expects Caden to be in CVICU for 24-48 hours but expects him to do well. They are currently doing an abdominal ultrasound to make sure everything looked good with the liver and the lungs. We asked where Caden would go after his stay in CVICU and he asked where we would like to go. We told him we would just assume he go back to NICU since we are familiar with the staff there and Dr. Reddy said that is what he would tell them.

We are so grateful and so happy things went well. We still haven't seen Caden yet because they were unable to get him immediately to his room because the previous occupant hadn't been moved to another unit yet. We were told we would get to see him in another 20 minutes or so. We know that God was present with Caden in the operating room and with the doctors as they performed surgery. We are looking forward to seeing him even though it's going to be hard with all the additional tubes/wires and all. God is so good and we are so blessed. Thank you so much for your prayers! Now we are hoping for a quick recovery and that Caden is able to eat well so we can go home!

45-Minute Notice

Our pager just went off, giving us a 45-minute notice that Caden was done. The 45 minutes is usually what it takes for them to get the baby settled in CVICU. But, we talked to the nurse who paged us and she said everything went well. She said the surgeons should be out any time to give us an update. And, when it is okay for us to see Caden, they will let us know. Thank you all so much for your prayers for Caden and for us during his surgery. We've been warned that he's going to look pretty beat up after surgery, so we are trying to prepare ourselves for that. But we are praising God that he made it through surgery well and we will be able to see him soon. God is good!

Saturday, January 24

Last night we went to bed hoping we would find out if Caden would be able to have surgery today. Greg was at the hospital after shift change and talked to Caden's nurse. We wanted to make sure if she heard something early in the morning that she would call us right away so we could get to the hospital before they took him to the operating room. And, Caden's primary nurse, Irene, was going to be working today, and we knew she would call us if she heard something when she came on. So, we went to bed and tried to get some sleep.

About 7:20 this morning, Irene called us to let us know that anesthesia would be coming to get Caden at 9 am. So, we jumped out of bed, showered, and went to the hospital. As soon as we got there, Irene asked if I wanted to hold him and I said yes. So I held him for a few minutes and then Greg took his turn. The doctors had ordered a final chest x-ray before Caden went to surgery just to make sure the lungs looked okay and if there was any fluid, they were going to give him Lasix. I don't think they ended up giving him any Lasix, but the anesthesiologist said they often give it during or after surgery to get rid of the extra fluid in the body.

Right at 9 am, the anesthesiologist came in to discuss any further questions we might have. We didn't have a lot of questions as the fellow who had talked to us on Thursday had pretty much answered everything for us. So, after a few minutes, they got Caden all situated in his bed and we all walked to the entrance to the OR together. We kissed him goodbye and sent him through the doors with the anesthesiologists and Irene.

Now we wait. We have a pager which they will use to notify us when surgery is over. We don't anticipate hearing anything before 2 pm and it could be later. We just don't know. Thank you all for your prayers as we enter into this next phase of Caden's care and recovery. Greg was reminded this morning that Sabbath was Jesus favorite day to heal. We have asked for His timing and we are grateful it is taking place on His schedule.

Surgery Today at 9 am

Just a quick note to say that surgery has been scheduled for this morning at 9 am. We will post more when we have more information. Thank you so much for your prayers.

Surgery Update

Caden's nurse and Emily, our social worker, have both made phone calls to CVICU in regards to the possibility of surgery today. What they tell us is there are only 4 beds available for the immediate post-op patients and none of those beds are available at the moment. However, they did say it was very possible it would happen over the weekend because Dr. Reddy often does surgeries then. So, we will continue to wait for further information. But at this point, it is very unlikely surgery will happen today. We are obviously disappointed, but we did know it was a possibility this would happen. So, we are trying to take it all in stride and be patient. Easier said than done. In the meantime, however, Caden is just hanging out. He is very mellow and relaxed today. When it comes time for surgery, he is all set to go. So that is good. We are grateful that surgery wasn't canceled because Caden was sick or something like that. We will keep you all posted.

Surgery on Hold

When Greg and I arrived at the hospital early this morning, Caden's nurse told us his surgery had been put on hold. She said the charge nurse had just let her know about 10 minutes before we got there. We are of course disappointed. But apparently there are no beds available in CVICU. We think it's because somebody didn't get discharged that they expected. So, we aren't sure if there is still a possibility of surgery later today, or if it's off entirely. But, it could still happen over the weekend, if not today. Please pray that things will happen in God's timing and that we may have the patience to wait.

Thursday, January 22

Today when we went to the hospital we were hoping that nothing had changed in regards to Caden having surgery on Friday morning. The nurse told us she thought things looked good, but couldn't guarantee it. She said that the lab work had been ordered for early Friday morning and that was a good sign. However, she said they had not ordered the blood from the bank yet. So, they were hoping that would still happen this afternoon.

While we were sitting with Caden, the nurse asked us if we wanted to hold him and we jumped at the chance. We haven't been able to hold him since they put him on CPAP last Sunday. She thought it would be nice for us to hold him before he goes in for surgery. So, Greg held him first while I ate and pumped. Then when I got back, we switched and I held him. Over all I think we held him for about 2 ½ hours. It was really nice to be able to do that.

An anesthesia fellow came by while I was holding Caden and talked to us about what to expect when surgery happens. She told us she didn't know whether we would have surgery tomorrow or even Saturday so that made us a little nervous. We so desperately want to get through surgery so Caden can begin the healing process. But, she told us if it is tomorrow morning, they would come get Caden from NICU around 7 or 7:15 am. She said we could walk with them to the doors of the operating room and then we have to say goodbye. We will get a pager that works anywhere in the hospital so we can be notified as soon as surgery is over. She said if the surgeons say it will take about four hours, that is for their part and doesn't count the time it takes for anesthesia to get Caden ready in the beginning. And, she said once surgery is over, the anesthesiologists will take Caden to CVICU and get him settled there and get his care transferred over to the staff in that unit. So, she said we should anticipate it would take an hour and a half to two hours above and beyond surgery before we can actually see Caden again.

This evening when we went back to the hospital, Caden had a new nurse and we talked with her for a few minutes. She said the blood had been ordered from the bank. That was the last hurdle in preparing for surgery. And, the medical staff we have talked to say that being scheduled for the first surgery of the day is the best position to be in. That is the least likely position to be bumped for something else. That is reassuring as we are ready for this to be done with!

Greg and I plan to go to the hospital around 6 am tomorrow so we can spend some time with Caden before they take him to surgery. We would appreciate your prayers for the surgeons as they work on Caden. That they would have steady hands and there aren't any complications. And, we ask for your prayers for us as we wait during surgery. Give us the peace, strength and courage to get through the surgery as well as post-op recovery.

Wednesday, January 21

Today was a very eventful day in terms of communication regarding Caden. We got to the hospital a little before noon and upon arriving, one of the cardiac surgeon fellows came by and said they were going to talk to pediatric surgery regarding how to do Caden's surgery. Shortly after that, the neonatal nurse practitioner came by and started giving us an update regarding conversations between neonatology and cardiac surgery. At that point, she said it sounded like cardiac surgery and pediatric surgery were going to coordinate to do the surgery together, but the timing would be driven based on Dr. Reddy and availability of a bed in cardiovascular ICU (CVICU).

The neonatology attending and our social worker came in and joined in the conversation as well. The neonatologist said he had talked with pediatric surgery and they were planning on joining in the surgery after Dr. Reddy had finished with the coarc repair. They would take over and repair the diaphragm and close up. It was nice to know there was finally some communication going on, but it still sounded like Dr. Reddy hadn't made a final determination.

In the meantime, our nurse had told us they needed to take out Caden's central line from his belly button because it wasn't going to last much longer. And, they were going to put a PIC line in to take it's place. She said we would need to sign a consent in order for them to do the procedure. The transport nurse assigned to do the PIC line came by and explained everything to us and we signed the consent. We didn't want to see her put it in, so we decided to go back to RMH to eat. No sooner had we gotten back there and were eating, than Caden's nurse called me and said that Dr. Reddy was coming to NICU to talk to us about Caden's surgery. This was a pleasant surprise since we had been wanting to speak with Dr. Reddy, but had given up on the idea because it did not appear to be a possibility. We did not waste any time heading back to the hospital.

We ended up being there almost an hour waiting for Dr. Reddy to show up, but at least we were there when he arrived. He said it was up to us whether we wanted the surgeries done separately or together. He said if they were done separately, that pediatric surgery would need to repair the diaphragm first because they would need to relieve the pressure on the right lung. Then, Caden would spend a few days recovering from that surgery before Dr. Reddy would go in from the left side and repair the coarc. He said he wouldn't do the coarc before the diaphragm if the surgeries were done separately because in order to go in from the left side, they have to partially collapse the left lung. And, if the right lung was already compromised, they wouldn't want to compromise the left lung at the same time.

He also said if he went in through the chest and did the coarc from there, he could very easily take care of the diaphragm at the same time. He said he would be willing to talk to pediatric surgery to see if they wanted to scrub in and participate, but he wouldn't leave Caden in the middle of the operation. He said he would remain through the whole thing and would be the one to open and close. But, he said he had not personally spoken with anyone from pediatric surgery, so the cardiac surgeon fellow that was with him, paged peds surgery and they called him right back. So, while we waited, Dr. Reddy talked with one of the peds surgeons and they agreed that Dr. Reddy would do the surgery by going in from the front and would repair the coarc first. Then, someone from peds surgery would come in and they would work together to repair the diaphragm. Then, Dr. Reddy would complete the surgery and close Caden up. One of the main things Dr. Reddy was concerned about with simply handing Caden over to peds sugery in the middle of the operation is that they are not used to doing surgery from the midline and cardiac surgery is used to doing repairs from that vantage point. This is the approach we are most comfortable with so we are glad to have had the conversation. Caden will only have one surgery and Dr. Reddy will remain through the whole thing. But in order to ensure the diaphragm is repaired well, peds surgery would scrub in and assist in that piece.

Once we had sorted out the surgical plan, we discussed the dilemma of timing. Dr. Reddy said that Caden is scheduled for surgery on Friday morning at 7:30 am. He is the first patient on their schedule that day. Dr. Reddy reminded us that there is always the potential for that to change if another patient who is worse off needs surgery, but for now, this is where we're at.

As Greg was leaving the hospital after our conversation with Dr. Reddy, he ran into the neonatology attending doctor and told him about what Dr. Reddy had said. The neonatologist expressed some concern about the arrangement, but he said he was going to close the loop and contact peds surgery and see what they told him. He wanted to make sure everyone involved was okay with the arrangement before we proceed. We are okay with that because we want what is done to be in the best interest of Caden. So, hopefully he will get back to us today with what he finds out.

I can't express how relieved I am that we now have a direction. I feel like my stress level has decreased immensely today simply because there is a plan in place. Even if Caden's surgery gets bumped for another baby who is more critical, I at least know there is a plan and that he's not being ignored. We just want to make forward progress. So, I don't know if we'll get any more news in the next day that is different than what we were told today, but if so, we'll keep you all posted.

In the meantime, we would appreciate your prayers specifically for Caden's surgeons and that everything will go smoothly in the operating room. And, prayers for us as we wait for him to come out and start his recovery. That will have it's own set of stresses, but we are really happy to be moving forward. It means we'll be one step closer to bringing our baby home! We appreciate all those who have been praying in earnest and we are reminded that when we work we work, but when we pray God works!

Tuesday, January 20

On Tuesday, a good friend from Sacramento came over to visit. She's so awesome to drive all the way over here for a short visit. It was great to see her even though it was brief. During her visit, we went in to see Caden. After awhile she went out and my sister came in. While my sister was in the room with me, one of the neonatology fellows came to tell us he had just spoken with one of the cardiac surgeon fellows and he was going to come talk to us in about 10-15 minutes. I told Cheryl to go call Greg and tell him to come to the hospital right away so we could both talk to him. Up until this point, we had been unable to talk to any of the surgeons and were quite anxious to do so. Especially because we knew that on Wednesday mornings, the cardiac team has their weekly meeting to discuss the patients needing surgery. We wanted to make sure Caden was on their radar screen and that they would talk about when to do his surgery.

Greg showed up shortly and arrived before the surgeon. When he got there, we had many questions for him, but he didn't have any real answers. He did tell us he had a procedure scheduled with Dr. Reddy that afternoon and he would talk to him at that time and would give us an update later in the day. He said Dr. Reddy would be the one making the decision about when to do surgery. And, he didn't want to speculate on what Dr. Reddy might be planning. However, he did give us his cell phone number and pager number and told us to contact him after 7 pm last night so we could get the update. We were so happy about that because even though he didn't give us any answers, he was a contact person and he has access to Dr. Reddy, which we don't.

In the afternoon, Emily, our social worker, called me to check in and see how we were doing. I told her the truth, that we were very stressed and that every day it seemed to be getting worse. We just want to have some sort of timeline for surgery for Caden and feel that he is important to the surgeons. She was very understanding (it is her job, I suppose) and promised to talk to the neonatologist attending handling Caden's case. She said it's the neonatologist's job to be the advocate for the baby with the surgeons. So, she called him and called me right back, telling me that he was arranging a meeting with himself, the pediatric surgeons, and the cardiac surgeons for Wednesday. This is the first time I think all of these people will be getting together at one time to discuss Caden's case. There has been some discussion on the phone about him, but I don't think all three areas have all met at one time to make a plan. So we are very excited to hear what comes out of that meeting.

Then, last night, Greg called the cardiac surgeon fellow to find out what Dr. Reddy had said in regards to Caden. Again, he didn't have a lot of new information. But he did say that Dr. Reddy said they were going to aim for Friday or Saturday for surgery. However, he added that Dr. Reddy didn't really want to give us a day because he thought if it got changed, that we would be upset. The reality is for us, that we would rather have an idea of the date and if it gets changed we'll have to deal with it. But the not knowing or having any idea of when it would take place was really hard on us. So, the cardiac surgeon fellow told us he would get in touch with us on Thursday to get our consent for the surgery and hopefully it would happen on Friday or Saturday.

I'm feeling slightly more optimistic today than yesterday and that is good. I just want to know that Caden is going to be taken care of so we can start the recovery process and go home. We're not able to hold him right now and know that the longer that is the case, the harder it's going to be for him to bond with us. We want to be able to hold him and love on him like any parent should with their child. And, we can't do that until surgery is taken care of and he starts to recover. Hopefully we will get even more specifics on Wednesday.

Monday, January 19

Two steps forward, three steps back…what is wrong with this picture? Yesterday was highly frustrating. Nothing can really prepare you for the emotional trauma of watching your child deteriorate and having the medical community say everything is fine. The reason they say he is fine medically is because he is stable. The reason we say he is deteriorating is because he is requiring more equipment to support him. Due to mounting frustration with this issue we started asking questions to anyone who would listen about what was happening.

Our questioning finally got us in touch with the neonatology fellow who was willing to spend some time talking with us. He said that even though he was requiring more support he felt Caden was very stable and would not deteriorate further at this point. We questioned him about the right lung which we were being told had a lot of fluid in it and his perspective was that it was either collapsed or compressed because of the hernia. Due to this belief he is scheduling a meeting between cardiothoracic and pediatric surgery so they can coordinate their efforts with a scheduled surgery. He did say the scenario has changed since Caden’s birth since he was so stable at birth. Apparently they had talked about just doing the coarc repair, discharging him and then do the diaphragm repair later. This is no longer a possibility due to the compromised lung function so he will have to be in the hospital until both repairs are complete.

So what does this mean for scheduling? Well, the only thing we know is that surgeries will now need to be coordinated and will need to happen before Caden is discharged. We do not have a date or a plan and this is very unnerving. In addition, because Caden is so stable he is not receiving any priority. The medical team calls this the silver lining. We call it the black hole. It is frustrating to think that your child has to actually get sick to the point of compromising his outcome just so he can get in for surgery. So we wait and we pray. The emotional stress is starting to manifest itself in physical ways. Carey finds it easy to cry at the drop of a hat and I no longer have much desire to eat. We hope to get an update from the neonatal team on Wednesday.

January 17 & 18

Saturday, was a pretty quiet day in terms of Caden's status. He continued to be stable yet breathing a little fast. My mom and Cheryl brought Kyler over in the morning and he actually asked to see Caden in the hospital while they were driving over. So, Greg and I took him in to see Caden before he ate lunch and had a nap. He was very sweet and gentle with him and even said “I love baby Caden.” Very cute!

Then, after Kyler's nap, I asked him if he wanted to see Caden again and he said he did. So, we went back over to the hospital and went into NICU again. This time, he sat in Greg's lap and wanted to touch Caden and inspect him a little closer. It was very cute. He ended up spending about 20 minutes in with him and was so good and sweet the whole time. It was adorable.

Saturday evening, a good friend of mine from long ago came down to visit. We had a nice time and she also got to see Caden briefly. Greg's parents also arrived in the evening. They were staying in a hotel locally and were going to keep Kyler overnight with them. That way Kyler wouldn't interrupt any sleep that Greg and I have the opportunity of getting.

Sunday morning, I continued my routine of getting up, pumping, and taking the shuttle to the hospital. When I got there, Caden's nurse updated me and said not too much had changed. So, I went to the cafeteria and ate breakfast before pumping again. When I went back to Caden's bed, his nurse told me he was having a little bit harder time. She had taken his blood gas levels and they weren't as good as they had been. And, his breathing was very rapid (as it has been for the past week) but it has maintained a very high rate and wasn't really coming down. So he's definitely starting to have a harder time.

Shortly after I talked with his nurse, the neonatal attending physician came in to give me an update. He said since Caden was having to work so hard, they were going to try to help him a bit and wanted to put him on CPAP (continuous positive airway pressure). This blows air pressure into his nose and helps keep the airways open. This would give him some “back pressure” in his lungs so they would be able to inflate a little more and not have to work so hard at breathing, therefore lowering his respiration rate. The attending also said that since Caden was doing a little worse, he was going to go over to CVICU and see if he could “stir the pot.” He was going to let them know that surgery should take place sooner as opposed to later. In some ways I was relieved by that because it means Caden might have surgery sooner. But it also means that Caden is not doing as well so that's not good.

I continued to sit with Caden for awhile and while I was there, a cardiac surgeon came in the room. This is the first time I have seen a cardiac surgeon in NICU. We've had plenty of cardiologists, but never a surgeon. I thought maybe he was coming to see Caden and get consent for surgery. I thought if the neonatology attending had gone over there to talk to them, it was a possibility. But, when he came by Caden's bed, I asked him if he was there to see him and he told he thought Caden was doing pretty well. I told him what the neonatologist had said about him having to work much harder and starting to “deteriorate.” The surgeon said he would let Dr. Reddy know that and he made a notation of it on his paperwork. I have no idea what will happen at this point, but I feel like there have been some changes and it might mean surgery could be soon. I hope so.

I left Caden for a little while and when I came back, they had put him on CPAP by then. He looks awful! But the neonatologist fellow I had talked to said that it made him look sicker than he really was so to keep that in mind. But to see your baby on this contraption is hard. And, the nurse told me they still needed to put a tube down his throat into his stomach. They want to do this in order to keep some of the air pressure out of the stomach. If it gets too full of air, it would put pressure on the liver which in turn could push the diaphragm up and the right lung which would defeat the purpose of doing the CPAP in the first place. So, the next time I see him, he will have even more tubes. But the positive side is that it appeared the CPAP was making a difference because his respiration rate had lowered already after being on for only a few minutes. The neonatology attending told me if they didn't get the result they needed from CPAP, they would probably intubate him. So we'll see what happens later this afternoon.

Greg went to visit Caden this afternoon and said he had the tube down his throat and that he was definitely more uncomfortable. He wasn't resting peacefully anymore and didn't seem to like the CPAP and tube. Can't say I blame him! The nurse talked to the neonatologist and apparently his being on CPAP does not make him more of a priority on the surgery list. And, she found out that there are surgeries scheduled for tomorrow and Caden is not one of them. So, we continue to wait.

I guess if Caden's lungs are dried out more tomorrow, they will take him off CPAP. And, then they'll let him breathe on his own again until his lungs build up more fluid and then put him on CPAP again if necessary. But if he has surgery first, they'll have to put him on a ventilator for that anyway. It's just hard to see your baby on that contraption. But it really has made a difference in his breathing so that is the most important thing.

Friday, January 16

Caden is one week old today! It's hard to believe because the past week has been such a blur for us. We visited him briefly in the morning and he was doing well. However, the new IV they put in his arm yesterday apparently was bad and they had to remove it. So now he has one in his foot. But otherwise, he was doing okay. In fact, his bilirubin had come down enough they took him off the phototherapy treatment. So that's nice, no more bright light and sunglasses. And, last night they gave him the shot for RSV and he will need to get the shot once/month until April.

This afternoon, Greg went on a bike ride and I rested for awhile before heading back to the hospital. I am trying to minimize my handling of Caden. But I am washing my hands thoroughly and making sure not to touch his hands or his face or breathe on him. So I am not holding him for now. Greg is still holding him though. And, we have tried to be there for his small feedings of milk during the day so we can give them to him. It makes us feel a little more involved in his care.

This evening when we were at the hospital, the neonatal nurse practitioner said Caden was breathing faster than they were comfortable with, and since they knew he had some fluid in his lungs, they were going to give him a dose of Lasix to see how he responded. If the Lasix doesn't help as much as they would like, the next step is to put him on a ventilator in order to help him breathe a little easier. They just don't want to overtax his little body unnecessarily, especially since he needs to be strong enough for surgery. So, we'll see what happens with that.

She also said that although we shouldn't quote her on this, because she really doesn't know, she wouldn't be surprised if Caden has surgery over the weekend. She said Dr. Reddy is known to do surgeries six or seven days a week and he often likes to do them on Sundays. So, we don't really know for sure, but if a bed were to open up in CVICU, there would be the chance that Caden would have surgery this weekend. It certainly would be nice to get it done with sooner as opposed to later. But we won't know until very soon before.

Greg went back to the hospital later tonight after the shift change and said that it appeared the Lasix was working. Caden was having more wet diapers and it appeared his respirations were down a little. The neonatal team has ordered another x-ray for tomorrow in order to check the lungs again and see if the Lasix are doing their job. It is unclear what information the x-ray is actually going to provide since we are already seeing evidence of the lasix working, but this seems to be par for the medical process. Check and double check. I guess it is good they are being diligent.

Our little miracle is definitely surprising the medical staff here at Lucile Packard Children's Hospital. Based on all the prenatal information they had, they all thought he would be much sicker than he is. We're so happy he is a week old and doing as well as he is. But it doesn't mean we still have a long road ahead. We will keep you posted on what happens.

A Day in the Life of NICU

Some of you may be wondering what it is like to have a baby in NICU. So I thought I would try to relate the realities of that experience. From the moment Caden was born, he was given an IV to “nourish” him with sugar water since he wasn't allowed to nurse. In addition, there are monitors/tubes/wires attached to him monitor respirations, blood pressure, pulse, etc. Then, once he was diagnosed with having the coarc, he was given a central line in through his belly button to give medication as well as TPN, “food” for him. So, at any given time, he has seven or eight (maybe more) tubes or wires connecting him to various pieces of equipment. And, in addition to that, he is currently undergoing phototherapy for his jaundice so he has to wear sunglasses to protect his eyes. And, this is with him doing well and being fairly stable! In addition to all this, because of the medication he is not very alert. He sleeps the majority of the time. Every once in awhile he will open his eyes for a minute or two and look around, but otherwise, he keeps them closed.

If we want to hold him, it can take several minutes for the nurse to turn off the light, take off the sunglasses, move all the necessary equipment close enough to one side of the bed so all the tubes and wires reach where we'll be sitting. Then she carefully picks him up, making sure not to pull on or remove any of the wires and transfers him to our arms. We get to hold him, but it's certainly not like being able to hold and love on a baby like we should be able to. We have to be so careful of everything attached to him, so it makes it a little impersonal. Then, when it's time to put him back in his bed, it's a reversal of all the above steps, sometimes taking the nurse longer to get everything back in order. Certainly not able to just go in and pick up your baby and snuggle them like we should be able to.

Anyway, we know he is in good hands and we are grateful for that. However, we are sad that we aren't able to love on him as we would like to. It's a challenging experience to say the least. But we are dealing with it the best we can. As a mother, it's awfully hard to not be able to pick up your baby whenever you want to. But when we are with him, we try to touch his skin as much as possible, whether it is caressing his arms and legs or stroking his chest. We talk to him as much as we can and Greg reads to him a lot. We want him to feel our presence and hear our voices since we can't connect with him as God intended.

Thursday, January 15

This morning I was so exhausted I could hardly drag myself out of bed. I think it's all catching up to me! Greg made it to the hospital in time to give Caden his next “feeding”. I didn't make it until after that though.

When I got to the hospital, Greg told me they had taken an x-ray of Caden's chest today to check the lungs and make sure there wasn't any fluid around his heart. But we hadn't heard what the results of that were yet.

Then, an opthamologist resident came in to put some drops in Caden's eyes and said she'd be back in a few hours to do an exam. The opthamology consult had been ordered because I guess it's not unusual for babies with multiple congenital defects to have problems with their eyes as well. When she came back later to check his eyes, she said everything looked great. Then, another opthamologist came in and did another exam to follow up and she agreed that his eyes were beautiful and there was nothing wrong with them. Great news for us!

While I was holding Caden, the x-ray tech came back and said they needed to get two more x-rays of Caden's chest. One from the front, and one from the side. So, they took those and when they were done, Greg took his turn holding Caden. We are still waiting to find out what the x-rays showed.

I was pretty wiped out today, so I came back to RMH to rest. I've been napping and pumping and pretty soon I'm going to run back over to the hospital and get something to eat. Then I'll return to my napping and pumping routine. Hopefully when I get up tomorrow I'll be feeling more spry. I have a touch of a sore throat and don't want to run the risk of passing anything on to Caden or any of the other babies in NICU. So I'm playing it safe for now. Please pray for me so that I don't have to spend too much time away from my baby! I already don't get to see him and hold him enough as it is.

After I came back to RMH, Emily called to check in with me to see how things were going. I gave her all the updates we had and mentioned to her I wished I had asked the cardiologist where Caden was in the “line-up” for surgery. She said she didn't know for sure, but she had another family she was working with in NICU whose baby needed heart surgery as well and they were told there was one other baby boy ahead of theirs for surgery. Emily thought that meant it was us. However, she didn't know that for sure, and there could certainly be other pediatric patients ahead of him in line as well. But it sounded like we were toward the top of the list. We shall see...

Later in the afternoon, we heard back about the x-rays. I guess there is a little fluid in Caden's lungs, but not a lot. However, it's enough that they might start him on Lasix in order to dry them out a little bit. And, they said today that his breathing was a little faster than it had been. He's been breathing faster than normal already. So, if that continues, it's possible they might put him on a ventilator just to help him breathe easier. So far he was doing okay but they were going to monitor him to see if that changed. In the meantime, they are going to give him a shot to help guard him against the RSV virus. It may not completely prevent the virus, but if a baby does get it after receiving the shot, it will greatly reduce the severity of it. Caden falls into a high risk category because of his heart defect as well as his diaphragm defect. So, after weighing the pros and cons, we felt this was definitely the way to go.

So, that's all for now. We'll see what tomorrow brings. It seems things are always changing. In the meantime, I could use your prayers that I don't get sick because otherwise I can't see my baby.

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.

Labor and Delivery Details

Yesterday was quite an adventure. What we thought would be a quick delivery turned into all day waiting game. We arrived at the hospital at 7:45 a.m. for our scheduled inducement. They got us set up in a room right away and went through all the preliminaries. They checked the cervix around 8:30 and it was 3 cm. The doctors were happy with this and they started the Pitocin (Pit) at 9:30 with one milliunit. They upped it to two milliunits at 10 a.m. and then went up by two milliunits every 30 minutes until she hit 8 milliunits. They held here because the baby's heart rate was dropping. At 12:15 p.m. they checked the cervix and it had progressed to 4-5 cm. Carey was adamant about them giving her the epidural before they broke her water so they got that set up about 12:45 p.m. At 1 p.m. They upped her Pit to 10 milliunits. Around 1:45 a new resident doctor came in to rupture the membranes and put in a monitoring device on the baby's head. That process did not go as planned and Caden's heart rate dropped so they stopped the Pit and gave Carey a shot of Trebutaline (Treb) to stop contractions. This all happened very fast and this was rather unnerving. Carey had Treb once when she was pregnant with Kyler and she did not react well to it. However, this was not something we got to make a choice about it just happened as a knee jerk reaction from the resident. This was a step backwards as it slowed the labor down. We got the Pit started back up around 2:30 p.m. and that was like starting over again because they started at one milliunit and then increased it to two after 15 minutes. After that they upped to by two milliunits every half hour until she hit 8 milliunits which they had established as Caden's threshold for the Pit. At 4:45 p.m. the chief resident came into check the cervix again and at that point she had dilated to 6 cm. The good thing about this was it was the same doctor that checked when we first came in so we had a good baseline. The Pit definitely started working again. At 5 p.m. Carey was feeling like the contractions were coming on stronger now and they were actually doing something. At 5:15 labor was in full force and Carey was in a great deal of pain. After two contractions, things did get a little stressful as Carey was pushing because as he was coming out the umbilical cord, which was wrapped around his neck twice, was cutting off the air supply. The doctor did tell Carey that she was going to give her one more push to get Caden out. At that point she did do an episiotomy and that along with Carey's valiant effort got Caden out in the nick of time. The episiotomy was necessary because Carey was not stretching like she should have been due to scar tissue that was left over from Kyler's birth. The doctor was so calm and collected through this trial that it made us feel like we had just the right person. Caden arrived screaming and this made us happy since it indicated a good set of lungs.

The Peds team took control at that point and got Caden all cleaned up. Caden seemed to be stable after they went through their routine so they brought him to mom and let her hold him for a couple minutes. Then I got to carry him to NICU where I stayed with him until nursing change of shift at 7 p.m. They kick all the families out at that point so the nurses can transition. I went back up at 7:30 and was with Caden at for the x-ray. The x-ray confirmed the diaphragm problems and indicated some abnormalities in the spine and ribs. Those abnormalities are nothing for us to worry about right now, but will be monitored going forward.

At this point Caden's status is good. He has been breathing on his own since he came out and his vital signs all look good. They have him hooked up to an IV for fluids and they have a tube down to his stomach that is sucking out what little mucus there is down there. They need to use this tube until he has surgery for the diaphragmatic hernia so they can keep the bowels clear. This helps to alleviate any addition pressure on the internal organs that could affect how the lungs function. We are able to hold him and touch him, which is a significant blessing we were not expecting.

We want to thank you all for your prayers. They played a significant role in how the delivery went. As I mentioned before we expected this to be a quick delivery and thought we would have a new son before noon. The delay in this case was providential. At 12:30 p.m. there was a change in the attending doctor. This was not a normal doctor rotation and the doctor who came on was not a regular here at Stanford. However, we believe this was the doctor we needed for the delivery. She has a history for being very calm and patient when it comes to stressful deliveries. We are almost certain that if she had not been there Carey would have been shipped to the OR for a c-section after her membrane was ruptured and Caden's heart rate dropped. That being said they did have us sign the consent for c-section. In addition, the doctor's were scheduled to change shift again at 5:30 which means that Carey went into labor at just the right time so that we could have the baby before that change of shift. Further when all this came together, the chief resident came into the room expecting to do the delivery not realizing the attending physician was in the room. After a brief exchange between the chief resident and the attending doctor it was determined that the attending would handle this and the chief resident left. We believe had this happened any other way it would have involved a c-section. This was confirmed by our nurse who after everything was said and done mentioned that the first attending physician that was on in the morning would most likely done a c-section in that situation.

We are blessed to have so many of you lifting us up in prayer. Though things do not always turn out like we expect we recognize that God is taking care of us at every step along the way.

The Stats

Baby Caden arrived at 5:37 p.m. He was 6 lbs. 7 oz. and 19 inches long. Baby is doing well and breathing on his own. There is still more story to follow, but one thing at a time.

Slow Progress

Labor has progressed slower than we had expected. The medical team is concerned about the Caden's heart rate dropping with contractions. I think we are victims of too much technology. Caden continues to recover naturally and sometimes it seems that the monitor is not picking things up as opposed to Caden not doing well. This process is not over yet so keep praying.

Scheduled to be Induced

Well, I am officially scheduled to be induced Friday morning, January 9. The doctor's office called yesterday afternoon to confirm the date/time. I am definitely ready. I am so uncomfortable and I honestly don't think there is enough room inside for Caden to grow anymore. He is digging into my ribs and taking up all the possible space available. So, I'm looking forward to Friday!

We had our last NST and doctor's appointments this morning. Everything looked good on the non-stress test. And, when we saw the doctor, she was able to answer some questions for us in regards to what to expect on Friday. I am hoping they will give me an epidural before they start the pitocin. I tried to explain that I think once the contractions really get going, it is going to go pretty fast and I don't want to miss getting an epidural. She said she was willing to talk to the anesthesiologist about it and try to get that for me, especially since I have already been having contractions and am dilated some also. That made me feel better. But we will see what happens on Friday.

We are supposed to call labor and delivery around 6:30 am to see if they will be ready for me to come in at 7:45 am. Hopefully they will be able to take me then and we can get going fairly quickly. Although I am not looking forward to the actual delivery process, I am anxious to meet Caden. We don't know what is going to happen with him once he is born, but we are assuming they will get him to NICU fairly quickly. Of course we will try to keep everyone updated as we are able. And, we will post pictures as soon as we can also.

Thank you so much for your prayers. The pregnancy is almost over, but our journey is not. We don't know what the next few days or weeks hold, but we know God will be with us and sustain us through whatever we face.