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.