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.