On Wednesday, November 19, Greg & I began our marathon day of appointments at Stanford by meeting with Dr. Reddy, the CardioThoracic Surgeon. Even though we had heard from Dr. Silverman on Tuesday that the heart looked completely normal, we wanted to touch base with Dr. Reddy in case he had any other input or concerns. When we first sat down in his office, he looked at us and started talking about all the heart defects our baby had. Greg & I both were stunned. We looked at each other and back at Dr. Reddy, trying to figure out what we were hearing. We were speechless briefly but as soon as we found our voices we told him that on Tuesday Dr. Silverman had said everything looked normal in the echo. Dr. Reddy said he hadn't spoken to Dr. Silverman so didn't realize there was such a significant change. I was glad when he had one of his assistants get Dr. Silverman on the phone while we were in his office so they could discuss it and we could all be on the same page.
After talking to Dr. Silverman, we asked Dr. Reddy what his confidence level was that there weren't any heart defects. He said he was 99.9% confident in Dr. Silverman's assessment but there is always a slight possibility that something small could be missed. However, he said the concern of there being an AV Canal problem was absolutely out of the question because that would not be missed, especially because they were specifically looking for it. In addition, Dr. Silverman had shown the echo to another one of his colleagues is the heart center who agreed completely with his assessment. So, yet another person agreeing there were no defects.
Dr. Reddy said there was a very remote possibility of a small defect but it would be relatively minor. And, if we didn't deliver at Stanford, the doctors could give Caden medication to keep the valve open and keep him stable and transfer him to Stanford if necessary. But he thought this was pretty unlikely based on the echo. He said he didn't think it would be a problem to deliver at Sutter Memorial in
Our next appointment was with Dr. Chueh, the Perinatologist. She, and another doctor, met with us briefly to discuss what they knew about our situation and whether or not we would be transferring to them for the remainder of our care. They seemed to think it was a good idea to go ahead and treat me as if I was going to be transferring there, just in case, but it didn't seem as likely now as it did in the beginning. Otherwise there was nothing extraordinary about our appointment with her.
After that, we had a break in the day and got some lunch in the hospital cafeteria. Then we went to our next appointment which was with the genetic counselor, Meg. When we met with her, she had all the information from the ultrasound, MRI, echo, etc. and was very happy for us. She thought we had received great news. So she wasn't sure our meeting that afternoon with the Neonatologist, Dr. Hintz, would be necessary, but we would go ahead and have it anyway, just in case. She was talking about how they weren't sure how things could look so different in the echo at Stanford compared to the reports they had received from our previous echos. She even seemed to think that it was possible that our Cardiologist could have made a mistake and seen something that wasn't there. However, Greg & I truly feel this isn't the case. There were four different doctors who did ultrasounds/echos and they all saw defects. There was most definitely something wrong with Caden's heart and now it was gone. But of course, they trust Dr. Silverman over any other Cardiologist, and for good reason. But I don't think that means the other doctors were all wrong.
When we were done talking with Meg, she got me in for my fetal non-stress (NST) test a little early so we weren't just killing time. That was nice to be able to just go from one thing to the next without waiting. The NST went well and Caden performed fantastically. In a baby under 32 weeks, they have less strict guidelines they are following, but Caden was performing well above normal and doing better than many babies over 32 weeks. So, that was nice to know. Definitely not in distress!
As soon as we were done with that, Meg paged Dr. Hintz, the Neonatologist, and she came up to consult with us. She started off by saying she wished all her consultations ended up being this way: having to talk about good news instead of bad news. She said they had no explanation for the change in the status of the heart. But Greg & I looked at each other and we certainly have an explanation and it has nothing to do with science or medicine. It is a miracle from God! Dr. Hintz said it was certainly good news for us that the heart turned out to be fine. Now we were only dealing with the congenital diaphragmatic hernia (CDH) which is a big deal all by itself. She said she had seen the results of the MRI and had talked to Dr. Barth, the Radiologist, and they both thought things looked really good. It appeared that the CDH was minor and that there was only a small portion of the liver in the chest cavity and that the right lung development looked pretty good. She did say, as did Dr. Albanese, that just because the lung looks normal doesn't necessarily mean it will function normally and that isn't something that can be determined until after birth. And, she also added something else in there which we didn't even know was a possibility. She said that there was a very small chance that the diaphragm wasn't actually herniated and there was no hole and that the liver could just be pushing up on the diaphragm causing it to bulge up into the chest cavity. This would be more great news for us. Of course, if that was the case, we don't know if there would be any other concerns in regards to the liver or why it was doing that in the first place. But, we are still praying for a miracle of complete healing.
Dr. Hintz took us on a tour of the NICU and gave us a lot of information about what to expect when Caden is born. She also said that she really felt it would be okay to deliver at Sutter Memorial based on the information we know now. But she said there is an interdisciplinary committee that is meeting on Friday, November 21 to discuss our case (among others) and make a recommendation on the best place to deliver. This committee includes everybody who has been involved in our case in any way, from the social worker to the pediatric surgeon and everyone in between. So if there is any concern about Caden's health, they will recommend delivering at Stanford, otherwise, they will recommend Sutter Memorial. Dr. Hintz said we could expect to hear from her or one of her colleagues that afternoon or first of next week for sure. Of course, if the echo at Stanford showed anything further in the heart, they would tell me and we would go there instead. So, it sounds like we can deliver at Sutter Memorial barring any unforseen changes.
The Social Worker who was assigned to our case met up with us while we were in NICU with Dr. Hintz. She just wanted to make sure that everybody understood what was going on and that we knew how much communication was going on behind the scenes between all the doctors to make sure that they could provide us with the best care. And, because we won't have an absolute decision about delivering at Sutter Memorial until after our echo on December 17, she said she would be sure to leave our name on the waiting list for Ronald McDonald House just in case we needed to go over there after all. She didn't want to risk taking me off the list and then having us need a spot there at the last minute because we would be back at the bottom of the list. So that is reassuring that we would still have that option on the off-chance we needed it.
We were able to finish with all our appointments earlier than expected because we were dealing with good news instead of bad news. It made the conversations go more quickly with not as much to worry about. But it was still nice to meet all the specialists because it just gave us more information to work with and better understanding of the process and what to expect.
1 comments:
Amazing! Such wonderful news:)
Post a Comment