Another day, another appointment. We met with the pediatric cardiologist this morning to see how our little guy's heart looks. First he absolutely has CDH there is no question.
Let me know say first that I am not one to complain about doctors, I understand they have a difficult job when it comes to talking to parents about their baby who is sick, but I am sorry the doctors we saw today I am not a fan of! There was an ultrasound tech who honestly needs to work on hiding her facial expressions when she is working and not saying things like"humm" or "not good"!!!! Then when I would ask her she would say oh nothing! Seriously! You are looking at my son's heart and your face says something is wrong but you wont say a word to me! Then there was a fellow in the room. I understand that we are at a teaching hospital and this is one reason we had originally decided to use Shands. I feel that teaching hospitals are extremely important and I think about how I am a student who has to learn someway and if these doctors don't learn now then when they are on their own they will be lost. All of the other residents or fellows or even med students I have worked with sine 2004 have been great! Today I did not like this guy! He was just as bad as the tech. When I finally ask him straight up what he was seeing he says "we have a long ways to go with this scan"!!!! Seriously!!!!!! I know that but that doesn't mean you can't tell me what you have seen so far. At this point I literally start to cry while I am laying there. Since we are in the peds unit they have a TV in the room and it is playing Finding Nemo (great movie) I literally stop paying attention to them and just watch the movie for a while. Our little guy was moving nonstop and I could feel him and I loved being able to watch him and feel him at the same time, but they were seriously ruining it. They never once showed us his face!!!! I know it was an appointment to look at is heart but seriously what would it have hurt them to let us see our little guy?? We are going through hell with all of these appointments and unknown and just seeing his sweet little face really helps. Then the main doctor comes in, and I already knew this but she was really young! Yes I know I am young too but she has been doing this like 3 years. I was kind of thinking ok good she is young she will be sweet and understanding etc! Wrong again! Did not like her anymore than the other two. She did the same thing as well with the "humm" comments. Finally after 2 hours of ultrasound where they have given us no results they ask me to get dressed and us go talk in a room. Let's just say I was not looking forward to this part at all: rooms for a chat have not previously ended well for us!
With a lot of babies with CDH their hearts do not develop properly because of the additional organs in the chest cavity. I have been very nervous about this appointment because if his heart is not developing or functioning correctly it just going to make his recovery a lot worse and his chances of survival decrease. We go into a room with the Dr., fellow, and the tech and they are like hold on and leave to go get another nurse! Again previous experience says this is bad news! Then the head doctor says "are we ready?" Seriously!!!! The fellow then says "so everything seems normal at this point!!!!" While I was beyond elated to hear this I wanted to just yell at them say what the heck could you not have said this over 2 hours ago!!!!! Then he proceeds to say but that doesn't mean it will be in a few weeks. He gets really negative at this point and says that as the other organs develop and grow his heart may not continue to develop and function properly. Then he says that on any fetal echo they can't see everything but that doesn't mean they are good or bad it is just a fact. So while he told us that everything looks "normal" at this point he was not reassuring in anyway! I understand they don't want us to get our hopes up and think that everything is going to be fine when he is born and then it goes worse when he is developing but they could have been a little bit positive!
They scheduled us for another appointment at 28 weeks to see how his heart looks then. Let's just say I am not excited at all for this appointment. We actually know the chief of peds cardio at the hospital and I am really considering trying to get into him. He has a bland personality and I would imagine his bedside manner isn't much better but hey he is the best at Shands and has probably done this almost as long as she has been alive! He has earned the right to not have a great bedside manner and if I am going to deal with someone without a great bedside manner they better be darn good! She and her team just had crappy bedside manner with very little experience not a good combination in my book!
Enough venting about them for now time to focus on our little guy again! He is very active and his little heart looks great at this point and that is a worth a PRAISE GOD! Please continue to pray for our little guy specifically for his heart, lungs, and that his liver will not be in his chest cavity (it makes everything worse all around).