The scan lasted about an hour and when the tech left she told me she wasn't able to get pictures of the aortic arch and the doctor may come in and try so I didn't move. Sure enough the doctor did come back in but was looking at something different. She was looking for the atrial septum. In her frustration of trying unsuccessfully to find the aortic arch she forgot to scan the atrial septum.

A little background in case you have forgotten.......

At the last appointment I asked specifically about the atrial septum. This is an important piece of the puzzle. Baby Brother needs his atrial septum to be open and floppy. An intact atrial septum is not good. But for him, his was open, floppy and wonderful. Giving the doctor no concern at all. The main concerns at the last appointment were cardiomegaly (an enlarging of his heart because it was 40% the size of his chest), pericardial effusion (fluid around the heart) and the "event" that lead to HLHS in our baby. All of these things indicated early signs of congestive heart failure. Hydrops Fetalis was also a concern with the fluid around his heart. I'm not sure I mentioned it in the last cardiologist post but I asked specifically about his aorta and if it had grown any. Dr. Lacey indicated since he has HLHS she wasn't expecting the aorta to grow because it's growth is based on the output from the left side and since his left side wasn't working then we shouldn't expect growth but since his aorta is currently 2.6 mm and they want at least 2 mm. then we are good to go.

Back to this appointment.....

Dr. Lacey said his mitral valve is bright. I'm not really sure what that means but she has said it at every appointment. I am making a note in my handy dandy notebook to ask what that means as I type this.

She measured his heart and he is currently measuring at 35% of his chest size and the fluid is very minimal. Minimal fluid also means minimal chances for Hydrops Fetalis. This is good news. We are nowhere near out of the woods for cardiomegaly, pericardial effusion and congestive heart failure but these improvements are GOOD! Yeah! Good news! Finally!

Then she dropped the hammer......

Her main concern now is his atrial septum. The doctors she spoke with at the board meeting/round table all seemed to focus on one thing. His atrial septum. Advising her to keep a close eye on it. So at this appointment she paid more attention to it and sees signs that his atrial septum has thickened. It is a valve that has been working overtime and instead of appearing floppy and open it is now presenting itself as thickened and not as mobile. This is a problem. A huge problem. This MUST be open. 

Another problem is elevated pressure on the lungs. There is no way to measure pressure to the lungs but from all the other things she is seeing on the sonogram she can infer elevated pressure to his lungs causing pulmonary hypertension. Jason and I need to prepare for Baby Brother to be born with "sick lungs".

So what does this mean? It means (I feel like I'm going to throw up as I type this!) as soon as Baby Brother comes out of my belly they will rush him to the NICU and place a breathing tube down his throat. Then they will sedate him, administer pain medicine and the IV medicine Prostaglandin (I think that's how you spell it) which is the medicine to keep open the ductus areteriosus. (I call it the ductul valve for ease) As soon as that's complete they will rush him to the Cath Lab for a catheterization to perform an atrial septostomy. Basically they will insert a balloon into the heart to open the atrial septum. This is extremely dangerous. 

This takes our case from a serious HLHS case to an extremely serious HLHS case. I feel like his chances diminish every time I walk into the cardiologist's office. 

Please pray for our little guy. I'm not even sure of what specifically to pray for at this point but just pray. Please.

PS ~ Nathan and Todd, I'm ready for that blessing. I'll be calling you soon.