Mixed Bag

We're on the train heading home after a very long day at CHOP. Overall it was a productive day with some good news, some discouraging news, and some uncertainty.

We arrived at 7:30am to finish up some paperwork before our echocardiogram at 8:00. The echo took about an hour and the tech was very nice. The baby was an in-between size for the test which meant the tech didn't have a transponder that worked best throughout, so she had to keep switching instruments. Overall the heart looked great which is excellent news. The tech thinks there may be a small hole, but she couldn't be sure. Either way this is pretty common and the doctor said it's likely that the hole will be resolved by our next ultrasound.

We went straight from the echo to the fetal MRI. This was not very fun for both mom and baby. The scan took about an hour because little miss fussy wouldn't hold still. I'll circle back to this later, but the bottom-line is that I'll probably have to have another MRI done in a few weeks.

From the MRI we went to meet with our coordinator Ellyn. She is our main point-of-contact and will facilitate all of our appointments and communication with the doctors. After a brief meeting with Ellyn we met with a genetic counselor to go over our family history. The counselor wasn't concerned with anything in our background and emphasized how having a clean amnio and microarray was a very good indicator of an isolated CDH.

Dave and I then had the opportunity to check out the cafeteria - it wasn't too bad!

After lunch we settled in for a two-hour sonogram where the tech (and for a few minutes, the radiologist) examined the baby from head-to-toe. Overall our gal was pretty cooperative, but she refused to show her face for more than a second.

Dave and I then went to a conference room where we met with our coordinator and three doctors to discuss the results of all of our tests. The good news as I mentioned is that the heart looks normal and that there were no other abnormalities present. The discouraging news is that the stomach, bowel, spleen, and the left lobe of the liver are in the chest cavity. Obviously this is a lot of "stuff," and any time the liver makes an appearance it tends to raise concern. The doctors threw out a bunch of numbers but basically said to ignore them since I'm only at 19 weeks, and it's too early to really know what everything means (hence the need for a future MRI). I return to CHOP in four weeks for another sonogram and for a meeting with a social worker, so we'll get a bit more information then when the baby's bigger. I will continue to go to CHOP every four weeks after that until I reach 34 weeks, then they'll want to see me on a weekly basis.

So, it was a productive day, but there are still many questions. As I mentioned before CDH is frustrating in that all of the tests and numbers mean very little since it all comes down to lung function (which doctors can't predict or measure). Therefore, we will just keep moving forward and hope for the best while holding on to all of the positive information we've received so far.

Thanks for all of the well-wishes that were sent our way today - we appreciate each and every one of them (and you!).