After we flew out of the Perinatologist's office we got in the car and started on our way to Illinois Masonic downtown for our next appointment. Bosses and parents had to be called to let them know there was a change of plans and neither of us would be making it in to the office for the rest of the day. I drove because A. I'm a faster driver (aka Mario Andretti) and time was of the essence and B. I find driving to be calming for me, so it was probably best overall.
One of the first things Brian and I both said and agreed on within those first few minutes was that no matter what the defect might be, we just want her to have a good fighting chance. To think that it could have been something fatal at that moment almost didn't compute with us. At least we were on the same page and we continued down the highway continuing to make calls to all relevant parties and let them know what we were up against and that we were seeking more information.
Once we finally got to Illinois Masonic, we sat once again (this has been quite the trend these days). In fact, we sat so long that the Peds Cardiologist actually called my name and asked me to go get lunch to kill some more time because she was running behind - although she did admit that she had ulterior motives as the food would energize the baby and probably get her to position herself better where her chest cavity would be in a friendlier ultrasound position. So fine, we went and grabbed lunch and despite the morning's chaos I ate and enjoyed it (for anyone who's curious - it was Eggplant Parmesan).
Eventually we made it back up to the office and they took me in relatively quickly. I had to have another ultrasound so we hung out there with another Radiologist Tech while she scanned me and took pictures of the baby. At one point, she even managed to get us a couple of pictures where Olivia was happily sucking her thumb while we were poking and proding her. Eventually Dr. Cuneo made her way in and started to review all the pictures from each angle before she started to talk. Essentially our baby did not have a functioning left ventricle; it was there but it had stopped developing many weeks prior to my 20 week ultrasound, and once it stopped working, there was nothing that was ever going to make it work again. That being said, she continued to talk relatively quickly before either of us could lose our lunch and explain that although this is a rare heart defect; there are treatments in the way of a 3-series surgery that starts with birth and end around age 2 or 3.
Scan over, we were ushered into a regular treatment room where she took a diagram of the heart and started to show us what the differences were between Olivia's heart and a regular heart. The condition had a name - it is Hypoplastic Left Heart Syndrome. I think either Brian or I (maybe both of us) were either in shock or disbelief based on our calm behavior because she felt the need to reiterate that this was a serious condition and one that meant a long road ahead of us and moreso for Olivia. We nodded and said that we understood, but a few hours earlier when we were looking at a fatal prognosis, this Left Heart thingy sounded like she at least had the fighting chance that we were both trying to manifest out of thin air.
She was great, she sat there answering our questions and most importantly assuring us that although the diagnosis was serious, most of these babies/kids lead normal healthy lives with great quality of life. Sigh, end of story, that right there gave me pretty much all the peace of mind that I needed to get me through the next couple of weeks. We left shortly thereafter with a game plan to get in touch with the leading Pediatric Cardio-thoracic surgeon, get an amniocentesis and start lining up our ducks regarding delivery options, etc. She even gave us her personal cell phone # in the event that we had any other questions or concerns that might come up in the following days. All in all we left with a much more positive attitude than we had arrived with earlier in the day.
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