Lily saw her doctor back here at home today, for her 9 month well child check and a discussion of Tuesday's appt.
Today she was 16 lbs 12 oz, so I'm willing to bet there's a difference between the CMH scales and the Maryville scales... no way did she gain 4 ounces in 3 days. So I'll say 16 lbs 10 oz and call it good. It's hard to measure a squirmy baby, but she's hanging out at the 70% for height, around 27.5-28 inches, and 10% for weight.
Dr. G seemed frustrated at CMH's lack of detail and timely response. I told him that they were extremely busy Tuesday and Dr. Simon basically flew in and flew out at our appt, she was in and gone in 6 minutes and said that "things looked great." No mention of the enlargement, right ventricle muscle issues, mitral valve leakage - nothing. No details. What had concerned me the most about Tuesday's appointment was that Dr. Simon had said something to the effect of "lily is getting better every time I see her." Which we all know isn't true, because August's appointment wasn't good! So I basically told Dr. G - look, she has no symptoms, I'm going to assume everything is okay. There was still a slight murmur in August and he didn't hear a murmur today, so that would indicate that her enlargement has shrank and her mitral valve isn't leaking anymore.
At this point, Dr. G opened up Lily's file and realized that he hadn't even gotten August's report back from CMH yet. The last thing he ever received from them was about her surgery in June. So they call down there to request that both it and Tuesday's reports be faxed immediately. I go home, I get a call in about an hour from Dr. G - they got August's report but not Tuesdays. The August report they received wasn't even signed off on yet. Brenda (dr g's nurse) said she was giving it 3-4 weeks, that they'd call me when they got it and if I hadn't heard from them within a month, to call Children's and check on the progress of it.
So everyone involved is frustrated. CMH took good care of Lily and I understand that they're is busy right now, but it's irresponsible to delay this kind of information that long. I think Dr. G and Brenda are ready to wash their hands of them - they even said that if (IF) anything else were to happen with Lily or if I were ever concerned/wanted a second opinion that they wouldn't hesitate to refer us to Children's Hospital in Omaha. Dr. G said that cardiology has never been this slow before.
I'm starting to wonder what those reports say, and what the echo REALLY looked like in August, as well as Tuesday. The information we were given in August was not good, but now it seems as if the whole thing is being downplayed. I took it to be something of concern, something to monitor, and obviously we were brought back in 2 months for a reason. I clearly remember Dr. Simon being "dissapointed" - her words - in Lily's echo in August. And then on Tuesday, it's as if they almost wondered what the heck we were doing back so soon.
I'm thrilled if Lily is doing great... I'm willing to just "let it be" at that and move on. But if I find out that I worried and obsessed unnecessarily for 2 months, or if CMH cut corners or messed up anywhere, I'm going to not be so happy.
Okay, off my soapbox.