Thank goodness that's over!

Today started very early...for all of us. The preparation for today actually started last night. I got everything together for today...food, formula, flushes, diapers, meds, picked out her outfit to include a button down shirt so I wouldn't get her mad by pulling it over her head, etc. And Jay transferred some Mickey Mouse Clubhouse episodes and Care Bear movies to the ipad with the hope that this would calm her down somewhat. Jay had to get up at 2am to plow. I got up at 5 and my little friend was awake to greet me. I'm so glad that she didn't fall back to sleep because I did not want to have to wake her.

We left the house at 7am and stopped at Dunkin Donuts (of course). We arrived in Boston around 9 and the echo was scheduled for 10am. So we sat in the lobby (away from all the snots) while I fed Molly. I didn't want to give her any reason to get angry. We also made sure that she pooped last night because if she doesn't, she's not a pleasant child. So I gave her an extra dose of prune juice. She gets about 120ML on a regular day otherwise she has issues.

I received a call from the cardiology clinic yesterday asking me if I thought Molly would sit through an hour long echo. I chuckled and said "do I think she'll sit through an echo? No. I know she won't." I told the girl that I spoke to the cardiologist about not doing the sedated portion of the echo and he was OK with it because she was going to be under anesthesia in April and he could get an accurate echo then. I also told her that the problem with the echo is that she gets weighed first and gets mad, then they do the EKG and that sends her over the edge and by the time they are ready for the echo we can't get her back. I told her we were in Boston last week for Growth & Nutrition and asked if we could just use that weight and do the echo first so that's what we did and it worked out so much better than we ever could have expected. They gave us a minute to get the movie going, take off her shirt and let her get comfortable. At first she wouldn't lay down. Figures the time I want her to lay down she doesn't want to. I swear this kid lives to torture us. She finally laid down, the applied the gel and then the wand to her chest. She laid there so content, watching her movie, kicking her feet and even laughed a few times. Towards the end she started pushing the lady's hand off of her but we couldn't believe what we were seeing. Never did I think this is how our day was going to go. I take 800 million pictures of her a week but I don't bring my camera for the echo...figures, huh? The echo tech said that we could get her dressed and then the doctor told her she needed more images. I thought for sure that was going to be the end of her good mood but nope. She laid back down, watched TV and let her get her images.

Then it was back out to the waiting room to wait. We got called back again and they were going to do a 13 lead EKG. That's 13 stickers to put on and take off. She laid down and let them do it without a tear shed. We ended up waiting about 40 minutes for her cardiologist to come in to talk to us which is a lifetime when you're waiting for news about an echo which is the reason we came prepared with movies and books. He finally came in and said that everything looks great. Her heart function is great, the regurgitation on her mitral valve is mild which is essentially the same as the last time. He didn't even mention her VSD which we are assuming means that it's not there or it's so small. She has no narrowing of her valve either! All of the pressures in her heart are normal!!!! He said that she is amazing and has made a monkey out of a lot of doctors and every time that he sees her he is less concerned about her mitral valve. It's funny because we are always concerned with it :) She was in her paced rate (121) the entire time we were there. She was satting 100%. Her blood pressure was the best it's ever been - 86/67. We also asked about turning down the rate on her pacemaker. They turned it down to see what her own heart rate is and she sits about 107-109. They contacted the doctor in charge of her pacemaker and he said that it could be turned down to 100 but she doesn't have a normal sinus rhythm like we do. She goes in and out of what is called a junctional rhythm. Would she be OK being in junctional? Probably. Did we feel comfortable with it? Hell no! So we kept it at 121 for now and when she gets admitted for something else we'll do it down when she can be monitored for a little while instead of just sending us home.

So what does this mean for her? That means we get rid of her last diuretic!!!!!!! That means that we don't go back until May and we don't need to get an echo while she's under anesthesia in April and we may not need one in May either. We continue to keep her healthy and happy and enjoy her healing, healthy heart! This means now we have this echo behind us and move on to worrying about our next big decision (her intestine surgery) but for today I'm going to enjoy the news we got. I couldn't be more proud of this little girl if I tried. She is truly amazing!