Hospital Update

Things have been a bit crazy, sorry! We were in Boston on Friday and then had to come home and get ready for an onslaught of puppies. There were 14 dogs in my house Saturday night! We were down to 10 Sunday night, and now it's a manageable five. Ahhhh .....

No excuse for not updating on Annie's day at Children's, though. Sorry!

The short and sweet of it is that Annie's dimple is ... just a dimple! That's not an official report, of course, but what they told us unofficially after the MRI. As for the echo ... well, she hasn't leapt into perfect yet but we'll still take it. Her measurements were marginally worse, with one measurement now falling out of the normal range, but it could all be in the noise (as they say). I can't say it wasn't disappointing -- actually, incredibly hard -- to see those numbers plotted out further away from the median line than last time. It felt like a big letdown. I had so hoped that we would see another great leap in everything, but it wasn't to be. Still, compared to where she was ... we are still a long, long way off from that, and that's a good thing.

Dr. Smoot did tell us that it felt like the condition was telling us to keep paying attention to it. Yuck. I want to ignore it, forget it, move on ...! On the positive side, though, she didn't feel like we needed to see her again until March and that was nice to hear. I know that if she were concerned about the numbers in any way, we would be put on a much shorter leash and be back again before the end of the year.

And another really, really great thing (something I didn't really think about until we were all done): we now have nothing on the horizon that would require sedation!! Annie has entered the lovely age of the entertainable-by-video crowd. We have some wonderful videos featuring sign language (Signing Time -- they are terrific) and Annie loves them. And we love them because the signing has been a huge help in communicating with Annie -- entertaining and helpful, so they're win-win. Next stage will be the bribeable stage, something I have heard quite a bit from other parents on the cardiomyopathy list serve. I'm not looking forward to the negotiations when she's a teenager, that's for sure! (Swapping access to the car keys in exchange for taking meds and undergoing echos seems ... ironic? Counterproductive? The mind spins ....) And I should clarify that all of this assumes we won't have anything else from the ENT side of things that will require sedation. And who knows? But here's hoping!

The other short and sweet of it ... Annie is a professional patient. She sat on the bed in the prep room, put her finger out for the pulse ox band, put her arm out for the blood pressure cuff, and lifted up her shirt for the stethoscope. Sad, but adorable. After the prep, I was able to go into the scanning room with her (I played the "I gave birth to her" card when it came time to decide who was going back with her) and stay with her until she was asleep. (Every department is different, apparently. No happy meds beforehand this time, but a lovely gas that she was more than happy to breathe. EVERYONE comments on how cooperative and easygoing Annie is. Apparently, they weren't expecting her to go for the mask at all, but she did. Several deep breaths, and we were able to lay her down and she was out.

The not-so-sweet of it was that Annie's heart is doing well now ... so she has an appetite ... and she expects us to give her a bottle each and every time she demands one ... especially at 3:30am. Oh my gosh ... it was MISERABLE! She was sad and mad in turns, but both reactions were heartwrenching. We told her we didn't have any more milk and had to go to the store, but there was nothing that was going to console her. As a result, we were all awake from 4am on (including Jamie). It was quite a start to the day. I was so close to caving in and giving her a bottle and just skipping the whole thing .... Poor girlie. When she woke up in the recovery room, we were given the go-ahead to give her a bottle pretty quickly. She was so groggy that she hardly ate anything, so we started to put it away. She quickly grabbed it back and held it close to her. There was no way she was going to risk another milk shortage or bottle shortage or whatever had happened to keep her mean parents from giving her a bottle the night before.

As always, a day in Boston takes a village for us ... our village. Thank you, thank you, thank you Kate R. for getting up BEFORE the crack of dawn so we could drop Jamie off. And thank you for getting her to school, too. ("Where does she go to school? Oh yeah, here. Duh.") And the oft-traveled road of gratitude ... thank you Nikki, Hannah, and Parker for picking Jamie up at school and keeping her all afternoon! Scott and Annie and I came home and snuck in a nap before Scott picked Jamie up, making all of us much happier humans. Thank you!!! I don't know what we would do without the amazing friends and moms we have in our lives here in New Hampshire.

(Writer's Note: No puppies were injured in the making of the photos for this blog. That particular pup has gone on to a lovely home and suffered no injuries whatsoever as a result of Annie's exuberant puppy care.)