A Post Full of Good Stuff ... Impromptu Visit to Therapy to Bottles

We had an impromptu visit to the cardiologist yesterday. Annie seemed overly tired and has had a few fevers ... all perfectly normal for a six month old baby who is working on her first teeth. We're still learning when to raise a red flag, though, and lethargy is definitely something we are supposed to be looking out for. (Doesn't she look lethargic in the photo? HA!) I called our cardiologist's office here in town and spoke with the cardiologist covering for Dr. Johnson. She wanted to see Annie, and truth be told I was fine with that. It has been a month since her last echo and we don't have another one scheduled until early June ... but I like seeing her heart on that screen and at least knowing whether or not it's getting worse!

After the echo (where we thought it looked about the same, but there's really no telling for our untrained eyes!), the doc came in and went over everything going on. We answered question after question while anxiously waiting for her to say something -- anything -- about the echo. Every time we wait for echo results it's torturous. It was made even more torturous yesterday because we were in the exam room we were in last summer after the very first fetal echo -- where we were given the most devastating news of our lives. We haven't been to see this particular doctor since that initial diagnosis, so we have not had any occasion to be back in this exam room. (Although, to be honest, the whole clinic is full of memories for me. The other doc's exam room is where we were first told about Annie's cardiomyopathy, the echo room on the left was our first fetal echo, etc., etc., etc. Every time we go, the history of all of our visits there is forefront in my mind, but I'm sure that's how it goes for anyone who goes through medical crises.)

The doc eventually stopped asking questions and wanted to take a look at Annie. I finally blurted out a question about the echo. "Anything remarkable on the echo? Anything going on since last time????" And she said nothing was worse ... that actually, her shortening fraction (or SF, one of two ways used to evaluate the left ventricle's function) was BETTER than the last time she had an echo up here. Hooray! Cautiously, cautiously ... but hooray! The last time they evaluated it, it was 14%, while normal is generally considered to be in the 25-40% range. Yesterday's echo yielded two different shortening fractions, one was 21% and the other was 27%. The doc said she didn't quite believe the 27% given the size of Annie's LV (i.e. it is still globular and markedly dilated, more so than she would expect to see in a heart with a 27% SF), but she felt that the 21% SF was probably more accurate. We'll take it -- it's still much better than last time!

The downside was the request for blood. We were okay with it and not terribly surprised since she hasn't had any bloodwork done since she was in the hospital in mid-March. The doc was interested in Annie's digoxin dose, saying it was quite low for her weight. In any event, she wanted to do a complete blood count and test the digoxin levels in her blood. Unfortunately, it was the worst experience we've had with a blood draw and the worst screaming I have ever heard Annie doing, so I pulled the plug after (actually in the middle of) the second attempt. (They were fishing, fishing around in her arm, with the needle as far in as it would go -- UGH!) I'll touch base with Dr. Smoot in Boston today to see what she thinks we should do as far as the digoxin and repeating (or I should say attempting to repeat) the blood draw.

Oh, and did I mention that I felt Annie's first tooth popping through her gums for the first time WHILE she was having the echo done yesterday? Yes, I really think we just had a $1300 echo for a baby who is TEETHING and nothing more! (That's what you get, insurance, for refusing to pay for everything out-of-the-ordinary. I don't feel bad at all, especially since we got some seemingly good news out of it.) I'm sure the blood draw would have been in our future one way or another, so I don't think that's a wasted effort. Ok, I'm hoping it wasn't a wasted effort and that we didn't put her through that over teething! What are we, first time parents?!? No, just first time parents of a cardiac baby ....

Anyway, on to more good news. Annie looked phenomenal during her PT appointment this week! I couldn't believe how well she did. She sat up so straight and maintained it on her own for long periods. She's also doing fun stuff with her toys now, including operating cause-and-effect toys, and not just putting them directly into her mouth. She's really figuring them out and exploring them (then they go right in the mouth!). She has been on the move for the past few weeks, too -- she can roll across the living room without any problem at all. (Watch out puppies -- another one is on the go!) She's not sitting on her own yet, but she looks like she's on her way and that is much more than I would have said two weeks ago. Kelly, her PT, was impressed with how much she has changed in the past couple of weeks and kept saying "she's doing great" or "look at that."

Yet more good news. This baby SUCKS! Yes, that is more than great news in our house!! We don't know if her lower jaw is growing and that is helping her or what else could possibly have changed, except that she can definitely suck when she wants to. She rarely shows any signs of an appetite, so we don't get to see her really sucking very often. Every once in awhile, though, watch out! This morning she sucked down a bottle all by herself. That is terrific news since she needs that skill not just now (although we still squeeze the milk into her mouth the vast majority of the time) but as she begins to eat solid food.

Last bit of good news is the continued, amazing, overwhelming, and humbling support you all have shown in donating to Easter Seals and supporting us in the Walk With Me on June 7. I am not exaggerating when I say that I will be thinking of each and every one of you while we walk. Thank you, all! To date, we have raised close to $1400 for this incredible organization that is helping Annie defy the odds and surprise everyone with her strength and spirit.

Phew! Sorry for the long post. I think I'm finding that the blog posts are therapeutic, so I tend to go straight to writing when anything not-so-good is happening. I don't need the therapy as much when it's good news to report, so I hadn't written about some of this stuff yet. With the (cautiously, cautiously) good news with the echo yesterday, I just got going and lumped all of our good news in together. And while it may not be a necessary and therapeutic outlet, delivering good news has all kinds of rewards, too! :-)

Pics are from Annie's echo yesterday, sitting in her high chair (could it be helping her with her sitting skills? we're wondering) looking oh-so-tiny still, being loved by big sister, receiving therapy from the Easter Seals therapist, and her first trip to the beach.