The Dealio.

So, we went for our six month check up today for Piper at BCCH. No big deal, as we did our last check up in November and did the works: echo, ECG, bloodwork and seeing both the cardiologist and the hematologist. We are pretty used to the scenario.

Usually, when they ask us, "how has Piper been doing", all we have to say is "fine". She really has been. No fevers, no wheezing or lethargy. She seems really normal. She's had the odd cough here and there, but nothing no other toddler hasn't had.

Anyways, our hematology visit was great. She got her blood taken (always a little stressful, and I still feel as though the blood lab in BCCH is the funniest unit in that hospital), and her neutrophils were up to 1.5! They are normally around 0.01 - 0.1. So, we finally have a real number! One that is actually in the healthy, normal range. 1.5 is still considered low, but safe. So we are excited about that. The hematologist doesn't think we are out of the woods by any means, but he says we'll do more bloodwork in three months and see where her levels are at then.

But... it looks like we'll certainly be doing bloodwork sooner than three months.

We left hematology feeling pretty good, and went straight to our cardio appointment (they are right down the hall from each other- like 30 steps). Piper loved playing with all the toys in the waiting room and was sad to have her weight and height taken, as usually when she is taken into a little room with a stranger like a nurse, she gets poked or prodded or ends up crying somehow. Its tough starting off our visit with bloodwork- it just sets her off, and she is just really upset for the rest of the visit. I think we'll fix that in future.

So, we decided that she was going to need some medazolam to help calm her down (a drug that takes away fear and anxiety). So once that sorta kicked in, we went into the echo room and she had a great, calm echo. The tech was great and so friendly and Piper loved watching the Backyardigans while she had the nice lady rub gooey stuff all over her chest and look at her heart with a probe-stick-thing.

I got to really watch this one, as Matt was with Piper on the bed. I have to reiterate, that this echocardiogram stuff is pretty amazing technology. I only recognize about 5% of what I see in that exam, but they can get such a clear and precise report on everything going on in that little heart of hers.

We were done in about 25 minutes and had the ECG lady come in with her cart and do that test. Again, pretty straight forward (they stick little stickers to her chest and then cords that read something going on with her rhythms - again, I get about 5% of that). By now, Piper is awake, but so floppy and drowsy. She really just looked drunk... the embarrassing kind of drunk when you think you're ok, but you really can't stand up or walk or talk right. Poor kid. But she was still perfectly cognitive of what was going on. She didn't want to be held or lie on your shoulder. That was kinda frustrating.

Then we were off to a room to wait to see the cardiologist. Luckily, we had brought our iPad, and we could keep her entertained while she sat on Matt's lap. Then she got a vicious case of the hiccups.

The cardiologist came in, asked "how has she been?" and asked about how things were going. He took a good listen to Pipers heart, as she was still a little dozy. He told us that her murmur was still really pronounced. (* earlier in the day, the cardio nurse had gotten both Matt and I to have a good listen to Piper's heart, too, and it is still really swooshy. Definitely no distinct lub-dub at all. Kinda like breathing through your teeth sound. She looked like she was thinking "no, it's not supposed to sound like that".*) He had to go look at the echo report in another room, and in a few minutes he came back and said we should really come and take a look at her echo.

I knew then that that didn't sound good. We followed him to another room and he pulled up the echo on the computer (yeah, the server for the facility must be gigantic, but it's amazing! Minutes after her echo was finished, the cardiologist could look at about 50 images [still and video] of what her heart was up to). He showed us one part of her heart, the right ventricle that pumps up into the pulmonary artery.

Apparently, there is a muscle growing around that valve that is growing faster than she is, and more than they would want. It is slowly making the opening more narrow, which is harder for the blood to pass through. At the last appointment they said the blood pressure in that ventricle was around 50% and has now risen to 80%. So that isn't good. The fact that the pressure is getting higher in there is aggravating that muscle and is causing it to grow a little faster than it should. Piper has very strong heart muscles :)

They are not concerned that this is a life-or-death thing, but the cardiologist was a little concerned that her pressures were up to 80% when she was calm and sedated. He was thinking of how high it could get if she was worked up or running really hard. It was then that he said "we're going to have to go back in and fix it". He called it a "re-do" surgery, and it would NOT be as intense as the last one. Not nearly as invasive, though it will still be open heart surgery. He said that the recovery time will most likely be very quick, like 1 day in the ICU, one day on the recovery floor and possibly home the next day. 3-4 days, opposed to her 7 days from her previous surgery. She spent 4 days in the ICU last time, so 4 days total would be great.

The cardiologist still needs to bring this case up to his team on Monday (May 9) and see what they think. We will get a call on Tuesday from his secretary and go from there. He said he would like to see this done before summer. Personally, I find that hard to believe, but I am sorta prepping in my mind for mid-summer, like June/July. I am really hoping its not too soon, as in May, but we won't know yet for a little while. And really, we won't know anything else until Tuesday.

Tuesday is going to be a bit of an intense day anyways. I go for my ultrasound (oh, we're pregnant, by the way!) at BC Women's and they'll also do an echo on my wee little baby to see if this baby has anything going on with it's heart that they should know about ahead of time.

So I'll get some pretty important news on both of my babies on the same day. Wowza.

I am not too worried about my unborn baby, as my chances are still pretty low of having another baby with a heart defect, but the medical people would really rather know these things ahead of time.

But for my big almost-two-year-old baby, I am a little bummed more than anything. I don't want her to have to go through all of that again. I know it was hard enough with a 10 month old, as she could wiggle and sit up and move really well, and didn't like having all those things plugged into her. I can't imagine with a 2 year old, trying to keep her calm and keep her little paws away from her IV etc. I get tired just thinking about it. Though I know Matt and I will be much better prepared this time around. We know pretty much exactly what to expect, and how we should treat ourselves and prepare for those surgery days. I do feel like we can be much more prepared 2nd time around, but still... it's kinda a grueling few days regardless. And there is always surprises.

So now we wait a little bit until this time next week and we'll know a little more. Maybe it's not as serious as we think, or maybe it's more. Maybe we'll get a surgery date, maybe just an approximate window of time. Who knows. I honestly feel that if this isn't urgent, they will push her back a little into the summer and won't rush anything. But I am assuming it's going to be this year, 2011. I had never actually thought that was a reality for this year at all. And maybe it hasn't really sunken in yet. That might take some time, or maybe it might take getting a surgery date. But it is really good to see her neutrophils up and in the right direction. That could be a big help if we have to do surgery again. Maybe she won't need any drugs before hand, and less interference in general.

Lots of unknowns still, it seems. But for now, we have a perfectly normal, healthy toddler who just slept off that medazolam for the last 3 hours (woke up at 6:30PM. Not good), so we might be up for a while still.

We're not worried, just not thrilled about going through this process again. But for now, we'll just take it one day at a time and go from there!