Dealing.

I find myself concerned about Piper's health more these days. I really don't want to be, and I honestly feel like I don't need to be. But I am. I'm her mom. I guess it's my job.

Timing is everything, I guess. November never feels like a great month for me. Maybe I feel a little more hit by this new news just due to the timing.

If I am really honest with myself, I am secretly screaming inside that I don't want to do surgery again. Everevereverever again. As much as I glorify the experience we had, I don't want to do it again. I just don't (insert pouty face here).

I need to keep telling myself the same thing I keep telling other people: there is a chance this might not happen at all, and all of this will blow over.

I have to keep remembering that. But I know that we will always be a little worried now that something might come up. Before, we were pretty confident that this one time fix should have fixed everything, but I should know better. Never underestimate the power of that little heart of hers.

I am slowly and surely giving this up to God, but it's not as easy as all that. There is nothing I can do or not do. That's the best part and the worst part.

Matt is in his third week of work away on Pender Island and so far it's been pretty good. This has been the first week I have really been feeling alone, hence the gloomier thoughts, hence the moody personality (can I blame that for my bad spelling and slow typing speed, too?)

He brought home a huge bucket load of apples last week and we've made about 30+ litres of apple sauce, which has been great! Bonus. And he gets to work pretty much as many hours as a human body can take. Always fun.

Knowing that this is not permanent really helps. This is not a normal way to live a life. I have a new appreciation for those single moms out there. This is totally possible, and somedays, even easy. But this is not desirable. I can see an end in sight, and can focus on that.

Otherwise, I am really busy with work and doing my best to keep up. That balance is really feeling strained now that I really have to work to find extra time at home, between naptime/bedtime.

And a new feat for us all is going soother free! Well, I mean, for Piper of course, but we are all kinda journeying through it.

We have been sorta trying to get her off of her soother for a little while, by cutting it out of the daytime, reserving it only for naptime and bedtime and she was doing pretty well. Until something switched and she just needed it all day long for some reason.

Anyways, then something else happened. The pumpkin patch.

We went with a long lost friend of mine from high school (must check out her blog - such good stuff goes on there all the time!), and some time between sharing popcorn with this little monkey-boy on the hayride

and collecting her cute little pumpkin, her soother disappeared.

I am calling it divine providence. Whatever it was, it worked. She was mad for a few days, and nights and naptimes were a little trying for a while, but she got over it. She coped, and we are all surviving without her soother. And now that it's gone, I am so glad to be rid of it! One less thing to worry about. I am hoping this will help her to develop a few more of her words, too, which seem to be slow in coming, but I know every kid develops at their own pace. Right now, I think she has more signs than she does words.

She can sign : cat, dog, bird, please, poop, change, cheese, eat, milk, more, water, bath, hot.

She can say: yeah, no, up, mommy, dadda, all done (aaaah-daaa), hot, and lots of other words from foreign languages yet to be discovered.

Alas, this post is getting garbled and nonsensical. And I using words like nonsensical.

I should probably go to bed. No fear. All is well on this front, just processing lots of life things at the moment, but usually able to take it all in stride.

Funny odds.

Do you know that every child born has a 1/100th of a chance to be born with a heart defect?

Well, they do. In my mind, that is rather large. I understand why it happens, as the heart is one of the first things to develop in that wee little baby, and it is not a very easy process, so error tends to happen.

Our next baby (whenever that happens) will have an increased chance of 3/100 to be born with a heart defect. I can't speak for my babies babies, but I am assuming it will be higher still.

Not cool. Not fun. But all very fixable these days.

Today, when we were at BCCH, we were told that there is a 50% chance that Piper could have to have surgery again.

After an lengthy process to get to her echo, the results showed that there was still some muscle bundles in her right ventricle, which could eventually make her heart work harder than it needs to.

Settle down, now. The doctors are not worried in the slightest. Really, I could see it on their faces; calm as medical cucumbers. Apparently when the surgeon was in there operating, he could see these muscle bundles, as Piper had grown quite a good amount to compensate for her strange blood flow. He chose not to remove these ones because it would have been too much on her little heart to remove such a large mass of goods, as that would up her chances for failure. He believed there was a good chance that those bundles would dissolve or stretch on their own and possibly not cause any problems. It was worth the risk.

But now, after looking at her heart 8 months post-op, they see that those muscle bundles are still around and now we just wait to see what they do. It turns out that they change the pressure from the heart to the lungs, as one wants the pressure in the heart to be around 30 (don't know what kind of units?) and right now Piper's an over-pressurized amount of 40-50. That number is totally fine and they don't see any issues with that (Dr's exact words were "it's not trivial, but it's not major") , but if it were to go out higher, say to 100, then that would be something to worry about.

Yes, they said that there is a chance we could do this all over again. The repair would be quite straight forward and they would do it later in her life (I naturally assumed like at the 5 year mark? Just a guess), but it could happen. BUT it could also not happen, just as much. Like I said, 50/50. There is just as good a chance those muscle bundles will shrink away as her heart grows, or stretch out, giving her heart more room for good blood to be swooshing in and out of there.

Or, the muscle bundles grow and make it more and more work for Piper to breath, leading to shortness of breath during activities etc.

The doctors stressed that there was nothing to worry about, and even if the muscle bundles did grow, it might only be a shortness of breath issue, not a life-or-death issue.

I am trying my hardest to take the doctors advice and not worry, but, as all mothers know, you can't help but worry a little. A flurry of things flash before my eyes: the echo 6 months down the road, when Piper is almost 2. The meeting with the doctors telling us the news. Us going home with said news and dealing with what we've heard. I hate how my mind always flies to the worst scenario, but it does!

As of right now though, Piper is doing just fine. Really, and honestly. If you feel her heart with your hand, you can still feel a slight murmur (swooshy, frothy fluttering), and when you listen to it, you can still hear a distinct murmur, but the noise level doesn't really have anything to do with anything... but just saying, she does not have a lovely lub-dub heartbeat like you and me.

She was sedated for her echo which was the best idea ever. She never slept from it, but she was so much calmer, and kinda drunk (which is always funny, regardless of age).

Hematology had nothing new to tell us. Her neutrophils are up a tiny bit from 0.1 to 0.41!!! Wow! They should be somewhere around 7-8 I think, in a child this size. Yeah, she definitely still has this auto-immune neutropenia. Big time.

Our hematologist said that we don't really need to see him again for another 6 months (as did cardio... did I say that?), just with one blood test in three months done locally. He is really hoping to see something change around the 2 year mark, which is just before the next time we see him. I am not counting on much, though he did clearly say that it is very unlikely that this will be her normal. This is not normal, and she should grow out of it soon. Or else???

And also, that the fact that she has been sick for a while has nothing to do with her lack of neutrophils, but only her lymphocytes, which apparently are fine. So I will stop using that as an excuse for her being sick all the time. She is a toddler, it's just the way it is: always having a runny nose and some sort of cough.

Gosh, this is getting long.

Wrapping up! I will try to post a little more often, as it does sorta help this whole process... but for now, here are some pictures of Piper I am still unburying from the summer months.

Loves that free tricylcle... even when it tips over almost every time she plays on it.

Fun times at White Rock beach.

The infamous underwear snatcher. And yes, I have a ridiculous selection of undies, but Piper will try to put them all on her head. There is no point in organizing my drawer anymore because it brings her such joy destroying it :)