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 :)

Dates Booked

Just a note, this is where we were this time last year!! So crazy when I think about it.

Anyways, all is well in Piper-land. We measured her on the wall the other day, and she has almost grown 1/2 inch in a month! So something is working right ;)

We now have all sorts of dates booked, and as usual, they all happen around the same time.

November 2nd, we'll go for Piper's Cardiology appointment at 10:30, followed by her Hematology appointment at 12:30.

I am not too nervous or anything about those, as it feels kinda routine now. I am looking forward to a nice, normal echo and no surprises. She might have to be sedated for her echo this time, as last time it was a no go, due to her being a maniac. We'll see how it goes... it only involves a little bit of starving beforehand (fun!).

The cardio team has been great, and I look forward to seeing them again.

Then hematology, which for some reason, just makes me a tiny bit more nervous. I know I shouldn't be, but I am. There: I admit it. Piper will be almost 1 1/2 this time, which means her neutropenia could be totally cleared up, but I don't think it is. She has been sick pretty much constantly since September or earlier. I am sure all parents go through this with their kid: one cold after another after another, but I secretly worry that Piper just takes forever to get better because her blood is working extra hard to make things happen. Or nothing does happen.

This latest cough that she has, which is different than the one she got rid of just before Thanksgiving, is lingering and not changing. Just hanging around and sounding like she is dying. You get quite the looks from people when Piper hacks like that in public. Like I should be putting one of those masks on her or something. Yikes.

The strange thing is, Matt or I haven't been sick yet, or not the same sort of sick. Matt usually feels it slightly in his through maybe, but never a cough. And I just haven't been sick in, well, a long time (knock on wood!!). So that makes me wonder if it is just Piper holding onto that cold, after it's lost all of it's contagiousness, due to her inability to fight it.

We might never know. I am just hoping these appointments go well, which I am sure they will.

Next will be her 12 month shots which she is cleared to have. Nothing to worry about, but I am glad we got it checked out. Those happen later that week, on the 5th. Hooray. Then she'll have to be booked for her 18 month shots probably for the next month.

Otherwise, Piper is just like any other kid. Her heart never seems to slow her down, and her colour is always great. She eats awesome, no allergies or crazy food aversions, she is still interested in breast-feeding though also liked her cows milk.

Piper's favourite things lately:

* water: she often gets in the shower with me in the morning (I have no say in the matter) and ends the day getting into the tub with Matt.

* books: again, will often start and end her day reading, and any amounts of quick reads inbetween

* pencil crayons/pens/pencils: anything that she can make a mark on something, usually paper, but out magazines and some cookbooks have been victimized.

* dried fruit: those raisins in the little red box... don't tell the dentist.

* getting dressed: almost every day Piper will put somebodies clothes over her head. My underwear, her shirts, undershirts, headbands... anything. If it's got a whole in it, it's going around her neck. We have pulled off at least 11 layers of clothes from her at one time.

We wouldn't trade her for anything. We are so glad to be entering this next toddler phase and putting the drama of this year behind us. It feels good to be moving forward.

In other news, Matt has quit his job of machining cabinet doors and is currently taking a semi break from work-searching. He has some work lined up for the month of November, here and there, but he is just taking it easy. There was some emotional stress happening at his job that wasn't worth sticking around for, so we are taking a bit of a risk, stepping out of a job into a not-so-secure future. I can work more for my own business, but we will still be cutting back life costs a great deal. We'll see how we do. Already, even in this short amount of time, God has provided some great opportunities for us both. We have no reason to be worried in the slightest. And we are both secretly looking forward to this time to really be a family and consider the things that we truly need to function. It's going to be a good reflective time.

And here, are some pictures that a friend of mine, Winona, took of us in September, and I am finally sharing them. We both love how they turned out. Winona did a great job :) I wanted to get some good ones of Matt and I, as we celebrated our 5 year anniversary this July!

Enjoy!

Immun-not-izations?

Alas, all of this week I have been feeling like I should be calling the hospital to ask them something, or check on something, but I really don't have a great reason... Piper has had a nasty cough for over a month now, and now her nose is running somethin' fierce, but otherwise, all it well. She is eating, drinking, playing, growing just fine. I feel like the nurses would give me that "why are you calling us?" tone... So I haven't called.

Well, today, we went to get Pipers shots (late due to the measles outbreak while she was at BBCH... long story), which included measles and chicken pox. I got the awesome nurse I got last time (there are some really great ones out there!) and she ran through some of the "cautions" with me, and one was "does your child have a weakened immune system" due to something or other... and "has your child received blood or blood products in the last 12 months", both of which were a "ummm... yeah".

So the nurse wasn't exactly sure what to do with that, but quickly got on the phone with hematology at BCCH and was talking to our nurse over there discussing whether or not Piper should get this shot, la-la-la. They decided they needed to talk with the hematologist before they moved ahead, just for the unknown factor.

So, here we go for a little more waiting, but it's all for the best, really. It might just be us waiting for a little while longer until she gets those shots. And as usual, the nurse said "keep her away from people who are sick, especially with those illnesses". Yeah, I do my best.

So far Piper has shown such a good resilience to being in this world of sick people. But this residual cough that hasn't gone away is a bit tiresome. This might be her condition for now, that things just linger and don't get better when they really should. I am sure ready for them to get better, but I suppose it's not up to me.

Just last night, I was staring at her in awe just because I can't actually believe that there is anything wrong with her. It doesn't make sense. But there are tiny components I'll never be able to see that are amiss and not quite as they should be... and there is nothing I can do about it. Well, as the nurse pointed out yesterday, continuing to breastfeed Piper is the best defence I can offer her. So I secretly celebrate that small victory, and do feel as though I am doing something; something that no doctor can prescribe, and I only I can do.

Well, I guess this is just the latest update on wee little Piper. She has her next cardio/heme appointment in Oct/Nov sometime and we'll see how that goes. Otherwise, she is happy toddler, doing all the things she should: saying "no" to everything, running around like a crazy thing, climbing and falling and really starting to understand what is going on. She continues to be a delight.

Full-blown toddler.

Yes, Piper is officially a toddler. In so many ways. Yikes:

• she toddles around all over the places
• the talks to herself or tries talking to you
• she can eat on her own pretty well
• you can tell her to do something (simple) and she can do it (sometimes)
• she really enjoys playing
• she can tell you what she wants
• she is constantly recovering from a massive wipe-out with a nice bruise.

I officially like this age. She has started to demonstrate some "will", but so far, has been pretty good. I still think I've got it pretty lucky with an easy baby.

Piper is loving to dress up right now. Anything she can put on her head, or wear (anything. Including my underwear) she'll put it on. She is really trying to dress herself, too. This time, I wrapped this pashmina around her, thinking she would just kinda shake it off, but she toddled around with it loving it!

Lots of new sounds, and able to mimic some of the ones we do. She'll often now say something like "gankoo" after we give her something. Getting close! Yesterday Matt asked where her pants where and she put up two arms and said something like "go-no". Don't know! How cute.
Still a very happy eater
She will play independantly for a long time in her sandbox, and now has now figured out how to get out of there and get to where she wants to be!
Loves the dirt. It is a bit of a struggle keeping some things planted. We have a special pot of dirt she can just dig in. She loves it. Just pulls up clumps and lets it all drain through her fingers. Then does it again.

Like this. Tossing mud balls. Very fun.

Chomping on a drumstick, gravy everywhere, but so good. On beach days, you're allowed to do anything.

Her love of books has not waned at all. She'll start her day off with a story, and end it that way. She'll often bring a book to bed with her for a nap and look at the pictures for a while before tipping herself over to go to sleep.

Her love of the cat continues to be infinite. The cat is getting better with her, too. I think Piper has grasped the word "gentle", which is good. They are on much better terms. And Piper likes to drop some of her food to Foos... yeah. Real fun.

16 teeth total on this shark-baby. That last set of K-9's were a challenge, but they are all through. For whatever reason, all of Piper's teeth came early, but I feel like we might be done for a while (please Lord!). She has had some much better nights this last week, so maybe she is almost done teething for a while. I don't dare to hope.

And here was her first Laser sailboat ride. She liked most of it. She either wanted to sit right in the bottom, or have me help her stand on the bow. Hmmm... She does have to cutest lifejacket though, and she loves just wearing that around the house.

Health wise, Piper is a superstar. The last week+ she has been working on a bit of a cough and runny nose, but it never got too bad and she seemed to be able to fight it pretty well. It never turned into anything the hospital staff were telling us it might.

We were at hematology yesterday for a check-up and they thought everything looked ok. We never did get her white blood cells levels back in time, but I figured, if they haven't called me, it means that it was the same normal low, of something below zero. I am ok with zero. She has been fine with zero. What is the big deal? Maybe she is just gonna stay there.

The hematologist did mention that this should wear off in a couple months or maybe a year. When it doesn't, then they start looking into something else. I feel like this is her normal... but maybe normal isn't so good? We'll cross that bridge when we get there.

For now, we have a perfectly happy baby, and from the outside, her health is perfect. Her scar is healing up really well (the nurses in cardiology yesterday called it a zipper! So perfect!), and she is wearing those SPF shirts all the time and sunscreen. If she is happy, so am I.

Our favourite place on earth.

We made our annual Long Beach trip this year in June, which was the greatest idea we've had in a long time! It was not crowded at all, there were no crazy kids around, and the general feel of the place was not in the pumped-up summer mode yet. We might have to do that again.

It certainly helped that we had great weather, which is kinda a crap-shoot with our west coast, but we did ok!We found with a baby/toddler (left with a baby, came back with a toddler), we certainly were a little more run ragged and we experienced our favourite place in a new way. We found the same thing last year, but Piper was only a few months old, so this year, we could go a little faster and longer at things.

I am always amazed that we can make this trip (at least) once and year and everytime it is different. Like:

1. We got a beach front campsite (unheard of in the summer)

2. We almost lost our campsite (arrived late, forgot to check in the morning after)

3. Went to the "blowhole" (kinda dangerous, but came back alive!)

4. Had our first real "budget trip": spent under $350!!!

5. I finally got to use a wet suit in the water! (Thanks Harry/Dad)

6. Tried surfing with the two of us on a board

7. Went to church on the Sunday we were there (cute Anglican church, with about 8 people)

That is all I can think for now, but it was great, and new and fresh:) We spent most of our time cruising the beach, putting Piper in her rain suit and boots so she could scoot around and get really dirty, and eating. It was awesome.
Piper was a pretty good camper, though I can't express enough (that will be punny in one second!) how glad I was that Piper is still breastfeeding. I actually can't imagine doing that trip with a baby who needs a bottle. This way, Piper just slept between Matt and I when she needed me, I was right there. Sleeping in a tent was a little different for her, so some nights she needed to nurse more than others, but she was quickly getting the hang of living in a tent.

Funny story: for her naps, she would fall asleep somehow (either played out, or just cranky) and we could lay her down in her stroller and she could sleep for almost 2 hours. So the second day, we got her to sleep and then we quickly both jumped into our wetsuits (anyone who has put on a wetsuit knows that term is not quite appropriate) and headed down to the water with the stroller with sleeping babe.

We could skim board for a while, nice and close, check in on her now and then. She has always been a big fan of white noise, so the constant whoosh, whoosh of the waves was awesome!

Then we ventured out into the waves ourselves. Yes, we did leave our sleeping baby in the surf. The beach was so unpopulated, and we could see her the whole time. I am sure it is not he epitome of good parenting, but we tried it out, had our fun and came back to rescue our baby once the crows thought her little boots looked tasty.

Holidays will never quite be the same. But we still loved it. We got a little more tired, and technically we left a day early, but it was worth it. We had our fun, ate all our food and saw and did most things we wanted to.

I asked Matt at some point during the visit if he ever imagined that he would be taking his baby to Long Beach, after all the years he had been there as a child. He said he had never even fathomed it. And really, none of this journey we could have ever thought up in our wildest dreams. But wild it is, no?

Alas, we are glad to be home, and unpacked though still sorta recovering from the mess... And now we are officially a camping family! We most certainly need a bigger tent (as romantic as it is sleeping with your toddler in bed, she really does wiggle around and might have done much better in her playpen), but not a bigger car yet. Who knows what our next Long Beach trip will look like! I don't even both guessing because I know whatever happens, I will be blown away.

ps. On a side note, Hematology called and asked us to get some blood work done on Piper, just to keep checking her levels, and they came back as her neutrophils being lower than 0.1. Not all that strange to us, but we had the cardiologist-on-call and remind us specifically that if Piper shows any sign of infection, to bring her in right away. (Another reason to keep breastfeeding this baby! Breast milk provides antibodies that she can't get anywhere else, and since she has no bacteria fighters, I will keep providing those for her, as long as she'll take it)

The hematology nurse called a little later to remind us to not use Tylenol if we can help it, as it could mask a possible fever that Piper might have, and thus let any infection get further than it should. Bummer. I can see Piper's 13th tooth coming in. One of them nasty K9 teeth... not looking forward to it.

But so far, Piper seems more than ok, it is just the same constant monitoring we've always been doing, since day 1. She is eating well, drinking well and in a general normal mood.

I think Heme will call us to book a check-up appointment soon, maybe for next week. I'll let you know if there is anything new or interesting :) Have a great weekend!