New news.

Yesterday I waited all day long to hear from the hematologist, and by dinner time I had given up, thinking, of course, he has gone home to his family and is eating his own dinner right now. Then, by the time I headed off to a Tupperware party (yes... another one), I figured on when I would call him the next day. I gave him until lunch time, then I would pester again. And when I curled into bed last night, ready to give myself away to sleep, it was actually kinda far from my mind.

But, lo! At 9:45pm, our phone rang.

Now, usually, when anyone calls after 9:30pm, it's my parents, and that is why I've set up a special ring for them, so at least we know (yes, Mom and Dad. You have a "special" ring). But, at 9:45pm, there was no special ring. So I kicked Matt out of bed faster and he caught the phone on it's fourth and final ring.

Our awesome hematologist was calling us at 9:45pm, from the hospital, to let us know what was up. How cool, and at the same moment, how serious can this be?

I had called the cardiology nurse earlier in the day to see what the results were and she said that the Hematologist would call us, and at her last word, "okay?", there was the slightest tone drop, which in my body-language reading skills implies "poor thing, more bad news". So, I picked up the slightest bit of that, so I wasn't expecting Piper's blood work to have gotten any better. At least I had that kinda confirmed during the day.

And true, her blood work that was taken on Tuesday from the lovely BCBioMed lady has not gotten any better, but is back down to 0.01 like when it was taken at the hospital.

So now what?

The hematologist laid out a few options, and I am starting to understand this whole new pack of medical words every time they are repeated.

He thinks,

a) Piper is fighting something at the moment, some sort of bacterial infection (even cutting teeth maybe?)

b) she has Autoimmune Neutropenia

Autoimmune Neutropenia kinda means (and read the link, as they describe it better, and very close to what the hematologist has been saying) that Piper is actually producing WBC's just fine, but there is something that is destroying her WBC's before they can be tested in blood work. So she can make them just fine, which is great, but they don't do much or get very far. Not so great.

The hematologist said that this might be something that will just ride itself out, in a few months to a year or so. He said that he will pass this on to the cardiologist and the surgeon and see how urgent they feel her surgery is and whether or not it needs to happen sooner or later.

If it is sooner, there is a drug called G-CSF that will help stimulate the production of WBC's so that she is stronger, but he won't give it to her unless he knows more about her blood, and specifically, her blood factory, so he will have to do a bone marrow test. This is only if the cardiologist and surgeon feel surgery needs to happen sooner. If not, I don't see why we wouldn't just wait it out and wait for it to correct itself.

For the bone marrow test, in a baby, they would need to use light anaesthesia, to keep her airway clear (not too sure what that means, but that is what he told us). With that bone marrow test done, he will know how much G-CSF to use during surgery. He did say that it isn't 100% that it will do what it should, but it is better than nothing.

G-CSF is the drug they give Chemo patients, which still scares me. I just hate being this close to all these oncological words (even if oncological isn't actually a word?).

So, this coming Monday, instead of going to my friendly, neighborhood BCBioMed, we have to go to BCCH again and there in the Heme/Onc clinic, they will do some more blood tests that are a bit more specific than the ones he originally ordered. But they will give him more information on what to do and where to go from here.

Yes, this means another hospital day, but he said it should be an in and out thing. Let's hope...

So many lovely people.

It never ceases to amaze me, that there are actually really great people out there. I mean, really great people.

We went to get Piper's blood taken down the road (after visiting Safeway to get a sale on yogurt!), and upon giving my papers from BCCH to the front desk lady at BCBioMed, she scanned down the paper and said "oh, my son had that", seeing Tetralogy of Fallot. I said "oh really! How is he now?" and she went on to say that he was doing mostly fine, though he has had to have a few more surgeries to fix his valve, but other than that, he is swell. We kinda chit-chatted back and forth, and she was just so encouraging, and even had the same hematologist as us, and knew the cardiology nurses well and the cardiologist and knew of the surgeon. It almost felt like coming home, just a little bit.

You know that feeling, when you are in a big group of new people and you suddenly discover someone with that common link to you: same last name, birth place, cultural heritage? And it is just that tiniest thread that holds you that fraction closer, but you are all of a sudden so much closer to them than to anyone else in that group. It was kinda like that. She knew exactly where I was at.

Next, she proceeded to ask me if I had heard of the Children's Heart Network (CHN). Well, no, I hadn't actually. She then told me how great it was to just connect with more people who have had the same thing happen to their kiddies and how they've coped or things of that sort. She quickly tore off a little yellow Post-It and wrote down the web address and handed it to me. Then, just wait for it, she pulled off another little yellow Post-It and wrote her phone number on it, saying, "if you've got any questions, just let me know".

Umm. Wow?

Apparently, she is part of the CHN and is a rep for the Fraser Valley. Such an amazing contact! She then worked up a standing working order card that says that we are coming in every week to have the same little test done and "put it in your wallet. Don't lose it". Ok.

I nearly cried a little when she gave me those Post-It's. I wanted to ask her a million questions at once, and hear everything she felt and went through and how things are now, but we did only have a few minutes. Though, resources are kinda invaluable, no? I will definitely be looking into the CHN more. They even have a mom's coffee meet up that happens every month! How cool is that?

Little Piper's blood was taken (that same lady came to help find a vein and draw blood - good thing, too. The dude who was geared to do it seemed a little hesitant and kept calling Piper a "he". He couldn't look at me in the eye either... not a good sign), which is never fun, but she found a vein nice and fast and out came lots of blood in their pretty purple-topped vial.

Done! Of course Piper cried, more so at first just because I had to hold her so tight and she had 2 other people hanging on to her wee little arm. Not a fan of being constrained. She was calmed down after and we were free to go.

So now, Piper is napping in the stroller in the front entrance and I am feeling 99% better for this little adventure. That remaining 1% is stored up in worry for those WBC's to multiply like crazy. Or even just a little.

A total of 7 teeth to date. Wowza.

Let's try this again.

Ok, so we are on the list again.

Lovely booking lady called today and thought it was a good idea to get Piper on the surgery list so that in case her blood gets much better, she will have a spot all booked up already.

She booked Piper for March 23rd. Even though that sounds like a ways away, to me, it sounds like no time at all. For a while, I was just living in this void of who-knows-when, and it wasn't a great place to be. Now I have something to look towards and count down, even though I know her blood might not get better in that time, at least there is something coming up on the horizon to plan towards.

Tomorrow we go to get her second weekly blood withdrawal. Luckily, we can do it at any BCBioMed, and there are 2 of them very close to me, so we can turn it into a nice walk or something like that. The cardiology nurses said that I can call them on Wednesday (or the day after the blood is taken) and they can let me know how the levels are looking. I am really, really wanting this whole WBC count thing to clear up, like it was just a bad dream and we can move ahead again. The surgery booking lady was great in that she really was sympathetic and completely understood that we don't really want to be having our baby poked frequently and that we do want to get surgery underway as soon as we are able. She did say that even if, say by March 23rd, her WBC count is still too low, and is being monitored and it finally goes up, she said she would get Piper in as soon as she possibly could. That makes me feel like she is really on my team and none of this is to just tick me off.

So we have an appointment with the hematologist on the 2nd of March, and then a Pre-Admission Clinic (PAC) on the 17th of March (which will mostly just be maybe some more blood tests and maybe an Echocardiogram, because we've done the rest of it: tour, meeting people etc...) and hopefully in for surgery on the 23rd of March. Done.

Again, I am not getting my hopes up too much, but I really, really would like to see her WBC count going up, even if its just a little at a time, but kinda like stocks; always heading upwards. If you are wanting something specific to pray for, that would be it :)

I just find a lot of this hard to believe sometimes because we have such a normal, healthy, strong baby. Today, she really pulled herself to standing with the help of her toy trunk, waved at her uncle Mark, pushed herself to standing on her own and has totally got the page-turning thing down with her books- and loves it! Like, she can't be sick, right? I can feel and hear her heart beat, and it is so obviously not normal, but I can't physically see or smell or touch her WBC's and so it is such a mystery to me. And there are no real signs that anything is wrong, in my eyes, anyways. I will just have to trust science I guess ("I only believe in science" - sorry, Nacho quote...).

Tonight we went down the street to watch the Olympic torch run past. It was almost kinda magical. I hate to sound corny, but it really was. I know there are a few opinions on the Olympics and they aren't all positive, but I really feel that anything that brings my neighbors out of their houses into the street to cheer for our country can't be all bad. I love that our world can celebrate together. That part is magical.

Loved watching all the people!

Anyways, there was lots of fanfare and we got some free little flaggies and Mark and Maria got some free Cokes and then we all went to McDonald's after to use our free Coke coupon. Yeah, we are all about the free Coke, apparently (and we got fries, too. Not free).

Right now, this is Piper's favorite book, from her auntie and uncle and her 5 cousins. Her auntie wanted to buy her something special on their trip to Tofino, so I mentioned that Piper loved anything orange (still holds true), and they found this book! It's so simple, but awesome. The little fish is a finger puppet, operated from the back, so the book kinda comes alive! Anyways, we read it about 4 times a day, and Piper usually flips all the pages, and goes back and forth and can really enjoy it, especially because the pages have big holes in them, so she can really grab them.

So if you are looking for a cool book for some kiddie, I highly recommend this one :) And so does Piper.

Progressing like crazy, baby!

These days, I sometimes look back and think of where we would be if Piper had had her surgery last Wednesday.

The "worst" would have been over, we would hopefully be out of the ICU and in our own room, and Piper would have been on her way to recovering already. Maybe I could be holding her already and be getting closer to thinking about going home.

Really, I shouldn't be melancholy at all, because I get to see my baby all the time, she is in great spirits, and we are home safe and sound. Her heart doesn't slow her down or make life more difficult in any way. I should be happy to have these moments of normalcy.

It's funny because even in these last few days, Piper has been making (what feels like) leaps and bounds towards being a bigger girl! She is starting to scoot a little bit, or at least realizes that when she sees something over there, she can somehow get to it. She will scoot or kinda wiggle forward on her belly, but this movement thing is happening! And she is saying "words" sometimes in the right instance, like when Matt comes home and she sees him she says "da-da" all excited. Hmmm... very likely to be a coincidence. And today, she signed a perfect "milk". Oh, I was so, so, so excited to reward that! Matt had gotten her out of bed and had her in the kitchen just holding her, when I heard him say "umm, you should probably get out here; she wants some milk". Ta-da! She did it again, and was excited to see me and away we went to get some much deserved milk. We'll see if she can repeat now, but that just melted my heart.

I love when we can communicate.

So, it's funny because had she gone in for surgery this week, we would have never seen any of there progressions. They would have come later, but we get to see them now! And that just makes my day. Surgery will come, but for now, I am ok with it staying at bay for a while.

Oh, and we had a great time at the pool on Friday! Piper was a little hesitant at first, but ended up having a pretty good time near the end. The morning was fairly quiet and the pools were nice and warm :) And so far, I haven't seen any sickness/infection come out of it. Good family fun.

I do treasure these moments, and right now, our life is just the way it is, and I love it.

ps. Going to Ikea now, to get some fabric for the bathroom valence, and to find a shower curtain! Crossing things off my list!

All over again...

I can't pretend to say that I am not a little choked about Piper's surgery day being changed. I really did feel ready in a lot of ways, and was really seeing this happening. My whole calendar and month of February was almost "booked off", thinking I would have a recovering baby. Now it's wide open again.

I have decided I can either be a grump about it, try to blame something or someone, or I can see this as a whole new batch of time to get my life in order and feel like I've done something.

I've already tried to think of some things that would be great to check off of my list, now that I have this new allotment of time:

- hem my 2 pairs of new jeans (and they are so lovely, I can't wait to wear them!)

- buy a shower curtain for the bathroom (harder than it sounds, ok)

- sew a valence for the bathroom (to match the shower curtain, of course)

- organize my bookshelf (and get rid of some books, and make space for some more)

I think that is all for now. None of those are too lofty. They are possible. I do best with goals being set and working towards them, so this will hopefully be rewarding.

We've decided to back off of the "bubble" a wee bit, in terms of cloistering Piper. We've got at least a month (and I honestly think it will easily be 2 months) until a possible surgery date, so we are going to take it easy in terms of being germaphobes. We are going to be smart (no licking of the skytrain poles), but not too anal. So this Friday, since Matt has it off, we are going to try out the pool! We haven't been in so long, fearing germs of all sorts, but we are going to give it a try! We've been a few times, and Piper does love the water, so I think this might be good for all of us. We'll try to go in the morning, so there won't be too many people there (to stick their little fingers in Piper's face) and maybe the chlorine will be fresher?

Either way, it's something we've been missing as we'd been working towards a surgery date, so now we are going to try it out again. I bought Piper a new swim suit the other day, now I just have to shave off my winter legs.

Is "postponed" the right word?

Let's get this over with fast: Piper is not having her surgery tomorrow.

Like I said yesterday, we were sent back to BCCH to re-do some blood work, so that is how our day started. We weren't all that excited to spend another day at the hospital, but were hoping it would just be quick.

So, we went back to the blood "collection" clinic (sounds very vampire-esque to me), which was even more of a gong show from yesterday: just overflowing with people, and babies melting down and to boot, the water cooler has some kind of serious spillage. Anyways, they finally got her in and instead of trying to poke her in either arm, they tried her heel. Just a sharp poke and then they just squeeze it out into a tube. Wow. Looked kinda old-school or something.

Anyways, they got it and we were sent off.

Next we went to the hematologist (blood dude/specialist), which is labelled "hematology/oncology center". Not cool to be in the oncology center (aka: cancer). They just happen to work together, as they often kinda go hand in hand, but still didn't like being there.

Just a heads up, Piper does NOT have any kind of cancer. Settle.

They happened to have the nicest waiting room thus far: really spacious and kid-oriented and lots of windows. And it was really quiet, which was actually great for a bit.

So we waited there for a while, waiting for the blood to get processed and sent away for results, and in the mean time, we saw the hematologist. He was an awesome guy who made us feel really great right away and was happy to meet Piper.

Then he started with a blank sheet of paper and asked for "a detailed history" of us, her and our families. Dang.

So he asked away, all sorts of questions and we answered them as best we could, and he filled up his blank sheet nicely. He was asking questions like "does anyone have a history with blood issues or illnesses or anything like that?" and we really couldn't think of anything outstanding, something genetic that could be passed down. His questions were quite serious though, and I started thinking "oh my... this is for real. We are sitting near the oncology clinic and he is asking serious questions. Brace yourself". It was nothing really of the sort. Not nearly as serious as cancer.

What Piper does have (or I should say, doesn't have) is a lack of a certain type of white blood cells, called neutrophils.

"Neutrophils are the most common leukocyte in vertebrate blood. These immune cells engulf damaged cells, microorganisms and other foreign pathogens by phagocytosis" (thanks Anna!) or translated, there are usually lots of them in us normally and these are the guys that hunt down bacteria and gobble them up, thus helping you fight bacteria, thus helping you get better faster.

The quantity per liter is usually around 4.0-6.0 (per liter of blood). From Piper's blood test yesterday, her count was 0.01, and today was 0.28. So, she was somewhat deficient.

Somewhat is a bit of an understatement. She has no bacteria fighting power. So, you can probably see what the hematologist and surgeon would think, too: "why on earth would be operate on a otherwise perfectly healthy baby if her chances of fighting off very potential bacteria is nill?". So they decided to wait on the surgery.

Now, this low WBC (white blood cell) count could be something genetic, or congenital, or something that comes and goes, or something she'll grow out of. They just don't know. I hate that part. All along, the doctors have always known everything, pretty much, and I have been so glad for that. Now, they are a little stumped.

So, they do what doctors do and study what stumps them. We will go for weekly blood tests for a month and see what those WBC's are doing, whether they go up or down or stay put or what. I was glad that even within a day, they had gone up some. The cardiology nurse said that the absolute minimum they would like to see is 1.0, but of course, the higher the better.

We have an appointment booked with the hematologist for a month away, and we'll see what Piper's blood tells us. They have said that yes, they could do the procedure, it is just that the risk is so much higher for infection, and in this kind of surgery (or any surgery, really), any upped chance of infection is not good.

The cardiology nurse said that the wonderful surgery booking lady will call within 6-8 weeks to re-book surgery and we'll go from there. If this low WBC count is just part of Piper, then so be it, and they will move ahead with the surgery anyways, and we just have to be careful, or if it is steadily going up, we might wait until it is in a good healthy range until surgery time.

The nurse did say "just keep doing what you've been doing" in regards to keeping Piper safe and healthy. Groan.

That part has not been easy. We need to be asking people all the time if they've been sick or been close to sick people, or we don't take Piper to highly peopled places. They are worried more about bacteria than viruses, but still, any aversion to sickness is good.

Again, we have a really happy baby otherwise. She doesn't seem sick, or weak or anything. She is progressing lovely and all of that. There is just so many unknowns that we can't see.

I am torn a little. I secretly love that she doesn't have to go through surgery tomorrow. I love that I can keep letting her eat as much as she wants and I don't have to worry about a cut-off time. I love that we don't have to go to the hospital tomorrow.

But I don't like that after all of this anticipation, we wait yet again. Still, we weren't bumped, per-se, but we were postponed until Piper is strong enough to really deal with a major surgery.

I can't help but think, yet again, that our life is going to be a little different again. I had really sorta planned this time and now those plans just have to change.

I think I can roll with that. I think. I'm not mad, and have no one to be mad at, but its just more waiting. But I feel I might be getting a tiny bit better at that now. Just maybe.

To relax, I am going to a highly anticipated Tupperware party tonight and might splurge a little. I am not sure what we'll do tomorrow. We can do anything now.

Yeah, we can do anything we want, pretty much. And I do kinda like that feeling.

Pre-Admission Day - 2 days left.

In a nut-shell, today was a pretty successful day. Nothing too crazy, nothing too new. All seems as I thought it would be.

We started off by seeing a few nurses, the physiotherapist, then the anaesthetist, then getting a tour of the ICU, then 3M, then some waiting rooms etc, then off for a chest x-ray and some blood work. All in all, we were out of there by 1:30pm (having arrived at 8:30am, it was not so bad).

Cute outfit that didn't last long... spent the rest of the day in a diaper and not much else ;)

Some nice things to note about today:

- everyone was very understanding and taking our case seriously, but not being too intense

- we got to see the spaces we would be in (which was really good, as my idea of the ICU was actually quite different than what I thought it was- all good), and became familiar with them

- we were shown a photo album of one baby, who had the same surgery and could really get an idea of what Piper might be looking like (hoses and all)

Some not so nice things about today:

- we had to "nap" Piper on the go, which was actually ok, just a little tiring for all of us

- we saw some pretty sad, sick little kiddies who make Piper's scenario look like a walk in the park

- found out we won't be able to hold Piper for about 3 days or so after surgery...

- Piper had to get some blood taken (2nd attempt worked), which she did not like (really, who does?), and upon coming home, we were called to say that we have to go back and re-do that part because it was contaminated or something...

So, we are home now, but yes, we will be going back tomorrow to re-do the most traumatic part of the day. Yeah, not fun. Hopefully it was just a mucky sample (it was a bit of a gong show in there), and there isn't any real complications.

I am still really glad we didn't have to meet the surgeon today, as that would have made it really intense. I got to ask all of my questions and feel like happy with all the answers.

So ready for a nap...

It was nice to think about Heading Home, as the cardiology nurse suggested that as soon as we are up on 3M, to start asking "what do we need to do to get this baby home?". In the book, they recommend asking for information in small installments, and writing it all down. Don't get the full low-down at once.

We'll need to know what kind of medication she will need, how to see signs of infection, or other problems, what kind of care does she need at home etc...

I already love thinking about taking her home, but it also kinda freaks me out. It was really great to see some pictures of a baby who was about 7 months when she had this surgery, and even from day 7 until day 13, there was a night-and-day difference. One day she looked kinda drained and off-color, whereas a few days later, she was kicking and smiling and looking like normal (minus a new pink scar).

Anyways, we'll be back at BCCH again tomorrow (not so impressed), and we'll see how that goes. We might end up spending a good portion of the week there, I guess.

Must make this one short as we are now going out to dinner with the fam (traditional Keg birthday dinner- it just gets better every year). But we still feel good about Wednesday.

Thanks for all the prayer and support for just getting through today! We felt it:)