Playing the "date"ing game.

We've done this all before: we get a call from the surgeons office telling us they have booked us for a surgery day and we get all excited and start looking forward to the day and then... it get's rescheduled or bumped around somewhat.

So, today, when we got a call from the surgeons office with a date for June 15th, I am deciding not to get too excited. It could easily be later in June or who knows when!

For now, we have a surgery date for Piper's second open heart surgery for the 15th of June, 2011 (I still have to say 2011 because I can hardly believe it myself). We'll have a pre-admin day one week before, where we meet all the staff: surgeon, cardio nurses/practicioners, anaesthetist, physiotherapist, and the list goes on. It's sorta an intense day, but we've done that part before, too. They will take an X-ray and draw some blood (oh joy), but no need for an echo, as she just had one done. I am hoping my sister can come with us again, so she can be another set of ears and can distract Piper if need be.

We will still hear from the hospital on Tuesday and see how everything looks, after they have all discussed Piper's case at conference rounds on Monday. There is always a chance things could change.

In the mean time, we are trying to plan a trip to Tofino for just after our pre-admin day and just before surgery, so we can all have a nice break before we lock in for a few days/weeks of recovery. But of course, we have to be careful to not let Piper get sick (fever) before surgery, as they would probably postpone it then.

I do really love having a date, though, even if it is just an approximate date. I can plan a little easier, and it really does look like perfect timing. I was a little glum today, just sorta slowly processing things in my head, and realizing that I was actually a little angry that we had to do this all again. But somehow, just getting a little more direction, and a little bit more of a plan just helped me focus that energy on the future, not on the unknown. God knew just what I needed - and I needed a plan :)

Our May is really full, but luckily, June is nice and slow. Hopefully, Piper can be back to her normal self by the time Canada day swings around and we can enjoy our last summer as family of three!

Onwards and upwards!

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!

One year ago.

I am kinda emotional, kinda somber, kinda amazed today.

Exactly one year ago, Piper went in for her open heart surgery. What a wild journey that all was. I am so glad it is all over and that we are looking upwards and onwards. It really does seem like SO long ago, not a mere 12 months.

I want this to be a special day for us as a family. Just a little bit. I don't know how this will change in the future, but today, I feel somewhat victorious, and that deserves celebrating. I know that even 25 years ago, this condition would have been a little scarier, so my doctor recently told me. Praise God that she was born when she was born. Just wow.

Every so often I get to feel her heart beat, and it is still pretty bubbly and there is still a definite murmur, but I know things are well under control. She'll get checked up on soon, and they'll tell us more, but I do really feel like we've been through the biggest, scariest ordeal.

Today, I will just take time and cuddle my little girl as often as I can and kiss her perfect little chest and feel her warm skin and love every moment of it.

Do click on this one, it gets bigger and you can see details a little better.

Been a while - Florida + Caribbean pics!

** There are lots of pictures in this post. Hang tight! **

Looking at my last entry, I am almost slapped my own face. Wow. It was for Christmas. Ahk. Sorta feeling like a bad person. Let's just say, life has been busy? Lame excuse or what?

Really, I felt like I started this blog to keep friends and family updated on Piper's health, and I suppose her health is doing really well... there isn't as much to talk about ;)

But really, life has been busy! I promise. Just to get it out of the way, health wise, Piper has been great. No health worries whatsoever. She had her blood taken in February and her neutrophils are still around 0.2, which is almost nothing. The hematology team at BCCH isn't too worried. We will have a cardio and heme check up for Piper on May 3rd. Piper will get her usual echo and ECG and then she'll get some blood work done. Really, it will be a pretty straight forward check-up.

We are hoping to see that in her heart, there has been a shrinking of the muscle bundles that were present last time. We want them to either shrink (and eventually disappear) or to grow at the same rate as her heart (and also, eventually disappear). I do really feel, even if this echo doesn't look all that promising, that everything from this point on will move so slow. They aren't going to do anything drastic, just keep watching it. I am fairly positive they will send us home and either see us again in six or 12 months.

As for her blood and autoimmune neutropenia, we are hoping to see it also slowly disappear in the next little while. The hematology team has always said that it tends to go away around 2 years old, and Piper will be 10 days shy of 2 at her next visit. Again, I have a feeling they are going to just keep an eye on it, as it's nothing too serious, and wait for it to go away. She has been able to cope through flu season and has fought off some serious colds, too. I am not too worried in that regard, but I would like to see what happens with this... I kinda don't want to even think about it anymore, even though it hardly ever effects our day to day lives.

Otherwise, Piper is a happy toddler, content to play on her own and with others and is a pretty good eater (though she would be happy to survive on cheese, yogourt and fruit for the rest of her life). She is trying lots of words, some in english, some in alien-speak, but we can communicate pretty well. She still uses her signs for lots of things, but has dropped some, like "cat" because she can pretty much say it now. Right now, her favourite things are:

• playing with her baby doll, and all it's accessories (oh my goodness! It's so cute)
• reading books, anywhere and everywhere
• getting a hold of anyones cell phone and figuring it out (within minutes she'll have the thing reconfigured... promise)
• trying to dress herself, or just pulling clothes out of her drawers and layering them on her head
• trying on shoes. Anybodies shoes.
• drawing with felts or pens (she has an incredible grip on that writing utensil, putting most first graders to shame!)
• eating breakfast with Daddy
• pestering the cat (she still loves the cat so much, and I even think the cat is slightly warming to her... slightly.
• riding in the car, and singing her own songs.
• pointing out things on the road: "dog, car, wow!"

We are amazed every day. Yup. Every single day. She is turning into such a great little kid. Oh man. I could go on and on, but I think you get the point ;)

In other news, Matt got a great new job, at a place in Surrey that makes stainless steel bakery equipment (I know, sounds random!). But the best part of the job is that he is in the shop about 50% of the time and on the road 50% of the time, fixing equipment all over the place, from North Van to Chilliwack. He loves the diversity and all the new people and especially something new. His employers seem really great, and so far, has been the best change for him. Seriously. He got part of his soul back. He starts at 8am, which is so awesome for our family. We can sometimes all have breakfast together! And he can even call and chat throughout the day when he is on a long drive.

I remember when he first saw the add on craigslist, he said, mouth hanging open, "this is my dream job". And it really does seem to be. Not the bakery equipment part, but the fact that he gets to trouble shoot and fix all sorts of crazy things, and then he gets to build things from scratch and meet new people and gets paid to drive around! He gets excited for work now. Such a good change for us all.

I have been working some more, too, and now send Piper to a friends daycare on Fridays, so I can have the whole day to myself to work, work, work. This has also been a good change for us, and I feel less stressed throughout the week. Things are starting to pick up and I feel as though I am going to shift my focus in the next little bit to bring in more families and kids. We'll see how it goes. It's kind of just an abstract thought right now, but I feel the winds of change a comin'! In a really good way. And nothing too crazy, don't worry.

But I really did want to share some of holiday pictures with you! In January, we went to Florida and the Caribbean for 2 weeks. It was amazing, as you can imagine. The trip of a lifetime.

In Florida, we went to Disneyworld (just Matt and I - even though we got rained on for a bit, it was so worth it!) for a day, and then lots of beach time as a family. We visited a few parts of West Palm beach, and generally took it really easy. We stayed with the family that I used to nanny for and it was such a nice time to just relax and take in a new place.

And here are photos from our Caribbean adventures. We stayed on our friends family boat, so we went with our good friends Sarah and Micheal (and their 2 year old boy), and Sarah's parents (who's boat it is). A very fun gang!

We hung around the British Virgin Islands and went to lots of different places. I can't tell you them all, but we got snorkel (first time ever!) and see lots of awesome sea creatures. We ate some local food and saw some awesome landmarks. We spent lots of time on the beach, or hiking or even a little bit of shopping. We went in the water every day, and went through so much sunscreen and still got burnt a little.

Piper did so awesome. She was a natural on the boat and was eventually brave enough to wander around on the bow even during mid-sail. It was such a perfect time to travel with her. I can't comment on all of these photos because they all have a story, but hopefully you'll get a bit of a taste of what our trip was like.