Quick Update!

Point form!

• saw everyone we needed to today.
• everyone seemed happy with how Piper was, minus a small cough, but there isn't much they can do about that, especially wait, as she could be sick again in another month or so anyways.
• everything went relatively smooth, with help from my sister and the iPad.
• neutrophils are at 0.7, which is low, but they are deciding not to administer pre-emtive G-cSF this time. They might post-op, but only if there is a real need. She seems to produce neutrophils when she needs them, and otherwise, not at all.
• it is very likely that she could be home by the weekend. They have lots of new developments since her last surgery that are reducing hospital times and are improving recovery.
• surgery is still a go for Wednesday, just need to keep her healthy in the mean time. Had a minor scare with a cousin being sick around her, so we are going to play it safe tomorrow and just stay home together and think healthy thoughts :)
• went out for my birthday dinner with good friends and I gorged myself of Greek food. Good end to a busy day.
• Matt got off with a warning from a police officer for doing a U-Turn (ps. those are ALWAYS illegal. Always). The cop told him he owes me a $121 date now. I am going to hold him to it ;)

What a day, indeed!

Thanks for all your support and help this week. We are slowly making it, one bit at a time. Now we just really need prayer for health and safety for tonight and tomorrow and tomorrow night.

Over and out! Good night friends!

Happy Birthday, Piper baby!

Yesterday we all had our birthday party/ies. We all celebrate our birthdays within a week of each other, so we've decided to toss them all together into one big party.

This year for Piper, I decided to have a little more special party, just for her, in the morning with some of her friends. Yes, that meant we had tow parties in one day, but I figured it was going to be a crazy day, might as well get it all done at one shot! She had some of her bestest buddies over, all in their cutest outfits, and they played, coloured and ate little shapes of fruit and cheese. And then the cupcakes came out! Oooo-la-la! Big hit. I don't even want to try to know how many of those cupcakes got eaten by those little girls, but they certainly did some damage. Good damage, that tasted amazing on the way down ;)

I was so happy Piper could play with her friends all together in one day. They are all so sweet together. Even though, there could never be enough toys for them all to share, it was a really sweet time, and some of us moms even got a chance to visit a little bit.

There was a steady flow of friends and family throughout the day, and we really felt loved and really special :) The weather was so-so, with on and off rain, but we survived just fine.

Piper really enjoyed herself. She ate everything she could reach off the table (which meant a lot of cupcakes got sneaked!) and then some. We didn't monitor anything and just let her munch on whatever. It was her party after all. We tried to do the same, but ended up chatting with lots of the people who were over. Really, that was the best part. I was so happy to catch up and talk with some dear friends. I did manage to eat a decent number of cupcakes (thank goodness some of them were minis!) and even sat down from time to time. It did take me about an hour and half to finally eat my dinner, as I kept getting up to talk to people, but again, all worth while.

Now we are done with all the party festivities, we are slowly coming out of the muck of wrapping paper, dirty plates and toys and realizing that this upcoming week is going to be pretty intense. I am actually really glad we still had this party, as it was a perfect distraction and something to really focus on. And it was such a happy occasion. At some point during our party, Matt's dad lead a bunch of friends and family in prayer for Piper and for us in these next coming days. We continue to feel blessed and at peace with everything that is going on, and are really trusting that God's got the best plan in mind here, regardless of how crazy this all seems sometimes. And it really does feel crazy sometimes.

True, I do feel a little better this time around, knowing what to expect a little more, but I am still bracing myself for some hard times. This could be completely different than 14 months ago. Piper is so much older, for one. I am a little terrified of trying to keep her busy during recovery, as she tried to pull out her IV or oxygen or anything like that. Or wonder why it hurts when she wants to get up or why her throat is sore. I'm not looking forward to that time.

Otherwise, in these next few days, we don't have to do too much. Just a little more hospital prep, and mostly just cleaning our house up. And no, this isn't just party related, but in general. I am almost getting that nesting feeling of just wanting my house neat and tidy and CLEAN for when we are all home and recovering. I don't want to think about chores when we're home and I don't want to worry about how clean the floors are or when our bedsheets were last washed. It's those sorts of things I want to accomplish in the next little bit. We'll see how much I can manage. I still do want to wrap a few projects up for work, too, so that I don't have to think of them while we're getting Piper better. That might require me working Tuesday, which I don't feel great about, but it might need to happen so I can be a little more free during our hospital time and during recovery.

One never feels great asking for things, which is really too bad sometimes, but I totally feel that way. I do feel like most of the time I can handle all of this on my own just fine, and I probably could. But I know I have a great bunch of people who just want to help out, and so why would I try to carry this all on my own and possibly cause more damage than good? I might as well be specific and get help with exactly what our situation dictates.

This week, things that would be much appreciated would be:

• prayer: for Piper, for us, for the hospital staff (surgeon, anaesthetist, cardiologist, nurses etc).
• some yummy food: home-cooked comfort food is what feels best. Either things for when we get home or things we can heat up in the microwave at the hospital. The food selection at BCCH isn't stellar (Tim Hortons, Starbucks, Safeway), and all packaged food ends up tasting the same. Even just snacks would be so helpful for those ICU days.
• possibly some house help, either pre or post surgery. I know that is a lot to ask, but I know some people really want to do something, and this would make my heart feel a lot more at rest, just knowing the house will be welcoming and clean when we're all back together as a family.
• possibly help with childcare on Tuesday (May 17). That's either coming over to play with Piper while I work in the office, or keeping her at your place for a morning/afternoon. Any help would be great. I would only ask that you are feeling healthy and haven't had a fever/flu in the last few days (or been in close contact with somebody like that).

Again, it's kinda odd asking for help, but I can honestly say that any one of those things would be extremely helpful. Really.

Thank you all for coming out to our party this weekend! or for sending your love from afar. We so appreciated seeing all of you and had such a great time. What a way to celebrate!

New surgery date: May 18th.

Umm, yes, that is next week. Exactly. This time next week, Piper will be having her second open heart surgery. Oh man.

The reason for the switch is not a change in urgency, just a scheduling issue. The hospital knows that there will be a few babies born in the next few weeks that will have some pretty serious heart conditions that will need very intense care, so they are happy to do Piper's surgery before any of those "cases" are born.

Again, glad Piper is not one of those intense cases, but still. This date change is a bit of a shock on the system. And I am not thrilled about it. I have had to cancel one of the weddings I had booked for that weekend, which I know is never a good thing for the bride. Luckily, I have amazing clients who are so incredibly loving and supportive and understanding through it all. It breaks my heart having to miss this day with them, but I know that I will not be the best photographer I can for them, so I need to give them someone who can give them the most enjoyable wedding experience possible.

Also, luckily, I have amazing friends and support people. My good friend Vasia is helping me out with this one, and is taking charge and is going to make this slight bump in the road into a beautiful wedding for this amazing couple. Thank you Natalia and Andrew for being so great.

Now onto the reality that this is happening much sooner than we thought, and even at all! We are now entering the busiest weekend we have almost all year, and now with a pre-admission clinic to go to on Monday (also my birthday), to prep for surgery on Wednesday, the 18th of May.

I don't know if I am ready for any of this. But I do have cupcakes ordered from the oh-so-talented Buttercream Couture, so that is one more thing off of my plate. And they are going to look and taste great.

Oh boy, oh boy, oh boy. Here we go! It will be great to party this weekend with all of our favourite people, but this is not how I saw our May going at all.

Just trying to deal.

Baby #2 is "perfect".

I knew today was going to be a little hectic, and there was no way to really brace myself for it. I seem to function a little better when the house is in order and there is food in the fridge, but unfortunately today, we only had a full fridge. So, my day started off a little defeatist.

Anyways, by the time 2:30 rolled around, I was ready to go pick up Matt from work to head to BC Women's hospital for our ultrasound/echo. We've never been to the Women's side of the hospital, so that was new. But as soon as we were there, we saw Piper's cardiologist and our nurse and it immediately felt a little more like home.

The ultrasounds at Women's are great because they don't need your bladder to be inhumanely full, just for you to be hydrated the whole day. So I could pee when I needed to, even once I got there, and I just needed to keep drinking water. Lovely. No near-pants-peeing experiences.

The tech was great and got things going right away. At Women's, the tech has a screen that she can see, and then there is a screen at my feet that I can see the whole time, which is so nice. We see everything she sees all the time. And she tells us all sorts of stuff - all the time. It was such a change from some of the US we've had. She could tell us right away how things were looking and right away things looked positive. Then, within a few minutes, Piper's cardiologist was in there taking a look, too. He said "everything looks normal that I can tell", and reiterated that a few times. The tech agreed.

She continued to look at everything else, and we saw some delightful little toes, some legs and even a really good look at the face (though no profile). The spine, neck, kidneys, head all looked great.

Then, two other women doctors popped in and also took a look. They were cardiologist specialist for neonatal issues, helping with high risk pregnancies etc. They both took a look and agreed that this baby looked normal and "perfect", at that. Thank you for using that word! That is what every mother/parent wants to hear! I felt so good hearing that.

So, it looks like BCCH will not have a new patient this year! Just a repeat one...

Speaking of which, the surgery booking lady left a message for me wanting to see if she could change Piper's surgery date to the 18th of May. Ummmm... I am not sure if I am allowed to say "no" to these sorts of things. I was really hoping to get out of May and into June, when life isn't as crazy. Again, I don't think it's an urgency thing, just a booking preference thing, but I would really rather keep our old date, or at least try for the beginning of June. Ahk.

I will call her tomorrow morning and see what I can do. Nothing is for sure yet, except that this is happening, and the date could possibly be changed.

Otherwise, all the news today is good :)

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.