Getting to the nitty-gritty- 20 days to go

What will happen at the day clinic?

Also known as the pre-admission clinic. This is the appointment we have for the 1st of February. They said on the phone to bank on about 3-4 hours, and in the book they say to count on about 4-6 hours. So, I am planning to be there for about 5 hours.

This means, that Piper will probably take 1-2 naps on us, via the sling, but she will be having some tests done throughout the day, too, so it won't be a great day. Up and down, go and wait, here and there.

Some things we'll do at the pre-admin clinic will be:

- make sure Piper is well enough for surgery

- get to tour the areas of the hospital we'll be in

- get in instructions on how long Piper should fast pre-surgery, and then "bowel preparation" (no idea what that entails!) and when to arrive the day of the surgery.

- give us info on the anaesthetic they will use during the surgery and their plans for sedation

- talk about recovery post-op.

I hope I will feel like my questions will get answered somewhere in there, and mostly, that its just not a completely overwhelming day. Its nice to have this time to mentally prepare for it.

They'll also probably run these tests on that day:

- chest X-ray

- ECG (electrocardiogram)

- bloodwork/analysis

- oxygen saturations (sats)

- echocardiogram

Piper has had all these tests done at least twice, if not more... like an X-ray. I am starting to wonder about that one. Hopefully after this, she won't need one for a while. I know these tests are really to just make sure they have super current info on everything that is going on, so there are no surprises on the 3rd.

The more I think about it, now I am glad that we go in on the Monday, have then have the entire Tuesday to recoup and then go in again for Wednesday for the surgery. We might all be pretty wiped after Monday. On that Monday, we do have a family dinner as well, which I also feel really good about. We'll leave Piper at home with a baby-sitter and just have a chance to just be together and be with some adults for the evening. We can maybe shake some of the day off, maybe have a glass of wine and just eat comfort food. We might be ready for that :)

This next section in the binder is dealing with the actual day of surgery. I've read this part a few times, and every time I read it, it makes more and more sense, yet I come out with more and more questions. How does that work?

How will we know when and where to go?

On that Monday they will tell us just where to go on the morning of the 3rd. It might be a completely different place than anywhere we've been before. Though, just like with her angiogram, I have a feeling we'll see about half a dozen waiting rooms before we actually get anywhere.

They also remind us here that there is still a chance that Piper's surgery date could be changed at any moment. We've been told that she is a "priority 3", which is low, which is good in that there is no rush, but it is also bad because we might get bumped around like crazy because nothing urgent has to happen.

What will happen before our child goes to the operating room?

Pretty much, we'll wait.

They'll put some EMLA cream (the stuff that numbs her skin) on her hand so that she doesn't feel the IV go in (thank you, thank you!). They mention she may be given some sedating medicine, but I am not sure if they will in her case. And then they say we wait until its time to take her to the surgical room. Some places let you go right in there with your child, but they didn't let us take her for her angiogram, so I don't see them letting us do that for her surgery either.

I am not even sure if I would like to see the inside of the operating room. Half of me does, because I am sure I would be amazed, but the other half of me would almost throw up and break down crying. I don't like the idea of her being some place I know nothing about. But maybe they don't let the parents in for the medical staff's sake, too. Maybe that stresses them out, too! I can imagine seeing some really nervous parents hand off their child to you, and having to watch that emotional departure just before you get to really serious work. For her angiogram, Piper just let the nice nurse carry her away to this mysterious room and I didn't see her again for a few hours.

Oh, that part might be harder this time. I can imagine myself being really brave and smiling, but I can also imagine myself passing out in the hallway and just moping the rest of the waiting period. I really want to be strong. I really do. I know it's ok to be afraid and to cry, but I do so want to be brave.

Only time will tell... Wow, this is getting more and more real each day.

Piper loves standing up and walking. Of course, not without help, but she is having such a hard time getting the crawling game going. She can sit and put her hands down and start to really pull herself forward, but her legs get in the way and she either tips on her head, or just gives up. It's up to her. We've tried helping, but she is pretty independent.

And now the car seat hunt is on! I hate this part. We are looking for the one that they go into after their infant seat (which she still fits, but her it's getting a little small) and they are in for a long time... Ahk. I hated stroller shopping, too. Luckily, our infant seat is lent to us, so we never had to shop for it :) These darn seats are so stinkin' expensive, too! Dang. And they are kinda one of those things I don't feel great buying second hand... we'll see how that changes.

No sick babies allowed. 22 days

What can we do to prepare our child for surgery?

Here, they mention that your child should have healthy teeth- no cavities etc. Dang. I sure hope Piper doesn't. I see it being nearly impossible as she hasn't really had anything sugary?

Speaking on the teeth front, she did cut her third tooth on Sunday, the top left one. It was a biggy. And it's next door neighbor is not far behind. It did require some serious rubbing from Daddy one morning to just get through that wee bit of skin, and her pain was seriously eased for a bit. Now we are just waiting for #4 and maybe we'll have a pleasant child again.

There are teeth #1 and #2. Such a grimace!

Anyways, to operate, they really do want a perfectly healthy baby. No coming in contact with sick people. I think I might sorta hibernate for the week prior, just to be sure. I feel like this week I've been getting out a bit more, almost as if it's a sort of "this might not happen again for a while". Piper has been on and off sick for a long time, but I feel like at the moment she is doing pretty well. She still has her cough, but I am almost just accepting that as part of her for now.

I forget, too, that they don't want a sick baby for the babies sake, but also for all the other kids' sakes. How terrible it would be to make a post-op kid sick! I wouldn't want to be responsible for that.

They do mention that surgery might have to be delayed if the child is sick with a cold. I am just really hoping for no sickness close to that date. Ahk. I can understand them bumping us around because of their timetable, but I don't want to be the one holding up the show.

Really, there is only so much I can do: wash our hands, keep away from sick people, stay out of enclosed spaces with lots of strangers and keep giving her her vitamin D. Let's keep that immune system strong!

In other news (geez, I really missed my calling as a news lady!), I've ordered our picture book from 2009, and it is due to come soon! I am so, so, so excited to get this one. It's a digitally printed photo book that I order through Apple (I've done it every year since we've been married, so this is our fourth book). This year, there are 86 pages. Wowza. I wonder why, eh? It has all of our pictures from the year, which are mostly Piper pictures. No shame in admitting that! Anyways, it's going to look so great and I can't wait to flip through it. You'll have to come over and take a peek :)

I do apologize for the text size going from normal to itty-bitty. It drives me crazy when I forget to change it. I think I need to reset something in my defaults...

Risky Business- 23 days to go

What are the risks of surgery?

This is the part that no one wants to hear about. The "what if" section.

Now, I've said it before, that I really am a glass-half-full kind of person, but when it comes to your own child, it's hard not to think of all the possible what-if's and explode them way out of proportion. I am doing my best to curb some of those thoughts, as my worrying doesn't make anything better.

Anyways, in this section, they reference the heart-lung machine (also called a "cardiopulmonary bypass). This is necessary for an open-heart surgery. This makes sense to me, to have to use this machine, as I would rather the surgeons were working on a heart that is still and than one that is moving and has jobs to do. The heart-lung machine (HLM) will essentially be Piper's heart for the duration of the surgery. They kinda just plug all of her vital parts into this machine and she ticks away.

Well, actually, I have NO idea how it actually works. I mean, I know it oxygenates Piper's blood for her, and basically does the things her heart would normally do, but what baffles my mind is how they hook the darn thing up! I don't imagine it's just as easy as plug-and-play. How do you start? This diagram gives me somewhat a better idea of what is going on, but I still don't really understand completely (will I ever? Maybe after my med degree? Pah.) I like how they use the image of the old woman... probably for her double by-pass surgery or something... I just think she is kinda old and cute.

I do know they use a drug to slow Piper's heart down (not sure if it stops it?) and then they can start hooking that up. I am really starting to appreciate those anesthetists. I can't even imagine. What a precise science.

Anyways, my book says that in general "complications after open-heart surgery are rare - they occur in about 1-3% of cases". That is a pretty good stat, but not great. 1% is still huge. In every baby born, there is a 1% chance they will have a heart defect, and my baby was that 1%.

They state that the most common complications are:

- bleeding post-surgery

- heart rhythm problems

- a permanent pacemaker may be needed

- infection, minor or severe

Now, if these are the risks, I think I can handle those. They are all quite fixable (though a pacemaker seems a bit over the top!). They also mention that some kids might have inflammation of the sac that surrounds the heart (pericardium) after surgery, or fluid around the heart and lungs. They they say that this is an inflammation, not an infection. It is called Post Pericardiotomy Syndrome (PPS), and there is a 2-30% chance of getting that after an open heart surgery. They do say that you just feel kinda ill when you have it, or maybe irritable, but nothing they can't fix with some aspirin or steroids.

Everything has a chance of this or that. Risk everywhere. It is all just a weighing game: do the pro's outweigh the con's? Like I've said in an earlier post, we could opt out of this surgery and just let Piper live with this heart defect. She would probably be fine well into adult hood (Dr said maybe 45?). But what kind of life would that be? In our circumstance, we are willing to take great risks at the chance of having an even greater life.

Will my child need blood products, and are they safe?:

Apparently, they will need to fill the tubing of the HLM with blood products (I love how they call it "products"... I think it just means "a stranger's blood"), or if they use something not as rich, then it reduces the oxygenation of the blood in the machine and is not great for baby.

They do mention that some parents are interested in giving their own blood (if it's a match?) or even, if the child is big enough, for them to donate their own blood for the operation. I kinda like those ideas. I mean, I know Piper isn't big enough to donate (well, at least I don't think so), but I think I would like to consider it if I were a match, and I think Matt would too.

Don't get me wrong, I trust blood-donor blood. I know there have been issues in the past, but I firmly believe that the blood they would be putting into a baby would have been tested for just about everything (see, glass half full). I just think it would be pretty cool for our blood to be flowing through her veins. I mean, as parents we give our kids everything we possibly can within our grasp, and why not try to give them our own life-blood? Our blood already flows through her anyways, why not keep it that way?

I think I will ask about that. Just to see... Otherwise, I do feel comfortable with a blood-donors blood (and I have to remember to thank everyone who does donate!)

Again, it is healthy to admit there are risks involved, but it is not healthy to dwell on those risks. Life is a risk. I can just remember all of the risks of getting pregnant, and you have to overcome those because you are more focused on the end goal. If you actually sat down and considered all the risks of bringing a child into this world, then no one would! It's crazy risky!

But just the same, we are focused on the end goal: a healthy girl who can live a life like anyone else, with nothing impeding her, knowing we've done everything we can to make her life as glorious as possible.

And if there is no risk in life, we would all be crawling at the walls out of boredom.

Here is a little video of Piper from 6-8 months (she'll be 8 months on Wednesday!). Hope you enjoy!

Weekend thoughts... 24 days left

Who should come to the meeting?:

Here, they are referencing the pre-admission meeting, on Feb 1st. This, I feel will be a pretty information-filled day. Hence, they suggest bringing someone else along. I mean, someone other than the mom and dad and child.

I know it's been handy the few times my sister has been able to come with us for various things, it's just a whole other brain to remember what has been said and to ask questions.

I find in these meetings at the hospital, especially with Piper now being bigger and more wiggly, the doctor can be talking, talking, talking and all I am thinking is "just hold still, wiggly girl! I can't hear anything!". Though the entire time I am nodding, giving the impression that I am hearing what is going on. Usually it helps having Matt around, as we can tag-team a bit more.

This whole foggy-brain business is something to get used to as a mother. It's like I can never fully clear my head, or I can't ever truly focus anymore.

So, we'll consider bringing someone to that meeting, even just as a Piper-sitting if not anything else. I feel it's kinda a lot to ask...

How should we prepare for the meeting?:

You know when people tell you to really prepare for a job interview, and you kinda look at them and think "how can I prepare for something like that, when I don't know what they could ask?". Anyways, thinking of really preparing for this meeting is a little more straightforward, but I still feel a little ambiguous. I often walk out from these sorts of things feeling like I've received a bucket-load of information and struggle to remember the most important stuff.

Anyways, in this binder, they list a lot of potential questions parents might want to ask. Here are some of the ones that I am not entirely clear on, or would like to hear more about:

- What is the best we can hope for? What is the worst that might happen?

- What are the most common complications and how often do they occur?

- What is the most serious complication and how often does it occur?

- What are the possible risks and complications of the anesthetic, if any?

I feel like the rest of my questions have been answered, and I really do feel pretty good about most parts of this. Though I am feeling now, that there is something tangible in the distance, the risks seem to creep into my thoughts more and more. The real physicality of it starts to set in. My baby will be cut and marked forever. There is risk involved, regardless of how positive everything/one is.

I've found that these thoughts only slow me down and don't get me feeling any better about anything. I've gotta push them out of my mind for now.

Anyways, this weekend has been pretty nice! I've gotten to go out with some girlfriends, and we've seen lots of family. We even got a walk at the beach in! Piper is still healthy, though really still working on some teeth which seem to always giver her some trouble at night. Oh well. At least she's pretty darn cute.

Going through the book... 26 days left.

Ok, so now since I do have a bunch of notice for Piper's surgery, I thought to go through the binder the hospital gave us thoroughly now. It's laid out nicely as questions, so I can really think through everything and think of some questions of my own.

I've chopped up the section "If your child needs surgery" into 25 chunks, so I can write a bit every day (or will try to!). This is for me just as much as you. I find when I talk about all of this with people, they think of just as many questions as I have, and I don't know all the answers either. So this way, I can hopefully get everything covered. Here we go!

Will we get to meet the surgical team?:

This one I know the answer to already, and yes, we will. On the Monday (Feb 1), for the pre-op meeting, we will meet all of the staff that will be operating on and with Piper. I hope this meeting with be helpful. I hate the mystery of passing off my baby and not really knowing who she is with and what they are doing. This is meant to dispel some of that so we all feel a bit more comfortable.

At this meeting we will all go over why they are performing this surgery, the risks and benefits, what the procedure involves and how long the hospital stay will be.

This will be the time when we will sign some papers. Eek. What will they say? Will there be a part for liability and an "oups" portion? Will I be signing away Piper's life to the hands of these, though highly trained and skilled people, they are still just people and fallible? Will there be a part that says "in the case of accidental death..."? I can't even really go there. I really can't think of that. I have to admit the chance is there, but I can not focus on that. That is where the next part comes in:

What is an "informed consent"?:

This is admitting we know and understand the risks involved and that we understand the reason for the surgery and that we agree to have the surgery done.

I hope this isn't too much emotionally. I have no idea. I vaguely remember signing something during labour, maybe for an epideral? but that was so strange and foggy and my mind wasn't really even on this planet. This time we will need to fully read everything, looking out for anything that we don't understand.

I know the hospital/surgeons aren't trying to hood-wink us with anything, I do just want to feel as though I am well informed, hence, wanting to give my full consent.

The only part that worries me here, is that if anything negative were to happen, I might feel as though I let it. I know my options are great otherwise, but I might still end up feeling responsible. This too, I have to give up and just know that God has much steadier hands than those surgeons, anesthetists and nurses.

Ok. So the countdown begins.

Piper got shot #2 for her RSV and it went pretty well. This was the first time she cried a little before they actually poked her. That part is a little sad. Otherwise, she recovered really well, nice and fast. She's had no reaction to the shots, which is great. And every time we go in there and see all the other sick babies, I am reminded of how good we have it. She has no ventilator, or no IV strapped on or no deformation. Really, she is perfect. They are just trying to make her even more so.

We've got a DATE!

Ok, so it's almost 12pm and I am still in my jammies, and I just ate breakfast. Yes, it's been one of those mornings. Busy.

I was awoken at 9:15am by the phone ringing (note: I am not usually sleeping still at this time, but Piper was playing nicely in her bed, so was taking whatever sleep I could get!). In my head I figured it was Matt calling, as it was his break time, so I let it ring and tried to call Matt on my cell phone (the phone that is by my bed. I was not up for bolting out of bed, no glasses on, almost passing out due to the blood-rush in my head and slipping on the laundry, then officially passing out. No. I let it ring.)

Calling Matt, he told me that he didn't try to call, so I figured now was a good time to get out of bed. Seeing on the call display it was "CHLDRN&WMEN HLT", I knew that someone from the BCCH had called. I checked the messages and the surgery booking lady left a message to call her back!

Now, I have played out this scenario in my head a few times. This was nothing like how I thought it would go. I hadn't talked to anyone much yet in the day, so I still had the morning voice, I was in my jammies, no breakfast in my tummy and my baby was running out of happy play time. Oh well.

I called her back right away and she told me that they had an immediate opening for a surgery date on the 12th of January.

What?? That is next Tuesday! Now, don't get excited yet, ok? The story goes on.

Ok, so she gets me all pumped for this surgery to happen on this coming Tuesday, and keeps telling me that it is nothing that has changed in Piper's status, it was just that a spot became open and her name came up and she was going to see if she could fill it. She was even calling other families already, but none of them picked up either (everyone was sleeping in today!).

I take down lots of notes and listen to everything she says, as my emotional-meter is going up and down and sideways. I'm on the verge of crying and laughing and peeing my pants.

She hangs up and I sit there and take a deep and kinda shaky breath. This was seeming crazy! For this time next week my baby could be recovering from an open-heart surgery? Yikes.

So I promptly start calling all the important people, still with this mix of emotions: ecstatic, scared, worried, impatient, nervous...

Anyways, as I am talking with my mother-in-law, I get a call from "CHLDRN&WMEN HLT", so I took it. It was the surgery booking lady telling me that there has been an emergency surgery that needs to have Piper's spot and bump- we go. She did give us a date of February 3rd, though, which helps.

That was just such a crazy ride, for all 75 minutes that it was. For a little while, my baby was going in for surgery so soon, and life was looking kinda hectic, but things were rolling and we'd be all done well before February, and then - bump- slow back down.

Really, I was happy to not have to wait so long and have this ball rolling so quickly; it would give me less time to worry and think about it too much. But even now, having more than 3 weeks to prep is still good. We can really plan out a few more things, and feel a little more in control of this whole hoop-di-la. It's just really hard having everything coming true for an instant and then, it's like reality kicks you in the gut and says "just kidding... you have to wait like the rest of the world". Right.

That is it, though. I do need to wait, and waiting is good in this instance and I can get a better grip on things.

Another dose of reality is that this bumping thing could happen again, and again and again. So let's say that there is a tentative surgery date of Feb 3rd. You know, just like next time I am due to have a baby, I am automatically tacking on an extra 2 weeks onto my "due" date, and not getting all caught up in the lateness of things, or the nothing-is-happening-on-time-ness. Bah.

I am deciding to just roll with it. That is my only option now anyways. This is a whole other month for Piper to get bigger and stronger and braver. Those are all good things. The surgery booking lady did say that Piper was a "priority 3", which I am assuming is the lowest, that is what the doctor told us, so there is no need for an emergency to rush in.

Half of me wishes I would have just continued sleeping in this morning. Then I wouldn't know what I could have had, and I might have still gotten a call telling us that Feb 3rd is "the" day, and I could really look forward to it without grunting "well, it was supposed to be sooner". (but still, I am so glad that it is not my baby who needs to be rushed into the OR with a surgery that needs to happen pronto... I think that would be more stressful than having my schedule look a little more messy due to some dates being scratches out) Boo-hooey. I should be glad that we finally have a day to count down to and that yes, this ball really is rolling and thing are happening.

And really... I am. God's giving us everything we need in His timing. I've just got to take a big breath and give it all up.

And don't get my wrong about the surgery-booking-lady (she does have a name, I just don't know how I feel about sharing their names with every body? Their privacy? I don't know...) is a lovely lady! She probably has the best and worst job ever. She does it with grace and I hold nothing against her... just in case it sounded like I did...

So the countdown is on. For now.

We go in February 1st (Monday) at 8:30am for a pre-op run-down of how things will go, and that appointment is about 3-4 hours and we meet the nurses and the anesthetist and the surgeon etc. And then on the 3rd (Wednesday), in the morning for the real dealio.

Here we go! I am not looking forward to this part of the adventure, but I suppose it is a necessary evil.

No date, as of yet

I've had a few people ask me lately if I've heard anything regarding a surgery date for Piper, and sadly, I've got no new info. I think this time next week, I will try calling the surgery-booking-lady at BCCH just to see where the list is at and whether or not I should start looking at things happening this month, or maybe I can relax for a while. Maybe this won't happen for a while! She could be much closer to 1 by the time this actually rolls around... who knows.

For now, Piper is getting closer to 8 months old and doesn't have a clue that her world will change a bit, in a little while.

She's had this cough now for almost 3 months, which seems kinda odd, so I think I might go back to the doctor this week just to see if she can hear anything new. I am fairly sure it bothers Piper, and I am certain it bothers me, as she will wake up from a dead sleep from that darn cough.

Her runny nose comes and goes, and at the moment, it is on its way to leaving, so I hope it stays that way.

In other news, we might have to think about lowering her crib soon, as she can pull herself up on it now. Ahk. She is quite proud of herself, too. She is trying her hardest to crawl, but those silly legs get in the way, but she is quite happy to be standing/walking (with my help of course), and quite good at it, too. She might just skip the crawling stage (which I really don't want... but there isn't much I can do about it). My life is on the cusp of some major changes... I can feel it! A mobile baby is much different than a cute, sitting one.

I have to keep reminding myself that mobility is freedom, too. Freedom for her to express her desires a bit more clearly, and to fulfill them, and a tiny bit of freedom for me, knowing she is where she wants to be. Hmmm... we'll see how that plays out.