Thinking of leaving... 3 days left to wait.

When will our child be ready to move out of the ICU?:

There are a few things that need to happen before Piper can leave the ICU.

- she needs to be breathing on her own without the help of the ventilator,

- her blood pressure and heart rhythms are stable and

- any bleeding from her chest tube is under control.

I can say all of things now and it seems like not a big deal, and maybe it isn't all... but maybe it is? I did hear some really encouraging news from a friend who has a nurse it the family who explained Piper's situation to. The nurse kinda laughed it off saying, "oh, she'll be out of the ICU in no time and those babies recover so fast". She really implied there was nothing to worry about. Really. I like that kind of news, and I usually feel that way most of the time.

Anyways, they say here there is always a chance of moving back to the ICU if there are complications, but I am feeling pretty good that there won't be any.

Leaving the ICU:

This next section, this book makes a really good point: that once our baby leaves the ICU, we may feel a bit relieved, as the high-stress zone is behind us, but the next "zone" isn't necessarily more stress, but it is certainly more work. On 3M (the recovering ward), there won't be the same kind of monitoring and attention as there is on the ICU. Good thing and a bad thing. This means that we parents will be doing a lot more of it. Good thing and a bad thing. They really brace you for being just as exhausted/overwhelmed as you were in the ICU, "yet you still have new people to meet and a new system to learn."

I am glad they mentioned that. I kinda put a lot of weight in the ICU time, thinking "once we get through that, it will be much smoother sailing". Right? Maybe not so much. It's that same realization after you've had your baby and think "so, I am the person responsible now? This is all up to me?". Takes a minute to sink in.

Hopefully by the time she is ready to me moved, we will have a better grip on her situation and how she is doing and know how to handle her a bit better. It won't be such a mystery anymore.

So on Monday (yes, that is tomorrow!), we will visit all of these places, so maybe we'll have a better idea of what to expect. I think that will help solidify the space in my mind a bit more. That always helps: kinda pre-visualizing.

They do make an interesting point in this book, saying that we should "start preparing to go home on Day 1- start learning what you need to know as soon as possible". What an excellent idea. I mean, we would be thinking of going home, of course, but maybe we should be taking more active notes, or trying to imagine how this care would work in our home situation. And again, pre-visualizing, seeing our baby home and us taking care of her and knowing what is best and feeling confident in our decisions and just plain knowledgeable on her condition. Yes, we need to constantly learning how to take care of her (isn't that a parent's eternal job anyways?) and imagining us doing it on our own.

The days are really counting down now. But I am mostly feeling ok. Really. Just like anything, it comes in waves, but today, right now, I am feeling good.

Getting ready. Down to 6 days

What will we need while our child is in the ICU?:

Fortunately, we are being well taken care of. They list 5 things here, and I'll let you know how we are doing on these fronts.

- A place to stay: like I mentioned before, my dear friend is out of town for the week and she has offered her place to us. She also happens to live about 5 mins away from the hospital, and has her own on-suite, TV and nice big bed. Thank you Karen. Big-time help. We'll stay there for a night or two while Piper is in the ICU.

- A pager: hmmm... they also mean "cell-phone", I assume. They say they might have "parent pagers" availible for us to take, too, but we'll most likely communicate to them with our phones when we are away.

- A microwave: they've got some on the floor, as well as a fridge/freezer and a toaster oven! Hooray!

- Locker for personal belongings: we'll have the car, and probably just keep a back-pack on us if we are really accumulating a lot of things. We live rather well out of a pack.

- A breast pump: luckily, the hospital is full of them. They've got whole rooms and fridges dedicated to milk-pumping women. That is so encouraging:) I love that they also want my baby getting the best possible milk she can get. I've also got a hand pump just in case.

And here are some more things that I've got ready for us:

* books I plan on reading more of (Dove looks like a good one to read together)

*Good old Gold Fish (Matt's secret vice)

* Our fave granola bars (I claim all the cinnamon roll ones)

* Getting our fruits+veggies in when we can

* Yes, those are Froot Loops. So good though! We'll try to not go out for breakfast, hence, the cereal.

* These are so stinkin' tasty! Even the Foos is interested. Go pick some up right now!

And then I found these jammies at Costco. These are a "welcome home!" pair of jam-jams. They were the only ones there, no tags (must have been a return), but they had a zipper! In the hospital, well, at least last time, they said she could wear clothes, but snaps were handy because little probes and lines could still go through them. But as every parent knows, a squirming kid is never easy to get into snap jammies. So these nice little jammies remind me that in no time flat, she is going to be squirming up a storm and I will be so thankful for the quick zipper. And she looks so nice in those colors. And everything with a little birdy on it makes me think of a sand piper, hence, I have to buy it. Danger.

But I'll have these washed and ready to wear, waiting for her on her crib when she gets home.

One week to go: aka 7 days left.

A week to go. I can play the "what will be doing this time next week?/year?" game.

This time next week, we will hopefully be sitting near our baby who is out of surgery, and probably still sleeping. I imagine her looking pretty wiped, maybe not quite the right color, but content sleeping. Matt and I will probably leave when we feel comfortable that everything is settled and she'll have a good restful night. I will try my hardest to sleep that night. It would be our first night away from her.

Next year? Wow. She'll be walking, maybe talking a wee bit, and probably a crazy girl that keeps us non-stop busy. I imagine her having lots more hair, maybe a few curls and a laugh to melt your heart. I can see her scar healing amazingly well, and that she can keep up with the fastest kids. I imagine you'd never be able to tell she ever had a heart that needs fixin'.

What do we tell friends and extended family?:

The biggest thing people can do for us while we are going through this is exactly what everyone is already doing: just being around. It helps my heart so much to hear that people are praying for us and keeping us in their thoughts. It really does help me cope a little better.

At the bottom of the blog, I have a list of ways people can help, if they are really keen :)

ICU realities:

They do mention in here that there is a possibility of seeing one of the other patients (and their parents) go through some pretty traumatic events, even seeing their child die. I have no idea what to expect regarding what kind of events will be happening in there. Maybe Piper's case will one of the more serious ones, maybe it will be small potatoes in comparison to some. It's nice to have a moment to brace oneself... You just never know.

I do remember Matt's sister mentioning to us very early on in, that maybe Piper has this heart defect so that we could effect people somehow, even the people we meet in the hospital. Maybe it's one of those "for such a time as this" sorts of things. It might be a very "closed" environment, in that, every parent in there is dealing with the weight of their child's recovery, and no one is there to make friends. But maybe, in another way, it will be really "close" because we all have something similar that binds us together.

Anyways, they also say that the privacy of all the patients is important, so the nurses and staff won't discuss what is happening to other patients, though we are free to support fellow parents as we see fit.

Again, I just hope this ICU stint is short, but sweet. I think it might feel the longest, but will actually be the shortest.

Well, it looks like we may have given birth to child who is half shark, or something. She keeps popping out these teeth at a rapid rate.

She now has her top two teeth in, totalling 4, but I can see the two nextdoor neighbors coming in beside the top one! What? This does explain the last few nights, but honestly, baby! Give your parents a break. What do you need teeth so bad for? I haven't gotten a picture yet of the top ones, but they are most certainly there!

Thinking about the parents - 8 days

There is a whole section devoted to Taking care of yourself, which I find really comforting. It just re-instates the fact, that all of this info has been really well thought out.

They recommend, while staying in the ICU, to:

- take turns, leaving Matt or someone else at Piper's bedside, and have a break

- eat good food... especially since I'll still be breast-feeding, and lots of water

- sleep whenever possible

- take walks, go outside, get some exercise: it will feel good.

- talk things out with someone

They encourage you to not feel guilty about leaving your child's bedside, but do what you have to do to stay healthy (inside and out).

I am really hoping Piper won't be in there too long. Maybe 2 days? Hopefully just one night. That would be amazing. But we'll see how things go. It's not about my comfort level.

They confirm the fact that no one can "do it all", and expect you to take breaks and take off from time to time. I feel better about that. I want to be around as much as I can, but not so much as to get stir-crazy.

I remember the nursery at SMH, for the day/night Piper was in there, it was just not a place you really "hung out". You wanted to get in, feed your baby, spend some time and then have some reason to get out. It was a great place, people and care wise, but it's just kinda heavy (granted, yes, I had just given birth to a baby, I probably wasn't in the best place emotionally/physically, but still).

I plan on, for those ICU days, to have some really comfy, good-looking clothes (it always helps to feel a little pretty), and have as few "things" as possible. Just some essentials: purse (phone, wallet, day-timer), water/fluid, snack, book, computer (optional- now that I think of it... I might not take it... stealable? geez! who goes into an ICU and steals??!!). I'll wear comfy shoes, and have a light jacket/sweater. I'll have candy and tissues in my pocket (kinda sounds like what a Grandpa would have in his pocket...)

I like to feel as prepared as I can. Though I am fully prepared to be unprepared. Does that make sense? I just know that all my preparation might prove moot when it actually comes down to it. Anything could happen.

Tomorrow, surgery will be a week away. This time next week we will hopefully have a sleeping baby, though a baby that may just have a very hungry night/day ahead of her.

Otherwise, today was a beautiful day! I loved seeing the sunshine... just reminded me that we have to get our car windows tinted. Can't wait for the summer :) I am vigorously planning my veggie garden... should be interesting.

Moving right along... 9 days to go

For some reason, this was the weekend that it really hit Matt and I what was happening. I don't know if it was meeting the surgeon and hearing really, unfiltered info straight from the source, or just that we finally thought about this surgery for the first time... I don't know. But it felt a little more real this weekend, for some reason or another.

This week I am trying to keep somewhat busy. This Thursday my parents come into town until Saturday morning, so that should be a good distraction, and my Saturday is really quite full. Maybe Sunday will be a "down" day, with not to much going on, and then Monday we'll spend a good amount of the day at the hospital getting info for Wednesday's surgery. Wow.

We've stopped bringing Piper to church, and to other parties, just to avoid germs. I know people just want to see Piper and get close, but I just have no idea what they could "have"... I feel better just keeping her out of highly peopled situations, so then I don't have to sound like a totally anal mother asking people to step away from my child! or asking them when was the last time they had chicken pox. Nope. We'll just keep her away. We still get out, just not really closed in spaces, or places with too many people.

Shaking her head and an arm-flap.

Anyways, back to this binder I am trying to get through. Next question:

Who will be caring for our child?:

I think there will be a load of people caring for Piper. A bunch a people from the ICU team, and they consult the cardiologist and the surgeon when they need to and then, with shift changes etc, I think we'll end up seeing a lot of faces.

When they do rounds in the ICU, there could be as many as 15 people coming to Piper's bed side... Yikes.

I remember just in our 2-3 days in the hospital with her being born, we met at least 5 specialists and about 20 different nurses, and they all cared uniquely for Piper. Yikes again.

How can we care for our child in an ICU?:

This ICU time I am a little worried about. I am worried it will be crammed with distressed looking parents, with harried nurses and sick/sad kids. I am worried I won't have anything to do and will be bored. I am worried I will be so emotionally drained that I am of no use to anyone, especially Piper. I know the space is limited there, and there will be a hundred things beeping and it might be hard to focus on my baby. I guess there is no way to really tell until we're there.

They do keep saying in this book that the "parents play an important role in helping their child recover". I do like feeling useful, and hopefully Matt and I can both feel so. They keep saying that we know the most about our child. Yes, that is true: we are the Piper experts. They might just be the Piper's-heart experts.

We can do simple things (not sure if right away or not) like changes her diapers, change her position, read her stories, give her hugs and kisses etc. We are experts at all of those things, too.

Making some rhythm

Visiting the ICU:

As parents, we aren't considered "visitors" of the ICU so we can stay there all the time, though sometimes there may be a crises in the ICU and all unnecessary people will have to jet out of there. Hopefully there won't be any drama like that, and not to our baby.

We would welcome visitors, too. Though at the moment I am not too sure when. We might just wait until we are out of the ICU... not sure yet. Maybe just family for those days. But I feel as though I would love to see some friends on the other days, when Piper is up on 3M (the recovery ward). I think I might need the fresh social interaction, and maybe just a break from thinking about Piper and how she is doing etc. So yes! That might be really nice, though don't feel obliged either. But knowing myself, I would love to see some friendly faces that aren't wearing scrubs :)

Of course, people should only come if they aren't sick (cough, cold, flu, fever) for Piper's sake and for all the other kiddies in there, too.

Bedside space:

There won't be much room in the ICU for things, like gifts, or toys or even my own things. I think I'll get a good book, maybe my laptop (and earphones) and snacks. Hopefully I'll have some space for that. I am sure there will be plenty of visual distractions going on... I think I'll bring Piper's sock-monkey blanket (lovingly made by Gram- my mom) and maybe a favorite stuffed toy or two. She really does love her Little People toys, but not sure how much co-ordination she'll have for little things. Hmmm...

So I put up a bunch of video's, as I hadn't in a while. And I know it looks like we only have fun in the kitchen, but I promise, we do roam around the house. The kitchen is a pretty fun place, though. Enjoy!

Piper helping me eat my apple...

Met the surgeon! 12 days left

Ok, so briefly, we met the surgeon today at BCCH. He was such a classy middle aged dude, with classy shiny shoes and plaid pants. Cool plaid, not leprechaun plaid. Anyways, a good sense of humor and a jolly demeanor.

He went over what they will do during surgery, from what he can tell from the reports (we've never met him, nor has he met Piper; he only knows her on paper). Most everything I already understood. There is still a tiny bit of a wild card with the one valve though. It's one of those things that you can't quite know until you're actually looking right at it. He says that in one case, they can fix it easily (or it will fix itself?) and be done with it, or else if it might call for more surgery down the road. I don't really feel like explaining the exact details, but it could go one way or the other, and there is no way to tell until they are done. I am really hoping this is the only surgery Piper has to have...

Anyways, he mentioned lots of other helpful things like how long it will take (approx 5 hours- not as bad as I thought!), and we signed the consent forms. We walked away feeling better about most things. Clarity isn't always great, but I am glad that we can fully understand what will be going on. We really liked him. He said that last year he (not sure if it was him in particular, or the cardiac team) performed heart surgery on about 320 wee kiddies. Ahk. Yeah, he knows what he is doing. He did say that this procedure was fairly straightforward, but as with anything, there are always risks.

He did go into a number of risks (he knows them all, so he mentioned them all), but I am not even going to repeat any. We'll cross that bridge when we get there. Some of the risks ranged from 1 in 1,000,000 to 1 in 100, so it's all over the place. I know Piper is in such good health and is so strong for her condition. I know she will do well.

What can we expect in the first few hours and days after surgery?:

It will be pretty busy around Piper's bed for awhile once she is first out in the ICU, but things should calm down as she is stabilized and everything is checked over. She will most likely still be on the ventilator over night, so we might spend that night away. Luckily for us, a friend of ours who lives 5-7 mins away is out of town for that week, and said we are welcome to steal her bedroom to crash or nap, or especially, for that first night out. That will be really handy, to get away without being too far away.

The surgeon mentioned today that she will probably get taken off the ventilator in the morning, so we'll hopefully be back for that. I am not sure how much of all of that we allowed to see? Anyways, she should be awake that morning and hopefully she will see us and know us and that might help. She will still be on some morphine and another drug that relaxes the muscles so that the heart doesn't have to work hard, and she won't wiggle too much.

Soon enough, she won't need too much, though still be closely monitored, and we'll get closer and closer to taking her home. Both Matt and I have expressed nervousness about taking her home. It might be kinda nice at the hospital having them know everything and take care of her, but at home, it might all be guess work.

Nah, I am sure they will equip us with all we need to know to feel safe and secure.

Ok, that is all for today. It's been a little bit full of information, but all good! It might take a few days to dissect it all. But we are SO glad we took the opportunity to have this meeting early to really process this all. And we got an interesting afternoon to ourselves :) thanks Oma.

Getting it over with (13 days)

So those last few posts were kinda tough, so I am glad to be done with them. I forget sometimes how serious this procedure is going to be. I can jibe a little about how strange Piper might seem after surgery, but I don't think there is anything funny about it. Sometimes dark times call for dark humor. Don't get me wrong. I fully know what we've signed up for, and I am taking this seriously... just maybe trying to find that silver lining, you know?

The Intensive Care Unit:

So, once we are in here, it sorta signals that the worst is over. In some ways yes, in others no. This is the first bit of time what Piper will be "on her own", meaning not constantly monitored every single second, and won't have to attention of half a dozen people all the time. Still, we will be on our way to recovery.

She will still be very closely watched by nurses etc. This will be a room with a bunch other post-op patients as well. I don't know if anyone has ever been in one, but I imagine it to be very similar to the time we were there for her angiogram. Its a huge room with numerous beds and lots of stainless steel, lots of white bed sheets and lots of beige colored walls. The nurses scrubs are often nice and bright and chipper.

One of the big things in the ICU (just like the nursery, too, at SMH) is that here are one hundred beeping things going off all of the time. I know from all the times Piper has been attached to one of these monitors, there has never actually been a time when the beeping is legit. It is almost always beeping because of a lost contact, or something has fallen off. Anyways, you learn to tune it out pretty darn fast.

What will our child look like?:

This is when we'll see Piper for the first time after her surgery. What I imagine is her sleeping (sedated) with tubes up her nose (maybe taped?), and a large wrapping of gauze covering her chest (might look like a white tube top, maybe?), and a perfect little diaper on (the hospital always uses Pampers). She'll have an IV in her hand, most likely, maybe in her foot like last time. She might have some tubes out of her leg, too... not sure. Anyways, I know there will be lots of lines coming to and from her chest, and maybe I'll see some fluids coming in or out. I am prepared for that. We'll see what we get.

They say to be prepared to even see your baby's eyes, hands or face a bit swollen, too. I am guessing because of the fluids they are putting in them during and after surgery. I know I got some fluids put into me during the last leg of my labor and after, and my face puffed up like a marshmallow! My eyes were so tiny. Man, those photos are embarrassing. I am sure on Piper, it will just look cute.

They also mention that she might have a cooling blanket to control fever, which decreases the amount of work the heart has to do. They state that most babies get a fever after heart surgery. Something like an electric blanket for babies? Sign me up!

I also called the cardiology nurse today (have I mentioned before how awesome they are?) to ask a few other questions. I found more useful things out, like it is totally possible for us to give our own blood to fill the lines of the HLM, but there is a slight chance (0.01%) that her body will reject our blood, as it's too similar. The nurse said that the risks were much lower in using blood from a donor. Ok, the lower the risk, the better.

And that the first night after Piper's surgery might be good night to spend a night away (not sleep in the hospital). She said that in the ICU there is no room for a bed for a parent, so we would be stuck in a rocking chair. Yah. Not cool. Or else, to sleep in a waiting room. Again, not cool. So that night we will try to spend away, but close by. They said that they would call us if Piper woke up distressed, and we could just jet on over. Might look into that.

The nurse said that since she is a "pink" baby, she should do just fine with the fixed heart and the increased and better blood flow after surgery. She thinks she will only need one day in the ICU and then she should be moved up to 3M (haven't been there yet). She said once we are in 3M, we get our own room and it will be easier to sleep over there. They will have one bed (I think it's like the one's that the Daddy's sleep on in the maternity ward), but they said if we can find a way to get another one in there, we can both stay. We will see how things go and then see how often both of us are staying. Matt plans to still work as much as he can, as I don't think there will be much to do during the day, but we will play that part by ear. It could all depend on how things go.

Oh, and again, talking with the nurse, she asked if we wanted to see the surgeon early and have that talk with him about what exactly he'll be doing, the risks, recovery etc. This meeting we don't need to bring Piper to and so we can just soak it all in and not be distracted. The nurse was saying that this part of the meeting can be quite stressful, so it's nice to do it on it's own day. We will still have the pre-op meeting on the 1st of Feb, but maybe now it will be a bit shorter and not so "heavy". Here's hoping anyways. We booked an appointment for tomorrow at 2:30pm. Nice and quick! Then we'll have a whole week+ to really get everything together in our heads.

Wow. This is really happening.

Big breath.

Just gotta keep going... 2 weeks exactly.

I've just got to get through these details regarding surgery and then I think I'll be feeling better! Ok, let's get to it!

What will happen during the surgery?: (con't)

So, on wee babes, after the surgery, they close the skin on the chest, but they actually leave the breastbone open because the heart will be quite swollen. They will sew it back together in a few days once the swelling has gone down and she is stable. I don't think we'll see any of this, as she'll have a wrap of gauze around her that covers the incision.

This part I don't really like, but I do understand it, I suppose. I just don't like the idea of her being "wide open". I guess a few days post-surgery, they will have to do that mini bit of tidy up, though I am not sure when that will be. Hopefully it won't take long, or too much anaesthetic. Well, I mean, I hope they use an adequate amount of course, but geesh. Anyways...

There is also a chance they might put a tube called a peritoneal disalysis tube under her belly button into her kidneys to help drain any extra fluid. This could be removed a few days post, as well.

Another chance thing that might happen is that her heart rhythms aren't quite normal, or beat uncoordinatedly. The surgeon will place temporary pacemaker wires next to her heart after the surgery and leave the wires coming out of her skin, so that if needed, they can hook her up to an external pacemaker if her rhythms get too out of whack.

This is another one I shouldn't think about too much. Still, very Borg-ish. Poor robot baby. She will be temporarily run by machines. Though at least the machines are on our side... Yes, I do appreciated everything those machines can do.

These pacemaker wires can apparently be removes as easily as stitches. Just pull 'em through.

Another tube coming out of Piper will be some chest tubes. These will be draining extra fluid, air and blood away from the heart as it heals. These tubes will be placed in there after the surgery, before she heads to the ICU.

Will they stick out of her chest, too? Or will they pop out the side, kinda like a garden hose? I am not too sure. Apparently, they are hooked up to a machine that makes suction and "soft bubbling noises". The nurses keep an eye on these to make sure they are not becoming clogged or unconnected, and that she is keeping an adequate level of healthy fluids.

Done. That was the worst of it. The rest of this chapter is all recovery. I am just as nervous about that, but not so much the talking about it part... just the doing it part. I have a feeling that part will be the most mentally, emotionally and physically draining. Still, I like having this time to think about it, and sorta prep for it... as much as I can anyways.

Now it looks like Piper's fourth tooth (top right) is close to come in. This is causing a good deal of drama lately, or else something is... I just blame it on the teeth. She has been teething for just about 2 months on these bad boys... I am kinda tired of it. Is this just how it goes from now on? Teeth always coming in, disturbing nights (and days!) and reeking all sorts of havoc on these poor, bewildered parents... Like I said, I am just blaming it on the teeth. Maybe its something else. We will never really know, will we?

I am secretly excited for her to have those 4 teeth in. I always feel like their face is somewhat more complete that way.

Reluctance... 15 days.

Today I am just reluctant to get started on this. It's like I don't want to say any of these things out-loud because it makes them more real. It might be because I am still tired, or because I am just tired of talking about this impending surgery. I don't know. I'll only do as much as I feel like today. This is the hard part. The rest of the section of this chapter is all recovery, which is a bit more inspiring.

Ok. Here we go.

What will happen during the surgery?:

So everything is plugged in and working properly, the surgeon will make a cut over Piper's breastbone (sternum).

Now, since this will be open heart surgery, they will need to stop the heart to properly work on it. Totally makes sense. Totally makes me freak out.

This is where the heart-lung machine (HLM) kicks in. This part, I still don't get; how they plug her into this machine... I will have to ask about that. Boggles my mind.

They say that the heart is stopped with a medication called cardioplegia, and then once the surgery is done, she is slowly weaned off of the HLM, so eventually, her own heart will be pumping again. They also say that she will need the help of the ventilator for a few hours or a few days after the surgery.

The crazy thing is that her heart will actually stop beating for a time. Who can say that they've had that happen? This is another one of those moments when you just have to marvel at modern medicine. Like, seriously, jaw-dropping, pants-pooping, awe-inspiring marvel at what they can do on such a little person.

How many times can you say Thank You God, for letting my baby be born in this day and age, so that these amazing things can be over come? How many times can you say Thank You God for letting me and my family be born in this country, with all of our modern advances and money, and infrastructure and security? My heart literally hurts thinking of how much I have been blessed with, while a good portion of the world has hurting hearts due to loss of family and property and a bright looking future. Why is there such an imbalance? And how do I deal with this?

Anyways...

This is one of those things that I can't fully imagine. I have a feeling I won't really recognize my baby immediately after surgery. She might still be sleeping, and she'll have all of these foreign things coming out of her, and sounds, too, that it might not even seem real.

I remember Piper's face after her angiogram, and she hardly looked like herself then. Her mouth was droopy and her eyes were vacant and I seriously had to do a double take to make sure this was the right baby. I can only imagine this being amplified after this much more serious operation.

I'll just take it one step at a time. I'm sure I'll just be so overjoyed to finally be seeing her, that it won't even matter what she looks like.

I think that is all for today. Today, I don't feel like thinking about this.

This weekend we are planning on trying to move my office downstairs... possibly. I'll try to get a bit of paint so I can paint that space and clean it out and then we'll move my desk (rather large) and things down there. I feel like I can't really get any of my own business endeavors going in my present situation- everything is a mess and all over the place. Plus this room is also kinda a guest room, and its always been the "I'm not sure where this goes? Put it in the office" room. Hmmm... I am hoping a nice thorough clean up can help get things on their way.

I have to start thinking about what I want this next little while to look like, whether I want to try going back to work or really get my own thing going. I've got such motivation, but so little time to get this going.

And here we go again. Baby just woke up!

In the operating room: 17 days to wait

What will happen before the operation starts?:

So I am assuming this part we won't get to see at all. In which case, I am glad they are filling us in.

They say it takes about an hour to prep our baby for surgery. Starting with an IV for anaesthetic, and then once that is going, Piper won't be awake to know anything else they are doing. Good thing. That would be the most stressful hour of my life if I were still awake for that. The next time she wakes up will be in the ICU.

Ok. So once the anaesthetic is going, there are a few standard things to do pre-surgery.

1. A tube will go down her nose (or mouth) into her wind pipe to help her breathe during surgery. This is connected to a ventilator, which gives her the right amount of oxygen and does the breathing for her while they are operating.

2. An arterial line catheter will be placed in one of the arteries in her wrist, which will measure blood pressure during and after the surgery. It will later be used to take blood samples post-op, too.

3. Another IV will be placed in her neck (*wince*) or her groin (*more wince*) to give medications and more (infamous) blood products (why they can't just say "plain-old-blood", I don't know)

4. A urinary catheter will be inserted, so they can measure her output

5. A tube called a nasogastric tube (NG) will be put into one of her nostrils into the stomach to make sure that the stomach is empty and then to put the first feeding in there post-op.

So it sounds like Piper might look like one of the Star Trek fiends from the Borg, but I can see the purpose in most of them. 5 tubes in a wee little thing seems kinda crazy. I remember for her angiogram, we had to be so careful for a while after with the incision point (in her groin/bikini area -is it kosher to say that for a baby?) because if she bent her leg too much, it could bend the vein in the leg with the cut in it, and blood could get out and this and that, and basically scare the parents. But they were worried about that... so, with will have 2 more like that. Ahk.

There will be lots more tubes coming and going from her heart, I'm sure, but I don't think they go into specifics... maybe a good thing?

I have a feeling she will be a good deal more sedated, so we won't have to worry about her wiggling right away. They do say though, that most of these tubes will be needed still in the ICU post-op, so we will see her with all of them in.

That might be a bit of a sight, but I like being able to prep for it, mentally, emotionally. I know every time I see a baby with a tube up their nose, my heart quivers just a little. It's just not right, even though I know its there to help them.

Otherwise, life continues on as normal. The fridge was bare, so we tried filling it via mass-shopping-trip, and sorta succeeded, but you know, in like, two days we're going to stare in the fridge and groan "there's nothing to eat!". Such is life. Piper seemed to really enjoy the trip. Oh, and we got her a new big-kid car seat. The First Years True Fit, which is good until 65lbs and 7 years. Sounds good to me. And it is still compact enough to fit in the back of the car. Still rear-facing, there is more room in there than with the infant carrier. Hoorah!

Time wasting... days left: 19

* Just a note: I really to think that we will get bumped one more time, at least before this surgery actually happens. So I am mentally prepare for that, but I still like counting off the days.*

What should you do during the surgery?:

So, what I've been told is that the surgery could be about 6+ hours or so? I think. That is kinda a lot of time. Now, they do have a parents lounge there, but for 6 hours watching the clock? I think not.

Last time, we did go to the cafeteria for a bit, but that was only an hour or so. It's always fun to leave your name and phone number and where you are on the dry-erase board. I actually really like writing on those... and I like looking at the other names on the board, and seeing where they have gone: "Makenna's parents- Timmy's across the street". I just find it cute.

Anyways. Our plan of action is all depending on how we feel.

Option 1: Go to Oakrdige mall. I have never been there and would like to check it out. There is nothing like a little shopping to get your mind off of things. Do I sound like a girl or what? But I am serious. I do want to get to that mall.

Option 2: Check out the new Apple store (computers, not fruit). Also love that stuff. Matt might really, really enjoy that, and there are plenty of glossy distractions there, too.

Option 3: Loiter at someone's house. We have a few friends/family in the area who have offered us a place to hang out and wait, which we might just do. Just watch TV, or maybe take a nap, or read a book... who knows what we'll feel like.

Option 4: Wait at/around the hospital. Boo.

So, I am opting for options 1, 2 or 3, or a combo of them all. And a little bit of option 4 as well. I think we'll bring out laptop and a bunch of DVD's and go through some of those as well, even if we have to listen through headphones. We need something totally distracting. I just want that time to fly by.

In the next few posts I'll be going over what exactly they'll be doing during the surgery (or as much as I know), which is kinda crazy, but amazing at the same time. It makes more sense why it would take 6+ hours...

I am feeling pretty good still, though I am sleeping terribly. Truly terribly. I was up last night until 2:30am watching "What's Eating Gilbert Grape" (for the first time- totally a great movie!), and then tossed in bed for a while longer, then Piper woke up at about 5:30am, so I fed her and then I slept until she woke up for real at around 8am. So I didn't great a huge amount of sleep, and certainly not consecutive. I'm finding, as she's stretching her nights into slightly more human hours of sleeping, I am not coping all that well. It's like I just want her to wake up every few hours. Oh, but I don't, but my psyche does or something. I am nearly going insane trying all these bedtime routines for myself.

I just remember dreaming of the day that she could sleep until 5-ish and thinking, "wow, I could have all that sleep time to myself!", if I went to bed at 10pm, I could have a normal 7 hours of sleep, if not more! But alas, my body doesn't want it. And you know how it is; the more you want to sleep, the harder it is, the more frustrated you get, the more you get worked up! Ahk. Seriously considering something in a pill form. And I feel this will only get worse. I started sleeping like this right before Piper's angiogram, but only like a week or so... I've got 3 weeks to go until her surgery, if not more!

Sorry, little pitty party for the parent. Ok. I'm going to be now, with M. Atwood's most recent book and we'll see how this goes. Wish me luck!

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.