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.