Almost there!

Apparently this whole H1N1 thing affects more than you figure. We were supposed to have heard news about a possible surgery date for Piper by now (as they said once she had her heart cath that we would know in about a week or so), but it seems that for the review they (being some docs and surgeons) do on Mondays, there was not enough of them there to discuss Piper's case. Now, I am not sure if any of them had the flu, but it affected the nurses big time because they are just constantly on the phone with people regarding the flu and not calling people like us who were waiting on some info.

I did call the nurses this week to see if they knew anything and hadn't passed it along, and ended up leaving a message. They got back to me and explained the whole "it's been an unusually hectic week over here!" and I understood that completely.

So it's nice to know that there hasn't been any info withheld, there is just no new info. The nurse did say that this Monday, Dr. Duncan will be able to discuss Piper's case and will call by no later than Wednesday. Then we will have a date for surgery.

I feel as though I can relax a bit now. Up until now I was feeling as though I was kinda in the dark and waiting, waiting, waiting. Now, well, I am still waiting, but now I know for sure that after this Monday, there will be some sort of answer. Once we have a surgery date, I will be able to relax even more, as life can kinda move forward towards something real and palpable, instead of this ominous who-knows-when land.

The next debate is whether to get Piper the H1N1 flu shot. The nurse today did say that Piper was at a higher risk of having complications if she got it, due to her heart. But once she is 6 months, she can get the vaccine. I am torn. I feel as though I am not educated well enough to know all the sides of this debate. The nurse said that they wouldn't be releasing this vaccine if it wasn't safe. I do understand that, but this whole flu thing has come up so fast and there is just so much mixed information.

We'll keep thinking about it, and just keep washing our hands and sneezing into our sleeves.

Piper loves to pull hair now... at least Daddy's is short.

Sleep: blessing and a curse

The good news: Piper is sleeping pretty well these days.

Bad news: Mommy is not.

I remember having some terrible nights when I was pregnant, of just being up for hours, watching shows or reading. I hated that I was not sleeping.

Now, its happening all over again. But I have nothing to blame it on this time.

Its most aggravating because I have a sleeping baby by 9 or so, then feed her before I go to bed... and then I wait. I am just laying in bed, waiting for sleep to come. I am so exhausted, but it takes until past mid-night for sleep to come! And then Piper is up around 3-4am, so it feels like I never get any of that really good sleep. Argh.

Babies are supposed to be the bad sleepers, not the mommies!

Now that I think of it, the 2 nights before Piper's angiogram were very non-sleep nights. And so it has just continued. Maybe there is some residual stress? I feel pretty good about all of it, but maybe its somewhere hidden in my subconscious. Dang subconscious. Messing everything up.

The hospital hasn't called yet to tell us what they decided on after looking at the images they gathered from Piper's angiogram, so maybe that is weighing on me. Maybe I am nervous about actually getting a date for heart surgery.

Wow. Yeah, saying it out loud is kinda makes it more real. This is the first of many times when I can't let this totally overcome my life. This is just a part of my life, and Piper's life, and it won't become the central feature. There is so much more going on here!

So now, I feel like I need to improve on my bedtime routine (usually its all about the babies bedtime routine!). I will try reading some more, or having a story playing or something. Maybe I need a good foot massage. Hmmm... I'll put in an order. Who knows.

Here Piper is, after grabbing the bag of spinach clear off the table (she already has the salad dressing bottle in her lap), munching away on good things like clothes pins and plastic bags.

Back to "normal"

We just had a lovely Sunday.

We walked to church (had a great time), then walked to Wendy's for lunch and met friends there (had the second great time of the day), and then walked home to lounge about and do not too much of anything. We got little things done, but nothing too exciting. We were all pretty happy, too.

It seems Piper is all back to normal these days. Yesterday she was a little fussy, but today seems to be "normal". She's awake for good chunks of time and is usually fairly pleasant to be around. She seems to be completely recovered from Friday's angiogram. Matt gave her a bath tonight (seriously, one of her favorite things in the whole wide world) and she splashed like crazy. As he was drying her off, her little steri-strips just slipped right off. We could see a wee little poke mark where they put the catheter in, but it really just looks like a bug-bite. There is a little bruising, but nothing like what the doctor warned us about (he really thinks its gonna show all kinds of freaky colors). So far, so good.

She has a bit of a throaty cough, which, even during the course of the day, has gotten better. Apparently thats from the anesthetic (pretty heavy duty stuff, even for wee babies). She just gets lots of big pats on the back now to really dislodge that stuff.

Oh, and we let her go in her Jumperoo today and that seemed to have made her day!

She is quite a wiggly/bouncy baby. She can really move. That makes me a little nervous for her surgery recovery time as she won't be able to roll around much for a while, nor crawl (if she is doing that by then). Hmmm... Maybe I won't think about that right now.

Right now, I'll think about my perfectly happy baby (perfectly happy because she is sleeping), and all that we've come through all ready. Right now, I am choosing not to dwell on the "later" parts of this adventure. They'll come when they come. Right now, I am unusually tired, but also content with most aspects of my life. Right now, I am so blessed.

Here are the two buddies staring out at the street, keepin' an eye on our hood. (and yes, the cat does whack the camera)

Angiogram Day

So yesterday, I started my day off at 3:45am, to get Piper's last feeding in before 4am. Hooray for me! I hadn't really slept all that well for the past 2 nights, so it was almost a relief to just be up and to quit trying to sleep.

Anyways, feed the baby, get all of our random things out the door (books, laptops for boredom, snacks) and away we were in the darkness of the morning! Traffic was awesome, except leaving Surrey we got every light. Really strange. Oh well.

We arrived at BCCH just in time and were admitted to the little pre-area (I am finding that there are waiting rooms, for waiting rooms for everything... kinda a big emphasis on waiting).

Here a lovely nurse (they are all lovely nurses. I'll let you know when we meet a not-so-lovely one) measured and weighed Piper, and took her Saturation levels (almost always near 100%!) and checked her heart rate, blood pressure etc.

Later, the nurse numbed Piper's hand and foot, both possible points for the IV. I think the vein in her foot looked better than the ones in her hand. Then they put little bandages on her fist and foot to keep the numbing gel on.

Then we got all called into another waiting room

All was well, and Piper was actually not even crying yet (even though it was almost 4 hours since she had eaten last). After waiting in the day surgery waiting room, we were called into another waiting room to meet the anesthetist. He popped in, asked the same questions everyone else had (allergies, family history, when she last ate...) and then he disappeared. Soon, another nurse came to us and cooed at Piper and checked her foot tag (not on her wrist, as she could really scratch herself with it), and told us she would be taking her away to the Cath lab for her angiogram. We weren't allowed to bring her in...

Then we waited. Fortunately, my sister had come with us and could keep us busy. We found to cafeteria and had some brekkie, while we waited for about an hour and a half, when they said she would be done.

The waiting wasn't as bad as I thought it would be. It actually really helped to have someone else other than Matt there. Matt and I might have just stared at each other, thinking the same things and it would have stretched out that hour.

So breakfast was nice, and then it was back to the first waiting room.

Not long after, Dr. Duncan came out to tell us everything went fine and she was in recovery for a little while as she woke up. He said they tried to put the catheter in her right groin area, and it didn't work (2 pokes later), then he tried the left and it went much better. He said he got all the images they wanted and encountered no surprises.

Then, more waiting. He said about another half an hour.

So finally, I was called in (I think only one of us could go) by Dr. Duncan to see her. He said she was still sleeping. As I walked into the room, he pointed to the far corner and I could see a nurse hanging her hands over the bed bars and holding a pile of blankets down. As I got closer, I could see Piper's little pink head. And her eyes were open! She has just woken up!

This was the strangest part: she hardly looked like my baby. The nurse said that she was "pretty stoned", and I couldn't agree more. This is the only time I cried a little. Her eyes were so vacant, and her mouth was opened funny and she had no color in her lips or cheeks. She was just looking at me with these half open eyes and it was almost creepy. I knew she was my baby, but she just looked so different.

Then the nurse showed me the spot that they had put the catheter in and it was just a little red spot with some steri-strips marking it. It was a little bloody, but not too bad. The nurse was holding her left leg down because it needed to stay straight to make sure the vein that the catheter went in was properly healed. If she bent her leg too much, the vein would reopen and would start to ooze from the puncture site (and there would be a chance of blood clots- not good).

So soon after that, with another nurse, we wheeled Piper into the other recovery room with my holding her leg and also holding a bottle of sugar water that the nurse gave me to give her (apparently its really easy to digest and won't upset her tummy). We needed to keep her calm for a while.

So then Matt and Anna could come and see her. Piper was getting more and more real looking all the time. Her eyes opened more and she was even making some noises.

Soon, I could even nurse her, just keeping in mind to keep her flat. I was told to not nurse her too much, as she might just throw it all up, and then we'd have to wait a while to feed her again. She took her milk so contentedly, though a little drunkedly at first, but she figured it out.

Then, she just slept. A nurse would come every half hour to check her over, and the time went by pretty fast.

At some point, Dr. Duncan came back and actually showed us the footage they got of the catheter. It was so amazing! It was like a moving X-ray.

We could see the little catheter tube in her chest and then it would squirt some dye and with one heart pump, the dye was pushed everywhere! We could see her aorta, and all her capillaries and her heart chambers. It was all moving and all over the place. Somehow, the Dr could decipher what he needed to. He pointed out where some of the blood pours over into the other chamber when it shouldn't and that the muscle on the bottom of her heart was quite thick and would need to be cut away. He showed us a few different angles of when the dye got shot and it was amazing all over again! Such amazing technology!

He saw nothing new, and no surprises and everything looked just as he thought it would. He then told us that due to this, Piper is way at the bottom of the pecking order for surgery. He said there are about 70+ kids waiting at the moment. He thought that her surgery would be just before Christmas, or right after.

So that's a good thing and a bad thing. That is a whole two or more months for her to grow and get my milk and get strong. But its more waiting, too. Really, the longer we wait, the better. She will only be better for it. The only way we could bump her surgery up would be if something goes wrong with her, which we really don't want.

So I guess its more waiting.

After another good feed, and a nap, we were all ready to go home. She was checked over again, and the nurses gave us some info on things to watch for when we were home and then we were away! Dr. Duncan and a whole panel of docs and surgeons will look at the images from the angiogram on Monday and decide what is best for her. We should get a call in the next week to let us know a possible surgery date.

It was so nice to be home and just relax. We had gotten some wraps for a late lunch and just enjoyed them fully! Then, it was a big nap for every body. It felt so good. We were all pretty bagged. Piper would be up for about 20-40 mins and then back to bed. She was pretty happy when she was awake, she just didn't last long. But she had a pretty normal nights sleep and today has been pretty good. We are locked in the house due to the rain, and we are keeping her out of her Jumperoo (her fav!) just due to her cut, but other than that, she is doing so well. She needs a few more naps and lots of holding, but she is nearly back to herself.

So now, I eagerly await hearing from the hospital on what they think for Piper's surgery. Really, I should just get used to this waiting. I might be doing a lot of it for the next while.

Thanks again to every body for being so great to us. We felt a lot of love yesterday :)

Home and Happy!

Just a quick note, as we are all exhausted, but we are all home now, and happy to be so.

Piper did so awesome this morning and everything went smoothly. The doctors got all the images they needed and there were no surprises. She recovered well from the anesthetic and got to feed pretty soon after.

The nurses and doctors were all lovely and living up to their reputation. Matt and I were well taken care of, and Piper was in such good care.

Thanks again for all your thoughts and prayers for today. I'll update you more later, with some video's and pictures... now its nap time. Haven't really slept in the last few days.

Thank you, thank you, thank you.

I've got to let you all know that we really, truly can feel some serious prayer action coming our way. It really is a pretty powerful thing.

We've had a pretty chill evening, with a trip to Ikea/KMS (and some frozen yogurt!), then I had a much needed shower, which Piper joined me in later. Once we were all clean, we all headed down stairs for an epic viewing of some Planet Earth shows ("Jungles" and "Shallow Seas"... very few snakes, so it made for a good show). Piper just wiggled her heart out on the floor and watched a little, talked to the cat and was pretty happy. We let her stay up for as long as she was happy.

Matt gave her the last dose of Propranolol for today at around 9-ish, so her first and last dose for tomorrow will be at 4am, when all feeding stops. Luckily it will only be about 4 hours fasting, so I think she can make it.

Tonight, if she gets up, I'll feed her without any of my normal qualms. But I will make sure that she gets in her last feeding just before 4am and we'll all have a bit more sleep and then make our way to Vancouver, maybe around 5:45am?

All in all, today was pretty decent. I had a near melt-down right around lunch time, as I was severely tired, hungry and thirsty, hence, an emotional wreck. Luckily, my sister called at just the right time and I could download a little bit. I felt much better after a bit of lunch and a reading break.

Am I afraid? Maybe.

Of what? Nothing really. But everything at the same time.

I don't know how I will react leaving her. Or how I will feel walking away, knowing I can't do anything else for a while. I am a little worried of the "away" time. I mean, we've left her before, but it's not quite the same.

This is a good dry-run at what the days leading up to surgery will be like. I feel like if we can muscle through this time, we can maybe handle that.

Thank you all for your thoughts and prayers for tomorrow. And wow! This isn't even her surgery. I guess this is also a dry-run for all of you, too, and I am already overwhelmed by the love and support. Seriously. Thank you.

I just wanted to add this picture. Its one of my favorites, still. Piper just loves her bath time.

I look at this one and remember how I felt back then (maybe a few days old), thinking 5-6 months is still eons away.

And here we are. Piper is 5 months strong. And this is all actually happening.

We've got a time!

So, the hospital called and we got the 6:30am slot! Hoorah!

I am actually really excited to have a time, any time, to look forward to. The countdown is on. I think I really needed that.

I've already given Piper one dose of the Propranolol, and she is due for her second dose in another hour or so. The first time went just fine (she loves helping to put the little syringe in her mouth), and it does taste kinda sweet, and its cold, which is a new thing for her. All in all, a treat, maybe? It has kinda mellowed her out a bit already. Naps have been heavy, but her happy times are still pretty happy, so not too much change.

Tonight, I think we'll keep busy by going to Ikea (aka: KMS for Matt) and we'll just see how this day goes! (and hopefully I'll sleep better than last night...)

Tomorrow things get rollin'... kinda.

So tomorrow we begin the process of getting ready for the first little procedure before Piper's surgery. Wow, that sounded convoluted.

Basically, we start giving her some medication tomorrow so that she is ready for her angiogram on Friday. Really, its not too big of a deal. But medication and babies is always a treat. Most of it ends up running down her cheek, or on her shirt or all over her fingers, then, promptly everywhere else.

This medication is Pronpanol, which is a "beta-blocker", which, I think in this case is used to help open up Piper's arteries a bit? I have a better description written down from the nurse. Tonight, my brain is nearly empty.

Anyways, we start giving her 3mls tomorrow morning at 7am, then another 3mls at 2pm and then another 3mls at 10pm and then the last dose at about 6am. Plus or minus, here or there. I will try my hardest to keep to these times, so we don't have any reason to delay this procedure. And maybe they have special treats for parents who follow instructions well! Hey, I'm hoping.

Also, tomorrow afternoon, BCCH calls us to confirm a time to come in for her angiogram. It will either be for 6.30am or 9.30am. The nurse who called the other day said that they usually give the earlier appointment to the younger child, and Piper is the younger one, so maybe we'll be going in for 6.30? I kinda hope so. Surrey to Vancouver traffic at 9-ish will suck, and that will just add to the stress of the day.

Plus, we can't let her eat for at least 4 hours ahead of time (which is actually much better than I thought. I thought it was like, 8 or 10 hours before. 4 I think I can handle). So again, I am hoping for 6.30am. (wowza! I am not usually excited for anything to happen that early)

Again, they say the procedure should take about 1-2 hours (not sure if that includes prep, too?) and then they will want to keep her for at least 4 hours to recover to make sure the incision in her leg doesn't bleed and her IV-ed spot is ok.

Did you know, if they can't get a good IV in a child's arm or foot, they try to put it in their scalp? Yah. Not cool. The nurse said that if Piper is good and strong, she doesn't see why they would need to go in through her scalp. Ummm, so here's hoping for her arm?

The nurse also said that some anesthesiologists (almost spelled that right the first time!) let you stay with your baby right until they put them to sleep, while others let you take them up to the table, and then ask you to leave (while, I am assuming Piper will be good and screaming like a banshee by then). Half of me is thinking I will just want to walk away without having to see a needle go in her, and see her struggle, while the other half of me wants to help and try my darndest to sooth her (if that is even possible). I really have no idea how I'll feel.

I do know that all of my is glad this is all happening when she is young. I can still pick her up and move her where she needs to be; she can't run away, or tell me she wants to; she can't physically hurt anyone trying to help her, and she probably won't remember any of this.

I know I will.

Here is a little video of Piper and the Foos, just hanging out. The Foosa usually just gives Piper a glare and tries to steer clear of her whenever she can, but there are moments when she tolerates her.

Piper on the other hand is enthralled by the cat. You can have a screaming baby one second, then bring her down to the cat's level and just let her look at her and she calms right down. She is trying so hard to reach for her and feel her fur (and probably stick any kitty parts in her mouth), but the Foos usually doesn't let that happen. We'll see how this progresses. I think the cat takes it easy because she knows Piper really can't move all that fast on her own. But a crawling baby will be a whole different story.

And here is a picture of Piper's Opa (Matt's dad). He just loves her to bits and pieces. He reminded us tonight, with a lovely prayer, that we trust God in all of this. We give Piper up to Him, and just trust Him with will all we've got. He's got it all under control.

Again. Big breath.

Let me show you this book!

Ok, so before we ever left the hospital with Piper (after she was born), we talked with Dr. Duncan of BCCH at Surrey MH and he drew out this lovely diagram of Piper's condition etc, etc. He wrote down a bunch of numbers for us, people to contact and call etc. Anyways, in the midst of all of that, he said "next time you come to BCCH, we'll give you this special book about heart conditions". Ok, kinda cool. I love books. But really, I had no idea what to expect.

It turns out that a lot of thought has gone into stuff like this. I wanted to show you all the amount of work that has gone into preparing parents for this kind of thing. Man, these people are really on the ball!

Here is the lovely cover of the binder of info (nice and colorful, and easy to read!)

Then, there is just more specific info on exactly what will be happening to Piper when she has her heart surgery. They are constantly thinking of the parents. So nice.

Then they have everything nicely organized for all the situations that will come up, pre-surgery. Lots of diagrams and words of encouragement, and really helpful, honest information. They tell you exactly what will happen to your baby the whole way through.

The part I especially like are the little quotes along the sides of all the pages from other parents who have gone through all of this, and are commenting on certain aspects of having your child have heart surgery. They are quite encouraging :)

Anyways, just singing the praise of this hospital and all its going through to keep our baby safe.

The nurse for Dr. Duncan called the other day to just see how I was feeling about Piper's angiogram and if I had any questions. Like, genuine concern. Yeah, I've never met this woman, but she was awesome. She gave me more info for the day of and gave me some reassurance of how standard this is (they do 10 of these a week!)

She also said that once the doctors and surgeons have the results of the angiogram, they will discuss them as a panel (yeah, like a whole bunch of really smart doctors all talking about how best to help our baby!) and decide when would be the best date for surgery (the Dr has mentioned mid-November, but they will then solidify it- who knows, maybe the results will change something?). They will let us know within about a week or so of her angiogram when surgery will be.

That makes me feel really relieved. I would love to pencil a date down in my book. I need something to aim towards, to count days off. I need the visual of the days creeping nearer.

I feel as though I will soon be able to see an end point, when we can really start relaxing.

Big breath.

On another note, with Piper having 2 teeth now, we pulled out her spoons and let her play with them, as she is all the more closer to being ready to eat. She can grab them all on her own, and like everything else, goes straight in her mouth. We haven't started solids yet (she is just barely 5 months), but I think she'll be pretty eager for them!

Piper-in-Purple day.

These days, Piper likes to be busy. None of this loitering around the house business (one of my fav pastimes!). Nope. Lets get out and see people and places, please.

So today was a little busy, but pretty nice. I am surprised she did so well today, as she hardly slept last night, due to the fact that she has now cut her second tooth. Yeah, I am not too sure how I feel about that. But they are both through and sharp. I guess she is ready for steak.

Its funny because I remember my sister commenting at BCCH last time we were there, after she got her chest X-ray (a kinda funny procedure for babies, as they have to strap their little arms way above their heads with velcro and then they have the cutest little lead skirts for them in bright, fun colors), that you could see all her teeth! I mean, you could see all of her bones, too, but all of her teeth were there, just waiting to make an appearance.

And now they have.

Here is a video of Piper making some pretty classic sounds. (thanks M+S+H for the wiggle worm: its gotten an unusual amount of use! Now the Foos is a fan, too.)

Angiogram approachin'!

So we are down to two weeks until Piper's angiogram (if you want to know what that is, look some older posts). This really doesn't worry me much, but its still anesthetic in a baby and in that, there is always a risk, I guess.

I don't know if anyone else plays this game, but I am constantly thinking in my head "this time next week I'll be ____" or "this time next year I'll be _____" or "this time last year, I was ____". I don't know why, but I always find it so amazing to see how far one has come in time, or where one is going. Like in two weeks, exactly, maybe we'll be in a waiting room, waiting for someone to come and tell us we can see our daughter now, or maybe we'll be on the way home from the hospital, or maybe we'll still be loitering about (probably watching movies) at the hospital... who knows.

This time last year, we were heading up to Prince George to visit my family for Thanksgiving. I remember because that was when we told the rest of my family that we were pregnant. My parents and Matt's parents knew, but our siblings didn't. I remember sneakily asking my oldest sister (who was also pregnant, 2 months ahead of me) if I could have some of her prenatal vitamins, as I had forgotten mine. Her mouth gaped open and said "well, why...? because you need them??!! Please, have as many as you want!!!", which was then followed by a hearty hug.

My mom slipped it into some morning conversation to inform my other sister and brother, somehow referring to my brother saying something like "uncle, uncle, uncle Dawson" (I still didn't really get it...), but my sister starting counting on her fingers: uncle (for Charis -first niece), uncle (for my sisters other baby on the way) and uncle ??? Again, gaping mouth and pointing at me and much jumping and dancing and hugging all around.

It's funny how those memories really stick in your head. And it just blows my mind that that was a whole year ago. It feels like one year and one second all at the same time.

And this time next year, well... wow. Piper will be almost 1 and half, hopefully walking and babbling some semblance of words and keeping us pretty busy, I'm sure. Who knows what life will have tossed at us by then. I love and hate the mystery of time, but it always keeps me entertained.

Here is a little video of Piper blowing some raspberries at me... she just loves having her tongue out of her face, and is now sticking anything she can get in there. Let the adventure begin! (and yes, we are listening to the Bible on tape)