A "Happy Wheezer"

I mentioned earlier that Piper had a little cough that I was going to get checked out at the doctor. So we went, and she listened to Piper's heart and chest and thinks it might be something like bronchiolitis, which is not bronchitis, but it is still not fun. The tiny little bronchioles get filled with mucus and make it difficult to breathe, and hence, the baby coughs trying to clear it up. Apparently, its very common for babies to get it, as it is quite like a normal cough or cold. But again, its even more common for babies with heart defects to get it. Hooray (note the sarcasm, much?).

I can't wait until she isn't at a greater risk for things like this.

The doctor called her a "happy wheezer" because she is otherwise fine: eating well, sleeping enough and her disposition is normal. She does have a slight purr. I don't really like hearing her cough, though, especially at night because it wakes all of us up.

But our lovely doctor sent her for a chest X-ray and we got that done later in the afternoon (though the x-ray clinic was kinda scarry- it had sings all over saying things like "if you have a cough/cold/fever, proceed to this special line up and tell the receptionist IMMEDIATELY" and there was hand sanitizer everywhere, and some people went up to the desk and were asked to put on a mask. Not cool. I tried not to touch anything).

Seeing this general X-ray machine made me really appreciate BCCH a lot more! This one was kinda just a table, nothing special, and there was just this square flap of lead to put over Piper's legs and I had to hold it there, while holding her legs down, while holding her arms out, while holding her completely still. Riiiight. At BCCH, everything is fit to the size of the baby, and that baby is velcro-ed in there and isn't moving for nothing! I know that sounds a bit harsher, but you get a better image.

Still, this always makes me marvel at the time we live in, and our health care system.

We should get the results from the X-ray on Wednesday or so. Even if she does have bronchiolitis, there is not a whole lot they can do. I think it just has to run its course. The worse case scenario is she gets hospitalized for a bit and gets an oxygen mask while there.

I am just hoping its something that passes, but her cough hasn't gotten any better since last Saturday, though it hasn't gotten worse, either.

We'll see.

But our baby is sitting on her own now, which is pretty fun! She still topples over sometimes, but she can sit there for quite some time, which is actually really fun! It seems in the last little while, she has done a serious amount of growing up. And I love it all. I wouldn't take a step backwards ever.

I love that she is pretty much double her birth weight, and that I can carry her on my hip and that she reaches for my glasses and hair and anything in my hand. I love that she smiles when she sees me and giggles when I tickle her. I love, love, love that she is growing.

Here is a movie of her growing some more, since 4 months. Enjoy!

Nothing new...

Sorry, I feel if there is no new medical information to give out, I don't bother updating this blog. Hmmm... I can still tell you all that Piper is doing just lovely these days. She has a wee bit of a cough, which is not fun, but it hasn't gotten any worse and there is no fever, so I am just letting it run its course. Of course, by the time you want it checked out, it takes nearly a full week to see a Doc anyways. Bah. Other than that, she is great.

I think, with her 6 month vaccines, I will get her the first dose of the flu shot and be done with the worrying. Its not in my nature to fret this much, and in her case, the outcome of getting the flu without the shot could be worse than whatever the repercussions of getting the shot are. Does that make sense? And besides, there is too much hype. This is not a moral issue. It's a personal, medical choice. So there.

Oh, but I did hear something nice from a friend of a friend, who happens to work at BCCH as a physiotherapist. She said she does a lot of pre-admission stuff for "heart-babies" (hospital staff tend to refer to any baby with a heart condition as thus. I think its totally cute) and has seen a good number of them post-op, too, and had some really encouraging things to say.

She said the scar, once they are all done, is about maybe as long as my pinky finger and nice and fine and clean. I had always imagined an open-heart surgery scar to be quite gaping and jagged, but of course they would do the best job they could! She also reiterated how quickly and nicely babies heal! Hooray!

It was really nice to just talk to someone kinda removed from our situation but who really new the hospital and protocols etc and who could just fill me in with information in a non stressful way. Not like the hospital staff wouldn't, but I feel that if I were to call them, it should be for a big enough issue, and sometimes I just like to ask little questions like "is there a fridge somewhere where we can keep food?".

Anyways, that was just really nice for my heart. I am feeling pretty good, trying not to stress and just looking forward to this coming Christmas time with my whole family coming down our way! Another hooray!

And we wait again...

It seems my morning isn't going as planned (does it ever? not really). I was so glad to get a call from BCCH this morning, from Dr. Duncan telling me that this week they had reviewed Piper's case. The only part that I was a little fuzzy on was that we won't actually get a real surgery date until about 2 weeks before it will happen. I really had it in my mind that this next phone call, I could physically mark something on my calendar and focus all my worry on that day. Nope.

It turns out, that Piper is now officially on the surgery waiting list (and like I mentioned earlier, it is quite lengthy at 70+ kids). This is for any kind of surgery, not all the same surgery that Piper will have.

Anyways, Dr. Duncan explained that, especially with this darned flu going around, they can go from having 5 empty beds to having none in a blink of an eye.

I do understand that part: that a waiting list involves waiting. Right. And he did mention that your chances of having your date moved around is about 50%. And he said "don't take it personally", it just happens that way.

So the "date" he did give me was just before the Christmas break or just after it, so late December, or early January. We will get another phone call early December from a surgery booking lady and she'll give us the low-down on when to come in etc. We will be coming in, say the week of the surgery to meet with the surgeon and the staff (nurses etc) and discuss exactly what will be happening during surgery. I hope we will get to see what kind of room we'll be in, and what is available to us. I would assume so.

But alas, it is more waiting for us. It could be another month now until we hear anything new. And once more, I am kinda torn.

Half of me wants this surgery to happen tomorrow, so we can get on with recovery and being normal. The other half of me wants to stay as far away from a hospital as I can.

And then thinking of surgery right before Christmas? This will be her first Christmas, and she might not be able to enjoy it... My whole family will be here this year, which would be so amazing if they could all be around for her recovery, but at the same time, I might just want a normal first Christmas with my baby.

In the end, I am grateful for a healthy baby right now, who is babbling like a banchee and almost sitting up and eating big-girl food and doing all the right things. Piper really does delight me daily and I need to let this dark cloud of surgery float away.

Matt has been an amazing husband during all of this, and has such a level head on his shoulders (even when I don't). He just loves being a Dad: I can see it every time he goes to tickle Piper's belly with his face or bounce her around in the air. It's almost a daily thing that he'll stop mid-walk and look at me and go "we've got the cutest baby girl". And then keep walking, or doing whatever he was doing. I am so glad we're on the same team :)

On that note, here are some family pics of us all at the park! We went out to take some family pictures of our friends and at the end, asked them to take a picture of us! This is what followed!!

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 :)