Getting better... slowly.

I think Piper is finally getting a little better. It's just been such a slow recovery from this cough, it seems unending. Now, she seems only to cough close to sleep times and it will usually wake her up. Though every day I think she coughs a little less. But I never do want her to be sick again... I know that is impossible, but so far she has had to miss her 6 month shots because of this (which would have included her H1N1 shot), which just makes me a little uneasy.

I don't want her to be sick in general. But if she is sick when she is due for her surgery, then she will be bumped back and we will miss her surgery date and who knows when there will be a spot available again. For the first time ever, I have to be really vigilant about keeping my self free of germs and staying away from sick people. And now that Piper is into everything with her hands, I have to be careful about everything she touches (I am normally pretty laid back about that kind of thing. I don't rinse off the soother when it falls on the ground - don't judge me!). Anyways, its not all that normal for me to be anal retentive. I'm not that good at it.

Anyways, BCCH called yesterday to ask if we wanted to immunize Piper for RSV (respiratory syncytial virus), as it effects most kids and acts like a cold, though babies with weakened immune systems, premmies, or babies with heart conditions are more at risk and are harder to help once they have it. It is a seasonal thing, and will be going around, but the hospitals want to keep the babies out of the hospitals that will be a lot more work (like those listed above) so they've got an immunization for them.

the virus in action!! duh, duh, duh....

Its a shot that will have to be given 5 times over about 4 months (boo), but will hopefully keep her safe enough. Apparently, only about 500 kids in the province get it, as its only offered to some. I figure if its the hospital calling, after looking at her file and pre-approving it, it might be a safe option to go with. I don't want her sick again.

Luckily for us, they hold clinics in Surrey at the hospital, so we don't have to make the trek out to Van. They should call us in a week or so?

This is a decision I feel good about. I don't have time, energy or patience to pull the "moral" card on the issue of immunizations. For me, Piper getting sick with something like this would be far worse whatever this shot could possibly bring with it. I need to weigh the pro's and con's, and whatever works better in Piper's favor wins.

Ok, I am off my soapbox.

Here is an audio recording of Piper's heart. It's not the best recording, but you can really hear the swoosh-swoosh of her heartbeat compared to a regular one. And its kinda a constant swooshing sound, no little breaks like with our beat, after the bump-bump...break, bump-bump... break.

If you ever get a chance to feel her heart, do try it. It has a much more frothy, scratchy kind of feel, opposed to our distinct lub-dub. We won't be offended either. It's going to change, so feel it now because it won't always be like that.

I think her heart beats a little bit faster that some, too, but just a tiny bit. Nothing to worry. about. And sorry if the normal heartbeat part looks a little morose, or gloomy. I think TV shows have made us associate the sound of a heartbeat with a sort of terminal idea... like, its going to stop any second now! I'm not meaning that. I just added it for comparison reasons.

Do try to enjoy :)

A little fevery

Poor baby has been up and down on the fever scale, so we took her to the doctor again (Matt was going anyways)- family doctor- and she gave her some amoxycillin to just keep her fevers at bay. It's this awesome pink fluid that tastes like bubble gum, and Piper seems to enjoy it. I would.

This girl has had more medicines in her short little life that I have had in my entire life! Its crazy. Or at least more hospital visits. Geesh. My doctor commented on what a good baby she was though, especially to doctors, as she sees them quite often. Alas, a compliment is a compliment!

Anyways, so she is doing much better now, without having to consistently be fighting a fever and is a pretty happy baby. And that usually makes for a pretty happy mommy and daddy, too!

Nothing like a Sunday afternoon... sorta.

Yesterday was a somewhat chaotic day.

We went to Vancouver, downtown, for a dear friends baby "party" (for guys and girls) and it was so incredibly lovely! We all seemed to have a great time. For a while...

At some point I tried to feed Piper and she wasn't interested, which isn't normal for her. She will almost always eat when offered. So I didn't force anything, but she wasn't quite acting herself. She then was getting really sleepy and again, not quite herself. So we left the party (our parking was running out anyways), and decided to head to see my sister and Matt's brother (yes, they are married, too) who live out at UBC.

Us with Vasia and Henry, awaiting their little girl, in 3-5 weeks!

Piper slept in the car for a bit, which she does often enough and is usually pretty happy after a nap. We got to J+A's house and she still wasn't quite herself, still not wanting to eat and just kinda lethargic.

So I figured, since we were already in Van, I might as well give BCCH a call, and it would be easy enough to come in. Talking to the cardiologist on call, mentioning her symptoms and her possible case of bronchiolitis, he said it wouldn't hurt to come in.

So we did.

And there goes the rest of our day!

It was actually not that bad. The cardiologist had given the ER front desk a heads up to expect us, and I think we skipped a bit of the wait, which was nice. We were quickly scooted to a smaller waiting room, where there were less sick people, which was really great (hospitals are made up of mostly waiting rooms. There is a waiting room for everything... kinda strange).

So we waited there for a bit (it was about maybe 3:45?), and then were sent to a little glass enclosed room with a bed and (thank the Lord!) a TV. A nurse popped in eventually and hooked Piper up to the SAT's monitor, and as usual, her oxygen levels were up at 97-99%, so nothing to worry about there. Then they had to take her temperature rectally this time ("more accurate" the nurse said, with a squinty face), and she did have a slight fever. Other than that, she was doing alright. They handled her case really well, and made us feel as though we were doing the right thing bringing her in.

The nurse kept saying what a nice loud murmur she had, since she doesn't get to hear them that often in the ER. But she didn't like how Piper's chest was indrawing when she was breathing and the rate at which she was breathing.

Anyways, long story short, we waited in the glass/tv room for the longest amount of time, in which Piper took a nap, we watched like, 3-4 episodes of CSI:somewhere and people kept checking in from time to time.

The doc finally came and examined her and thought to try a few things, like giving her a chest x-ray, because they thought she had bronchiolitis, too, and then a nebulizer with fentalin (??) in it and serious snot extraction (it had an acronym that I can't remember) to see if there was any infection.

A lovely Aussi nurse then came in to do the nebulizer (which is what people use for asthma, the little puffer), but it was in mask form, like the oxygen masks (except the ones at BCCH have a little face of a puppy dog on them, so it kinda looks like the kid has a puppy mask on- cute). So we did that for 10 mins, and I have to admit, those were not the most glorious 10 mins of Piper's life. The nebulizer shot out a mist/vapour and it made noise, and Piper had to breathe it in. It didn't hurt her, but her arms were held down and she was not impressed.

She basically cried the whole time, while Matt held the mask, and I held her and we all waited it out. Once we were all done, she gave some good coughs and prompty threw up all of her stomach contents on my pants (yes, my nice pants, since we were out at a party), and was pretty shaken up after that. The nurse said that the fentatlin was to open up her airways, and hence expanding her diaphragm, hence, pushing on her stomach, hence... barf. This was not spit up. It was a whole lot of gook, all at once. Bleh.

Then it was the snot-extractor, which they held her down on the bed for and fed a tube way up her nose. It thought it would go up like, 2 inches, maybe, but they just kept feeding that tube up/down her nasal passages! My jaw dropped. They suctioned some boogies out of both nostrils and that was all for the messy stuff. Then we could just hold her and wait to be called for the chest x-ray.

In that time, waiting, my lovely sister brought us some food, as it was about 8pm now, and neither of us had eaten anything since lunchtime. That was probably the best part of the day :) She brought a veritable smorgasbord that we laid out on the bed and all dug in. The nurses and docs who kept coming in all gave us "eyes" that said "wow... food, much?", but we didn't even care.

Yikes. It was a lot of drama. With the chest x-ray done, we eventually saw the doc again and he felt that everything was looking pretty good.

By then, her fever had come down, there was no infection in her snot, and the x-ray showed nothing negative. They confirmed she had bronchiolitis, and that it will just finish on its own. There isn't much we can do. She just has to wait. The doc said that if it were to have turned into anything worse, it would have happened in those first 2-3 days, but we are now on day 9, and it hasn't gotten worse, so its just a matter of time now.

The hospital doc said to check in with our local doc/pediatrician today to see how Piper is doing, so I went this morning (getting the last available appointment for the day! thank you God!). She said that even from Friday, when we saw her last, Piper was looking and sounding better. She said her chest wasn't indrawing as much her breathing was slower. She said to just watch out for blue spells (which we have yet to have), but on the whole, Piper seems fine. Just has to ride out this cough.

Unfortunately, she won't be able to go for her 6 months shots this week, as she is kinda sick. We see the pediatrician next week sometime, and we'll see how Piper is then, and he'll give us the OK to get her shots.

Oh, and then, speaking of shots, our doc asked if I had gotten "the" flu shot and I said I hadn't and she asked why? I said I wasn't even sure why not, I guess just timing and being able to get it done. I was just so focused on when I should get Piper's done. She said "just hold on one second, and give me your shoulder". She then dashed out the door and came back with a wee tiny needle and gave me the shot right then and there! It was so stinking fast and painless, I was shocked! That was what all the hulliballoo was about!? Really? Maybe I'll wait and see how I feel tomorrow.

Anyways, after all that jabbering: we are all pretty happy and fairly healthy, though Matt and I are both pretty tired today. It takes a toll on your nerves and your emotional state hanging around in any emergency room.

But, again, we are so delighted to be home with our baby and that she is doing really well. None of this seems to be a worry for her heart, so that makes me happy. And again, I can't wait until she can just be sick and not have it effect her heart. Just be good old-fashioned sick, no strings attached.

Sorry if this was kinda convoluted... I am running on low these days. I'll let you know how the next few days go!

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!!