Rain Gear on the inside...

It's been raining a bit, which makes me think to pull out my rain jacket... which makes me think of a question I had last time I was at the pediatrician: "what sort of material do they use when they fix Piper's heart?".  He wasn't 100% sure (as he is not a heart specialist), but he said they've used Gortex in the past.  Gortex. Like rain jackets!  Kinda funny.

Here is a drawing of what is wrong with Piper's heart and what the surgery will do to make it better.  

I looked it up in some of the info we've been given and apparently they use a material called Dacron.  Now, I haven't really read up much on it, but it is also used in the material for sails. Again, kinda funny.  If its not rain jacket material, it's spinnaker material!

Here is a video of Piper loving the rain outside... no Gortex yet, but it seems she just needs to be outside and most things in her world get better.  Then she drools like crazy and sticks her entire tongue out of her face.  Yeah.  Raining everywhere. 

Goodbye, Rat-jamas.

Last night was the last nigh Piper could fit into her Rat-jamas, as I call them.  These jammies I bought long before she was born and just loved them!  I don't know why (and my mom just shakes her head at me), but I love the character they have!  These rat-jamas say "spunk", which I think Piper has lots of.  Lucky for us, they are fairly gender-neutral, so we can always put them on the next kid.

But its these little things that remind me that Piper is growing all the time!  Growing nice and big!  All of her bones, brain and blue eyes are always getting bigger and stronger.  Luckily, her heart is also.  The human heart is about the size of your fist, so Piper's is about the size of a small plum (large cherry maybe?).  Can you imagine that?  And inside there are 4 ventricles and arteries and veins and all sorts of tiny things!  and somehow, they've got the instruments to fix it all, even at that size.

When we last talked to the cardiologist, he mentioned surgery in mid-November, but said he couldn't give us a firm date, due to emergency surgeries coming in all the time.  He said, that in the month of November, they knew of 20 fetuses due to be born with heart defects that need to be operated on stat.  20 unborn babies that they know of!  I mean, its amazing that they can know that pre-birth, but crazy at the same time.

I feel good now, not having known about Piper's heart defect before she was born, as I just would have fretted more, and there was nothing we could do about it then anyways.  So in a way, I do feel blessed that we didn't know anything ahead of time.  The fact that these babies will need immediate surgery once they are born tells me that it is very serious.  Again, I feel blessed that we were allowed to take our baby home and "fatten" her up pre-surgery.  We spent a day and a half in the nursery at the hospital after she was born and that was enough for me!  I would not want my brand new born baby in there recovering from serious heart surgery days after meeting her...

God knows just what He is doing, and just what I can handle.

Piper loves, loves, loves being outside.  She can be screaming inside for some reason or another, and I take her to look outside and she quiets right down and starts talking to the trees!  Yesterday, I could bring a blankie (for me) and a Bumbo chair (for her) outside an we read, talked and watched the cars go by for like, 2 hours!  She stares at the weeds and loves to get her hands in the flowers and grass.  This might get trickier as the weather gets yuckier.  Lets just hope she likes the deck...

Monday Pediatrician visit

So we are back from the pediatrician whom we see in Surrey.  He is  great little fellow with a lovely disposition (which completely makes up for his receptionists lack-thereof).  Our usual appointments were every two weeks, then he bumped us to every three weeks, and now we are down to every month because Piper is doing so well.  

We usually go in and he asks us how things have been ("oh, they've been great"), and asks if there have been any concerns or changes that he should be aware of, and usually there aren't.  Then he takes a listen to her heart (with his stethoscope with a puppy on it- Piper likes looking at that one) and makes a few marks on his paper.  Then if we want to weigh her we do, and then we are out the door.  It is usually pretty quick and nothing too exciting.

Today was pretty much the same (except parking was absurd! I parked in a neighboring lot and take that, Impark, I didn't pay!).  Piper was near nap time, so it was a bouncy kind of visit, but he asked me how I felt about Piper having surgery.

Initially I responded that I felt ok with it, and just kinda want this whole train to get going so I can stop worrying.  But he made it sound like, "you have the option not to, you know".

That is true.  As the parent, I have the option to say no to this surgery.  At the moment, this is all in our control.  Technically, Piper is doing just fine, in that she is growing and progressing at an average pace.  The reason we would still want to go through with the surgery is that what if at some point she stops progressing? or slows down in some regard?  I want to give her all the opportunities in the world and I don't want anything to slow her down, especially something that is within our power to fix.

Dr. Duncan (cardiologist) also commented that if she were born 100 years ago, and not had the opportunity for the surgery, she would have survived to be about 35-40 years old, and always been that person who couldn't over exert themselves and has to take things easy.  Maybe that person who had to always be careful, or who got sick easily.  We need to give our child the brightest future we can, given her circumstances.

She will need to recover for at least a week in the hospital (possibly more) and it is open-heart surgery, but she will be in the most capable hands in all the land.  And plus, no ones hand is as sturdy as God's, who will be there the entire time.

We feel completely safe going through with her surgery.

They gave her this bull last time she was at BCCH.  She seemed to really like the color, so they lady doing her ECG just said "she can keep it. It's brand new".  Smile.

Here is a little movie: Piper 2-4 months.  Lots changing all the time!  Enjoy!

 

More info... I guess

So just so you all know, there is nothing really the matter with Piper.  She is a very normal baby, otherwise.  A few things that might make her unique and that indicate she has a heart condition are things like:

- she sweats pretty fierce when crying and sometimes while feeding

- if you felt her heartbeat, it feels kinda frothy, or fuzzy. Not the same "lub-dub" as ours

- her breathing is somewhat shallow (not sure if that is just normal baby, or what)

The summer wasn't great for her sweating. It was kinda freaking us out a bit, but we just need to keep an eye on it.

Right now, some of Piper's favorite things to do are:

- stare at the pretty baby in the mirror (she always happens to be there!)

- wiggle on her "wiggle worm"

- growl and roll over

- stick both fists in her mouth

- laugh when you sing her a song

- kicking like a crazy baby in the bathtub (and crazy is nearly an understatement) 

- laughing at her bug toy that has flashing red cheek-lights, and it makes cutes sounds!

- staring at any kind of red lights (like the alarm clock etc)

All in all, a pretty happy baby. Though I think she might be starting to teethe right now... I am not ready for a teething baby.  Oh Lord. Spare me.

Ok, here is that heart picture that didn't really work in that last post.  This illustrates things fairly well (and I just like the colors!)

Anyways, do ask questions!  I don't know all the answers, but sometimes I can pretend I do.  Comments, comments!  I would love to know anything you know!

And here, I can plug in some cute videos of Piper as she is growing up.  Gotta love those, eh?

I'll download the other ones later... this kinda takes a while.

Should jet!  Piper will be up soon and we should get out and do something... Matt will be home early today, so we can maybe find some fun then.

Let's all get on the same page, then. Ok?

So, I've wanted to create this blog for a while now, and for some odd reason, I seem to have a fraction of time here- so here I go! Rush and make this happen!

The reason I've wanted to make this blog is mostly to keep family and friends updated on Piper's health, which, as I'll explain soon, isn't perfect.

The evening following Piper's birth (May 13), the nurses and doctors discovered that she has a heart murmur.  

Now, everyone seems to know someone with one, or who has had one etc.  I know my cousin had one, got it fixed and we've never really heard anything about it again.  And really, heart murmur's in babies are quite common, and totally and completely fixable.

Piper's exact heart condition is called "Tetralogy of Fallot" (TOF)- and Follot was a french dude who discovered it, so you say "Faa-low".  (cheeky french laugh here).

This essentially means (latin nerds tune in!) Tetra= four, and logia/logy= the study of...  Which means that there are 4 basic things not quite right with Piper's heart at the moment.

Here is a diagram of what Piper's heart looks like (on the right), and what yours and mine looks like (on the left)

In Piper's case, they call it "pink" TOF, meaning that the  pulmonary stenosis is mild and is distinguished with a loud murmur.

We've been told by Dr. Duncan, at BC Children's hospital, that "pink" TOF is really the best kind to have, and that, in Piper's case, she has an excess of blood flow.  This means excellent circulation and if anything, an over abundance of oxygenated blood.  We've gotten nothing but comments when we are in the Heart Center at BCCH, saying "Oh  my! What a glorious pink baby you have!". I think they see a lot of sickly blue babies there...

Anyways, surgery is necessary.  We're not so excited at the prospect of our child being operated on, but we feel so stellar about the staff at BCCH and know they will do the best job possible.  I really believe that we've got the best surgeons and doctors in North America right here in our province.  How cool is that?  And they can take care of our baby.

They haven't set a firm date yet, but it will be sometime mid-November.  But she does have a date for an angiogram for October 16th.  The angiogram will give the doctors a crystal clear picture of Piper's heart and know exactly how to go about when they operate.

For this, Piper will have to be put to sleep for a few hours (not looking forward to the fasting 10 or so hours beforehand.  Yeah, sounds like fun: starving a baby for half a day.  Not fun.), and they will put a catheder in her leg all the up to her heart, then shoot a dye in there so that they can take x-ray images.  

We feel pretty good about this, as it will be one step closer to having a healthy baby.  The angiogram is just an outpatient thing, so she can come that night, no problem.  But that is the next biggest thing on our plate.

Well, I should go... I can hear Piper waking up.  I'll try to post some more pictures and let you know what we find out at the pediatrician next Monday.

Much love!  M+F+P