Day 4: two steps forward and...

Ok, so I didn't feel like typing all of this so... I hope this works. If it doesn't, just look at the photos... sorry.

Watch this:

Then look at these pictures! ** some a little graphic**

Daddy checking out Piper's incision. No more bandage, just steri-strips.

Matt holding Piper for the first time in 4 days!
First feeding through her mouth in 4 days! She's had milk, but just through her nose...
Our nurse picking up Piper in her jammies that didn't really fit...
Holding Piper-baby! That blanky on her chest is to brace her when she coughs, so that her incision doesn't hurt too bad. She now has a heart shaped pillow that all "heart babies" get.

Using her hands!
Checking things out...
Tubes out! And you can see her incision. The stiches are on the inside, and will heal up awesome.
New jammies that her aunty brought in for her. Oupsie Mommy!
Her last plug-in! Only one IV in her foot for some meds, but that will be going soon, too!

Day 3: hardest day thus far.

Today was just plain long. We got to the ICU tired to start, so it just automatically felt like the day would be long.

Overnight, Piper had let go of a lot of blood via her chest tubes, a whole 90mls, which is quite a bit. It was probably just a little clogged over night and finally let go, but it just meant that today they wouldn't take out her chest tubes because of that. There might be more to drain.

Oh well. Not all that bad.

They had to give her some blood over night, because her red blood cells were low (might be because of the blood she lost through her tubes). It was strange to walk in this morning to see her hooked up to a little baggy of blood. But they just kept it there until her hemoglobin was back up again.

She has been peeing enough, which is good, nothing too worry about there.

Next was the extubation.

This turned into a much bigger deal than I thought.

The RT (respiratory technician) came and got everything ready and got the tube out in no time. That part wasn't dramatic at all. It came out no problem. They just really wanted her to cough some of the lung garbage out. You could hear it in her lungs and in her throat but she was still a bit too drugged to really want to cough.

She did start a really mini cry. It was so tiny and weak, she sounded like a little kitten! Or a mouse. It grew a little bit more and more with all of her thrashings and wigglings. This was hard to watch as she was squirming so bad and making crying sounds and looked like she wanted to be picked up so bad. She would turn over with her arms out towards the side and I just wanted to scoop her up so bad! It really looked like she wanted her Mommy.

But alas, not time yet! With a lot of pats on her back and front, with saline up her nose and down her throat and some gases being put in her face all in an attempt to make her cough and loosen some of that lung phlegm .

At one point, the RT was dripping with sweat trying to work on Piper, as our nurse was half holding her, continually shaking her. Thinking back on it now, it did look like they were really jostling that baby.

At some point her heart rate was at 211. Oh my. That is fast! Her temp was also high, but that was from working pretty hard.

Anyways, she really didn't end up coughing, but got really close. They suctioned her a few times and got some of the stuff out, but decided to just give her a break and let her rest.

Phewf. That was the first time I wanted to just walk away and not know what was going on. I really wanted to, but I wanted to be there more, I guess, even though it was hard.

She now has super good for you oxygen that is in her nose, and it was at 100% to start off and when we left tonight they had decreased it to 70% and they will keep bringing it down so she can do more on her own.

Once that was all done, her temp was still high, so the next job was to get her cool. Her temperature was at 39 at some point, again, too high.

She got this cooling bed thing, which is like a blow up mattress but with a bunch of tiny perforated holes that blow out cool air. It also makes great white noise, so this thingy calmed and cooled her down really fast. And it just looked so comfy.

Those blue arm bands are just to keep her from grabbing her tubes now... I think they kinda look like super-hero pieces that could hold like poison darts or GPS or something like that.
I think she looks so much more like herself without the breathing tube. I think she was happy to have it out, too, and to be done with all the cough-cough drama.

Then, as we were talking to another mom who's baby also had TOF and we were comparing notes, Piper had a nice little awake time. This time, she was really looking around at us. She was pretty dozy still, but could look at both of our faces and really kinda take it in.
Her awake times have only been a few minutes at best, but at least they aren't the same crazy wiggling times when she is fighting so hard. Now it seems like she is just slowly becoming aware of what is around her. She is still on morphine, so she is still pretty dopey, but it is so nice to see her eyes!


We are loving our nurses :) All the ICU nurses have been great and we see the cardiology and hematology nurses on the weekdays. There are lots of good people taking care of us. We talked some more with the nurse Piper today about being a grown-up Piper and how she feels about the name. It was pretty neat.

Here is our ICU nurse who has been so great. She told us that when Piper does finally cough (as she will much more when she resurfaces on this planet), we should hold a stuffed toy onto her chest as a brace, to help with the pain.

We had a good few visits today from family and friends and that was pretty nice. We even got out more than once, which I think is really healthy. We walked somewhere for lunch and then got taken out for dinner, which helped me feel really normal. I got a pretty martini :)

Here is a new friend for Piper. It is a ball-shaped giraffe. But these toys are donated, and even given little individualized notes from today. How cool! He is such a happy giraffe ball.

All in all, things are looking pretty decent. It looks like Piper will be in the ICU for tomorrow and probably be sent up to recovery on Monday. There is a teeny-tiny chance she could go tomorrow, but unlikely. That is ok. If she needs more attention for a while that is ok.

It is a bit tiring being in there, but I know she is getting what she needs. Hopefully tomorrow, we'll be able to hold her. I think that would really, really, really make my day. I am really starting to miss her...

Day 2: more recovering, lots of wiggling!

** some images might be kinda disturbing **

just a heads up.

So today was a pretty long day in the ICU.

Not too much happened really, but progress all the same. The day started off pretty nice, with cinnamon buns and a full nights sleep for me! I woke up to the birds singing... not a baby crying. That part was nice. I felt pretty rested.

I did feel anxious to get to the hospital. I didn't feel worried, i just wanted to be there and see my baby. The hospital never called during the night, so I assumed all was well.

And it was :)

Piper had a great night, full of rest and no surprises. We arrived and took a look at her, and then I promptly went to go and pump some more milk for her. At that point, they hadn't fed her anything yet.

It was long into the morning when Piper sorta started waking up on her own a bit. It was just a slight wiggle and then her eyelids kinda fluttered a bit. She was stirring all on her own. It was so nice to see my baby wiggle. But she really needed to stay still, and they soon had to put restraints on her arm so that she didn't grab at her air tube.

She has always been a pro-wiggler.

The meds they were using the sedate her would work for hardly any time at all and then she would be wiggling again, and the nurses were all surprised with how strong she was! Anyways, they used some things to keep her calm and they seemed to work on and off. She had a good few rests during the day, which was good.

They decided to wait until tomorrow (Saturday) to extubate her (take her breathing tube out). Her breathing isn't quite strong enough, and she hasn't peed quite enough, which means she still has some fluid retained in her body and in her lungs. It doesn't hurt to keep the breathing tube in, it just might be a little uncomfy for her as she is waking up more.

Her temperature has been a little higher today, hopefully not a real fever, maybe just something low-grade from surgery- totally normal. They have kept her cold with some ice-packs and some Tylenol.

Her saturation levels have been lower than normal. Sometimes at 80% when they are normally at 97%+, which might just be due to her breathing not getting enough oxygen. But they aren't worried.

Her heart rate has been a little lower than yesterday, but a little on the high side, like 140-150.

Her chest tubes are still draining, but hardly anymore, which is good. That means all the blood is almost drained away. The chest tubes look the scariest, but they really aren't.

I laughed a little, during one of Piper's wiggling's, as she was all over the place, and one of the nurses just came up to her saying "monkey!" and tickled her belly, right below her chest tube spot and right above her belly button. She was so comfortable with it. I still feel a little frightened to touch her so casually. You know how babies feel when they are newbown, and you seriously worried that if you handle them not quite right, they will actually break? That is sorta what it feels like with Piper right now. And I haven't even held her! I think she will be a little more touchable when she is not so plugged in.

Otherwise, I try to touch her as much as I can, stroking her head and talking to her. At some point today, she had my finger in her little fist. It was nice to feel her strength :)

Here are a few new friends for her hospital adventures.

This guy is Twinkle Mouse (though Matt is convinced he looks like a rat... ) He came from some great friends, the night before surgery. He is perfect for babies to grab, and just so cute :)

And this guy was from our friend who is a physiotherapist here at BCCH. She said she's seen kids with these guys hanging from their IV poles and they are just so cute. How thoughtful. He is so soft and pink :) Piper will love getting her paws on this buddy.

Otherwise, we've had a pretty slow day here, not bad, just long. We were initially a little bummed that Piper had to remain intubated for the rest of the day, but we expected it I guess. She will be all that much stronger in the morning.

A few more kids have been admitted to the ICU now, so it is not quite as quiet, but still nice. It was interesting to see people who were just one day behind us: antsy in the waiting room and hesitantly coming into the ICU, wringing their hands, looking for their baby. Did we look that like? I already feel like a seasoned pro in here, I feel like I should be giving those parents some advice, from my wealth of experience. Ha. All of our experiences are pretty unique.

Our experience here has been great, as usual. We got a good diagram from the cardiology nurse about what actually happened in Piper's heart, and I will have to share that at some point. But not right now. Right now, this laptop is burning my legs, and my baby is sleeping so soundly and I am getting a little sleepy, too. We might have a bit of an early night, sticking around until the new nurse is here and then maybe take off.

Then tomorrow we'll get here when we get here and hope for some more improvements tomorrow!

Day 1: Post-op, beginning of recovery

*** Some graphic photos***

not too graphic, just might look a little sad at first, but I promise it's all good, ok?

I will try to sum this day up as briefly as I can.

We had a great start to the day, no real hiccups. Last feed at 3:33am and we were good to go. We made it all the way to the hospital, and did all the pre-prep stuff with a pretty happy baby. She didn't get fussy until near the very end, and by then, the nurse was coming to give her some sedating medicine. The medicine smelled just like Tootsie Rolls! Not bad. Piper hated that part. But she quickly became really sleepy and groggy and kinda fall-over-y.

Anyways, she was soon covered in kisses from Mommy and Daddy and whisked away from a nurse to the operating room.

Then, we really just needed to waste time for a while.

Went for breakfast.

Went to the mall.

Went to MEC.

Then we were back before 12pm. We didn't wait long in the ICU waiting room until the surgeon came in and told us a lot of information that I am going to have to get run by me again. The short version is basically, everything went well, though they discovered Piper's hole in her heart was actually more significant than they had thought. That explains why it was so loud form the outside. There were a few other things, but she got an extra patch and all of her muscle that her heart had built up was cut away and some arteries made wider and all looks good.

I will try to get a picture or something on what actually happened. The surgeon introduced us to a bunch of new words. I'll try to wrap my head around it later. Everything is all good and fixed. That is the end result.

This is what we first saw when we came into the ICU. Itty bitty baby on a big bed.

Our first nurse taking good care of her.
Her bunny-bear keeping an eye on Piper.
The ICU was actually not really busy at all. Maybe 2-3 other babies, but they were around the corner, so we really felt like we were on our own.
Piper is intubated and has a feeding tube in her nose. She is on a cooling blanky with pockets of water that they can heat up or cool down as they need. For a while, her temp was down at 33.5, but then her heart rate goes down, too, which is good, but her little arms were so cold! They want it on the cooler side, but maybe not that cold anymore...
That apparatus at the bottom is a pacemaker. There are already pacemaker lines just placed on top of her heart ready to start it up if need be.
Check it out! This nurses name is Piper! She was so thrilled to meet a baby Piper!
We made sure to talk to her, even though she isn't responding, I think it's important. We aren't supposed to touch her too much, as it gets her heart rate up. They want to keep it as low as possible, and it was actually quite high most of the day (150-160's. They want it to be closer to 120's).
At the moment, there isn't much for us to do. As she gets better, we'll be able to help out more. Now, we're just here to be here.
Lots of little labeled tubes. Good thing they know what is going on because I can't tell...
More little valves... Plugged into so many things, but they all serve a perfect purpose!
She really does look like she is sleeping rather peacefully. Her breathing is completely controlled by the ventilator right now. You can see the bandage, too. They will change that dressing tomorrow, about 24 hours post-op. I do want to see that... I am curious.
She is on a continuous flow of morphine and some fluids I think? They will try giving her some of my milk soon. You can see the blood pressure thing, too, and there is an IV in her foot and hand I think? And also a line in her neck, right into her jugular.
Here, you can kinda see her chest tubes. They are draining any excess blood from around the heart from surgery. I never really saw any blood move, but on the floor, there was a machine that was gradually filling up. By the time we left, she was draining much less, which is good news! I know the chest tubes look kinda gross and scary, but once they are out, they are the tiniest little slits and the scars disappear in no time. Once they can remove the chest tubes, that is a BIG step towards recovery. Probably won't happen tomorrow, but maybe closer the Saturday.
At BCCH they are so good about making your child feel good, so as soon as I brought out this bunny-bear, they used it to help prop her up right away. I know she loves how squishy this buddy is and she loves her little nose and floppy ears. She'll be playing and grabbing her in no time.
So this is our journey so far. I hope to keep this space updated as regularly as I can. I think photos speak stronger than words, so do ask questions if you've got one. I will try my hardest to fill in the blank.

Tomorrow, we'll see the hematologist again and see how much G-CSF to be giving now. Apparently, her pre-op blood work had her neutrophils at 18.0! Holy cow! Maybe a bit too high, but still wow! We'll see where she is at tomorrow.

Oh, and I am so glad she is not in one of the isolated ICU rooms. You have to scrub up every time and always wear a mask. I like our spot in the corner. We even stole another glider from one of the other stalls. Bingo.

Ok. Now onto our first night without a baby. We'll see how this goes...

Tomorrow is gonna happen.

Now that we are sitting on the edge of this actually happening, things do seem a bit too calm. A strange and unearthly serenity is hovering over us right now.

We've got the house cleaned, bags packed, snacks ready and every body is fed. We've got a movie downloading to watch tonight and we'll set an alarm to wake me up for Piper's last milk at 3:30am.

This is happening.

As we were told, we bathed Piper with this sponge tonight:

I am not too sure how much cleaner she is using this one that other soap. I mean, we wipe her off with our towels, then into jammies and all sorts of kisses in between there. Oh well, we're doing as we're told! I think it might have stung her eyes a bit... she wasn't too thrilled.

I don't know what to say. We are both feeling pretty good. We've been playing this over in our heads for a long time now. Maybe we really are at peace with this whole procedure. I am almost happy for all this jerking around, as now, I feel no hesitation, no wavering. I feel strong. I feel brave. This is how it is supposed to happen.

Today we got some blood work done at BCCH and it was fine. Or, they haven't called us back, so I am assuming all is well. It better be. I am still waiting until 10pm, as the hematologist has called us at 9:45pm before.

Matt worked on the car a bit, so we went to join him. Piper discovered the front garden. Oh man. That kid loves the dirt. She scooted all over the place. I guess that is ok right now... doesn't look like much yet. As long as her soother stayed in, the dirt stayed out. I'm ok with that. We got to see the recycling truck go by and even some neighbors stopped over. This weather is awesome.

We've had a really low-key night. Pizza, with leftovers for lunch, some tidying and a few visits from friends. Nothing too fancy, nothing to emotional. Just life.

I wanted to leave some suspense here. I have been collecting little things that are for Piper for after surgery. Nothing much, but I thought they were important. You'll see them soon enough, but I wanted to give you a hint... and maybe you can guess!

Last family picture at home for a little while! We are feeling all the encouragement from everyone and we really are feeling positive. I am not just saying that because that is what I want to hear. Right now, at this moment, I am glad this is where we are.

See you soon! I'll keep you as updated as I can.

Piper's surgery starts at 7:45 am. We should be able to see her by 1pm.