Taking big steps.

I'm feeling a little sentimental lately, as I watch Piper grow so big more and more each day. I'm sure most parents have moments when they stare at their child and just marvel, something like this: "you're two? How on earth did we make it this far?!" or as you quietly remember how they used to fit cradled in your one arm. Alas, Piper is growing up.

These are all good things. I love watching her figure her world out a little more each day. She is putting words together now more than before and is really understanding a lot of what is going on. She even told us twice today that she had to use the bathroom and it was a success! And she just happens to be wearing jeans today that make her look like she is ready to go to grade 8 (must the flare or something). The lack of diaper-bum seems to make her look really grown up.

I love being able to communicate with her, to tell her what a good job she has done finishing her eggs, or to tell her we have to throw these Cheerio's in the garbage now, or asking her to put her own socks on. Of course, and again, I am sure most parents can relate, with this new ability to communicate comes her strong will. We have certainly had moments of frustration trying to get each other's message across. She is trying my limits and I am learning what really is important in the big picture; when to give and take and when to stand firm. I get little doses of the "average" two-year-old every so often, and I don't always know how to handle that.

But most days, most moments are pretty serene and, well, normal. We are both learning, always learning. I'm so delighted to spend these moments with my girly, as we're each figuring this whole thing out.

Anyways, Piper had a nasty some kind of sickness this last week, with throw-up all Sunday, then diarrhea until Thursday. She hardly ate all week, and I do think she is a little skinnier for it. But now seems all better. So glad to have my normal kiddo back.

We head to the cardiologist this Wednesday for one final check-up before they hopefully send us away for a good 6 months. She'll have an echo and an ECG and then we'll see the cardiologist and nurses. I am not expecting anything crazy to happen. I think her scar is looking fantastic, with no infection and is nice and smooth now, no stitch bumps. We still try to lift her up from her bum, but we are 4 weeks post-op now, so only 2 more weeks to go of that.

Everything looks good from our end of things. Again, you would never be able to tell that Piper has been through all of this, except that every so often, she'll lift up her shirt and point to her incision and say "scar", in a very matter-of-fact tone.

We're so glad it's over, and we are moving forward. Can't wait for the 6 month news on Wednesday :)

Good to Go.

Just a quick little note:

We went to the hospital this morning and saw the surgeon and he said Piper looked great, and doesn't see any reason to be worried. He looked at her incision and listened to her and asked some questions etc. All good. It was one of our quickest visits to date :) In and out in just over an hour. The ECG she had was a little traumatic, but I think for her right now, anything back at the hospital is. Oh well. That will keep changing.

We see the cardiologist on the 22nd of June, and she'll get an echo done then, just to make sure everything is looking as lovely as it was post-op. Then we will get our 6 month pass! hooray! And hopefully after that, like the surgeon said today, we'll get the 1 year pass, which means really good things!

Here's hoping!

One week being home: Post-op 1 week + 3 days.

here are some photos from how our house looked last time surgery came around.

It has been so nice being in our own space now for a week. Everything is starting to feel a little more normal most days. If you were to ask my how Piper was doing, I would say "really great, actually, all things considered". And she really is.

She is back to sleeping through the night without the help of Tylenol (we haven't had to give any in a few days now) and takes a nice mid-day nap like she used to. She is happy to play with her toys, though still asks to watch "shows", just not as often (and we definitely give in here and there). The last few days, she has been eating normally, too, which is such a relief. She doesn't eat as much, but she is starting to have full meals now (as much as a 2 year old eats a "meal").
We have all been doing pretty well, adjusting and giving her and ourselves a little more grace than usual. I know I need it sometimes. It is hard to hoist a 25 pound kiddo up from the bum... ahk. Try it next time, trying to get your kid out of their car-seat, or out of a chair or stroller. It is not so easy. But we are managing. It's hardest to tell people mid pick-up "oooooo, don't pick her up by the arm pits!". They are just trying to love her. Anyways, a little thing in the long run.
Her scar is looking pretty good, too. We don't put a dressing on it anymore, as the tape seemed to be bothering her skin. She has been free of for the past few days and it seems to be doing just fine. We just have to keep it clean and dry. We still give it a good saline wash every night and keep her hands off of it. That is a little tough, as she loves to lift up her shirt and point to her belly button, and then she sees her chest-tube scab and says "scar" and kinda winces a little sometimes. That is the ugliest scab right now, and looks like if it were to open again, it would easily become infected. But her paws are always getting to it. We try to tell her just to pat it, or rub it through her shirt, but mostly just leave it alone.
We're also calling it just what it is: scar. It's not an "ou-ee" or "boo-boo". She can say scar and knows where it came from, so we might as well say it. She can sorta say "surgery" and sometimes references it, too.
You can sorta tell from these photos that the incision is slightly raised, but that will fade away in no time. The stitches underneath are still dissolving, I think, so it will flatten out soon. There is just a tiny bit of bruising around the area, but not much. The most annoying part to look at now is all the tape stickiness that isn't going away. Oh well... just gotta wear that skin away, I guess.
We went to my family doctor this week for a check-up and to remove the stitch at her chest-tube hole, and to take a general listen and see how things were. Everything seemed to look good, and continues to look pretty straight forward. Also, the nurse-practitioner (NP) called from BCCH just to check in and see how Piper was doing, which was nice. She just wanted to remind us that her incision could easily get infected and to keep it clean. Right-o. Will do.
For now, we just need to keep on with what we are doing. And we go back to BCCH this Tuesday to meet with the surgeon and the NP to see how things are going. She will get a chest x-ray and an ECG, but probably not an echo... that is just me assuming. I think it will be pretty straight forward. They will most likely tell us to come back in 3 or 6 months and go from there. And actually, we will still meet with the cardiologist in another few weeks still (yes, the cardiac surgeon and the cardiologist are two different people who need two different check-ups. Not entirely sure why). I am not worried about something getting missed here.
Again, we've just felt a great sense of love and support this last week. It's been such a gift having all of your support and prayers throughout this journey. Thank you for all the hugs, thoughts and food :)

Just for interest sake, here is a glimpse from last time at how Piper's scar was doing first time around. You can tell already here that the top of her scar was infected... boo. It does get me a little worried for her chest-tube hole, as it is looking a little red around there. Hmmm... time will tell!

Home Girl: Day 4.

The morning started out pretty early, with Piper up around 6 am, needing a sip of juice and later a drink of milk. I decided to just wake up and get dressed too, considering that rounds would most likely get done at some point, and I hate being in my jammies for those... I got some Tylenol for Piper, too, as she seemed ready for it.

We had a really slow morning, as it was Saturday and things moved a little slower. But soon enough the flurry of medical people poured into our room, all looking at Piper and confirming our thoughts that they would be sending us home today. Her chest x-ray looked good from yesterday. Still a little bit wet, but that is why she will be kept on a drug called Lasix to continue to draw the fluid away from her body, and for her to pee it out.

Soon enough after that, the paper work had started to get us out of there. I really didn't think it was going to move that fast! We got a little bit of teaching from our nurse on how to change Piper's dressing and how to clean her incision. All went well. We got a bag loaded up with bandages of all kinds and a few papers for this and that. We will have to check in with my GP this coming week and then we'll go back to the hospital next Tuesday for another chest x-ray and an ECG. Maybe no echo? Not sure. That might come in another few weeks.

Piper seemed to be in pretty good spirits, with absolutely no stickers of any kind on her anymore (we could finally remove her little probes for measuring her sats and HR etc). And with a new dressing from her parents, she was ready for some clothes and to wander around her room as we gathered all of our stuff. We were actually out of there pretty quick. Rounds were around 8:30 and we were heading out the door around 9:30am. I really expected to be home after lunch. Hooray! This way, we were all home before 11 and we able to have an early lunch.

Really, it was a pretty anti-climatic day. For now, we just need to keep on top of her Tylenol and once a day Lasix. And now onto recovery!

So far, being home, Piper has fallen into some of her old routines, but moving a little slower. It seems a little tough for her to get up off the floor. She can do it, but she tends to stay down once she is on the floor and keeps herself entertained down there as long as she can. She is still loving to watch shows on the iPad, which we can hardly say no to, as she starts to cry and get all worked up and I don't think that is a good thing right now. Whipped parents. We are both hoping that with more and more mobility and comfort, she'll give up on watching so many shows. For now, it's fine, as she stays calm and happy.

We all had a really good nap this afternoon, which was so refreshing. There was no beeping and no random people poking their head in your room to check on things. It was just sleep time :)

Piper's voice seems to be a little different and some of her words are definitely a little more slurred, but I am hoping that will just come back with practice. She is playing some of her old games, and finally ate a bowl of cereal! Her first chunk of carbs since Tuesday. She's only had a bit of yogourt and lots of milk and juice since then. I think tomorrow she will want more food more often. We'll just follow her cues and roll with it. I have never heard of a two-year-old starving themselves.

For now, we just need to keep an eye on her incision and on some of her behaviours to make sure everything is healing up nicely. I am expecting everyday to move a little more forward all the time. We (and others) need to be careful to not pick her up by the armpits for about 6 weeks, and to keep her activity level low-ish, or at least reasonable: no more swimming or gymnastics for a little while. I think the best thing for her right now is routine and maybe seeing some of her friends.

Tonight we were able to give her a bath to finally get some of the sticky and slimy stuff off of her from the hospital. Her hair got so gross the last few days, and it's hard to wash her without getting her incision too wet. We can get it wet, but not submerged. Anyways, we are doing the best we can.

Matt and I are just relieved to finally be home and be in our own space again. We had some fantastic friends come over and drop off food and clean our house, which is the best gift ever! Wow. I nearly cried. And Matt's mom was a big help with laundry and keeping an eye on the cat. We've felt so well taken care of through this whole process. We are ready now to start to feel a little more normal, too. I know these next few days and weeks will be a little tough, as Piper will be a little more high maintenance, but we'll take it one step at a time and see what she needs most. I know picking up 25 pounds off the ground is a little tough right now with my pregnant belly not getting any smaller. This time around, there will be some changes... yikes. But Piper is that much older, too, and doesn't need to be picked up quite as often. I think I just need a good rest and I'll be feeling a little more up to the challenge.

But for now, I am just wallowing in the fact that we are home as a family 4 days after Piper had open heart surgery. Wow. I am just constantly in awe.

ps. I added photos to the rest of the days we were at the hospital: Day three, Day Two and Day One.

Impressive Girl! Day Three.

Daily notes

Friday May 20

Day started off with rounds. We had just gotten up 2 minutes earlier, just enough time to roll out of bed and look semi-presentable.

Rounds were good. Talked about taking out chest tube and pacer wires and get her moving. Thinking to send her home tomorrow.

Had a nice, normal awake time with lots of bubbles and even ate a bit of applesauce. Tried yogurt, but too interested. She isn't too interested in food, just the occasional drink. I think that will get better once we're home and doing normal home things.

Around 10 am, she had a cool ECG that said that her heart was ready to be unplugged from the pacer wires. Usually when they those out, they take out the chest tube, too. And it also means that she is almost done with her IV, as she was just getting antibiotics to keep infection away from her chest tube. So they'll lock her IV off, but keep it in. She doesn't seem to mind it too much, as she does have one hand totally free.

Then to take her pacer wires out! Always kinda interesting to see wires just keep coming out of your child, with a lady tugging on the other end. When the doctor first pulled on them, Piper reached up to her heart, as if she felt where it was being pulled from. Very interesting. They almost had to leave one in as it really didn't wanna come out! But alas it came out. Hooray :)

Then the chest tube, which always surprises us to see how much tubing was actually in there. Out it came, with a bit of fuss, but it came out all right. Still, kinda gross. Matt had to sit down for a bit while I held up the iPad so Piper could keep watching the show that was keeping her pleasantly distracted. Soon after that, we needed to switch spots as I needed a seat. The process just seems uncomfortable, and I'm sure I'd be squirming or worse if it was happening to me.

Now she has a new dressing that we will keep changing for the next 10 days to keep it clean and dry.

Then we all took a really good nap. So badly needed.

She woke up a little growly but ok. There is constantly someone checking her out for something so she's allowed to be a little upset.

We had lunch and then off to her echo downstairs. She did amazingly well and needed no sedation. And now that we've talked to all the cardio team, they say it was perfect and exactly what they expected. Hooray! Again, all of this news sounds like they still want to send us home tomorrow :)

She seemed to be a little backed up still and hadn't pooped since yesterday, so that is why she was a little cranky. We made sure to get her moving and sure enough, out it came. She was a new person!! We went to the toy room and she played with all her favorite things. It was nice to see a little bit of the girl I'm used to :) Of course she was tired out before she normally would be, but otherwise, did really well.

Piper still isn't eating much, but drinking milk and juice happily.

Had another good nap and woke up happy but pretty cuddly. Not too brave.

Went for a chest X-ray. It was so fast!

Tried bringing her to the play room again, but this time she wasn't too interested. She only wanted to cuddle Matt. Then we went out to the patio to get fresh air, but she didn't like that much either.

Matt's sister and hubby stopped by with dinner and we ate outside. Piper was pretty shy and quiet and still didn't eat anything. But once we brought her back to her bed and she got a new diaper, she was a new baby. She was chatting and asking for juice and stickers and telling us all sorts of things. Her words are pretty slurred but we can get the important ones: soother, juice, milk, no, show.

It's been a slow but easy day. We've all rested a little and feeling like we are definitely going home tomorrow. We could almost go right now, but they just want to monitor her one more night and then send her off knowing she's doing just fine.

We'll most likely come back on Tuesday for a check up and take a look at her incision and to remove two little stitches above her chest tube hole.

Took a nice break in bed and then we went to play in the toy room for a bit. Again, after a good play, she had a good poop! Victory!

Once we had walked back to our room with a popsicle, she played for a bit standing up and then started gently touching her chest. Matt asked her if it hurt and she said "yeah". And then he asked if she wanted to lay down and she said "yeah" to that too and started heading over to her bed. Once she was all tucked into her bed, she was nice and quiet and happy.

All in all, its been a pretty easy day. I've found recovery to be way easier than the ICU time this time around. That was very much the opposite from last time. Tomorrow should be a pretty slow day, too. We'll probably spend a lot of the day waiting to see doctors etc and then to get some extra teaching from our nurse. We will get taught how to change her dressing, which we'll have to do every day for 10 days once we're home. I just have a feeling that all of that will take a while. I'm not expecting to be home until after lunch. Just a wild guess.

But today was good! Lots of progress in the right direction. And we're almost home and able to get back to normal!!

Amazing girl: Day Two

Daily notes

Thrusday May 19

Matt's birthday!

Got to see your night nurse Jane home, got here around 6:30am. She was so sweet. Put up with Piper for a rough night. The doctors said "Jane earned her keep" and continued saying Piper was feisty and wild. Thata girl!

She is no longer on midazolam and just on a bit of morphine and lasix and Tylenol.

What really made her feel better was milk. She was just so hungry!

Came back in the morning to see P with a full belly. Apparerly she would clack her arm boards together asking more "more". And would follow the nurse with hawks eyes as she left to get more milk.

The bed rails had to be raised because P was trying to get up and out of bed, and finally sorta awake.

She has a bit of blood in her urine but they figure it's just from all the wiggling. Not too worried.

BP has been much better, normal.

HR good.

When she gets mad, apparently her sats can go right down to 55 or so and she can look a little blue. Again, they figure it's just because she is mad at the world. Not too worried. Will keep an eye on it. Otherwise, her sats stay high, 96-100%.

Gonna keep the chest tube and pacer wires in for now. Will remove the foot IV so she can maybe walk around later.

@ 11 Piper got an anti inflammatory and that seemed to really help. She finally really rested peacefully and then when she woke up, she was not sad. She wasn't happy, but she wasn't sad.

She asked for milk and a sticker and seemed to actually look like herself.

Got to remove her foot and right hand IV and she loved to be free. Even tolerated it when they were taking it out she was fine. She understood it was for good!

As soon as she was free, she wanted to just pick things up and use some of those fine motor skills. Then we gave her the corner of her blanky and pulled it right over her face and fell asleep. So cute.

She has totally calmed down. She seems a little more like herself and we can understand her a little better.

We got moved upstairs!! Right around 2:30pm and we even got the same room as last time. Feels so great to have our own space. We've got a great window with light and our own bathroom.

Piper is happy to sit up in bed and knows what she wants regarding food. They've said now to offer her simple things like crackers and applesauce, but if she wants to eat what we are, they said to go for it. The sooner she is back to normal, the sooner we can go home.

Her cough from before surgery still sounds pretty bad, and I think it does hurt her to cough.

Sounds like she'll get an echo done tomorrow. Should be neat. Just hope we don't need to use any sedation.

Piper will have her vitals checked every two hours. Groan. Not looking forward to that. She hates having her BP and temp taken.

She has a little bit of a grunt with all her breaths but they think it's just discomfort from the tubes.

Seeing lots of people come upstairs from our pre-admin day. That's encouraging. Such a good group of people here!

Overall, a much better day than yesterday. So far, recovery seems a little easier than I thought it would be. Tonight we need to let her sleep and keep fluids up.

Everything is still looking really good to come home on the weekend, then maybe we could still have a nice long weekend as a family!! Daily notes

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Tough Girl: Day One.

Daily notes: these are notes I've been taking on my phone all day and I can quickly update this blog. I want to keep you all informed, but this one might be a little brief and fragmented. We are pretty tired tonight.

Wednesday may 18

• Got IV and midazolam and was pretty good, to get her sleepy and happy in the day care room
• We were able to leave at 8:20.
• Went for breakfast pancakes
• Then to starbucks and then mec then to oakridge. Looked at watches.
• Back for 11:30. Realized we forgot our lunch. Dang.
• Waiting in ICU waiting room.
• Saw surgeon at 12:30. All good. Bit of a late start.
• Lots of muscle build up again, cut it all away and put a patch under it.
• Sealed up the 5mm hole between her atria, because she doesn't need that pressure release any more. She was a true double outlet right ventricle. They did use bovine pericardium for her patch. Yes, that's cow parts!
• Gradient was around 15 not 80 any more. Low enough down they aren't concerned.
• We'll see if her muscle building button is turned off or not: see if her body just wants to continue to keep making those same bundles... hopefully not.
• Off breathing tube in the OR, no need for blood.
• Saw piper around 2:30 and she was already moving around a little upset. They don't like her BP that high, around 130/70, so we need to keep her calm.
• She is cranky because her sedation is wearing off and she is uncomfy.
• Added some calming drugs/Adavan and doing better.
• Saying "all done" and asking for milk.
• Eyes open sometimes but mostly sleepy
• Music therapist came and sang some songs. Very sweet. Twinkle, twinkle little Piper.
• IV in both hands and foot. No central line in neck, arterial line in her arm that soon came out... oups!
• Lots of advances since December with a new surgeon, and lots of new procedures and making lots of progress.
• Doctor mentioned the possibilty of having to go through this again... always a possibility.
• Doctor said that toddlers do so well recovering, even more than babies.
• Feels really busy in here.
• Up every 10-30 mins with a fight.
• Piper works best with midazolam not so much the Presidex (the dex word). The nurses said that Piper is old school that way ;)
• She is trying to crawl out of bed. Got to really work to keep her settled. Tiring.
• Snuggled me for a little bit. So nice.
• Lost her arterial line needs a cuff, which is annoying as it pumps up every 15 minutes. Almost guaranteed to upset her.
• Downed some juice, asking for milk and trying to sign it. So sweet.
• She is quite warm. Back in bed a little better, not so hot.
• Gave her some chloral to help her get some real sleep to tonight, didn't really end up changing much. They ended up just upping her morphine for night time... not convinced she'll really sleep.
• Still likes her soother. A lot.
• Draining a lot out of her chest tube. Very cool, new system. Drainage is good, but there is a lot of it.

Otherwise, a pretty good day. Just long and tiring. We are really glad for all the great people in that hospital, but we are weary for the process ahead. If we end up going upstairs to recover tomorrow, we will be a little more on our own, so we'll have to do more of the hard work.

We are hoping that soon more lines will come out, and Piper will be a little more free and a little more comfy. We'll see how tomorrow :)

Thanks again for all your prayers and support today. We've really appreciated it all. Wow. I still can't really believe we're doing this all over again.

Tomorrow we hope to take out some lines like her catheter, one IV line, chest tubes, pacer wires and maybe something else. Then maybe she'll go upstairs and start eating a little more and being a little more normal. One day at a time!

Now we just need to rest so that we can work hard tomorrow. I'm feeling really tired, but I kinda just want to get back there and see how she's doing :) She might get some milk tonight, which will make her happy and miserable at the same time. Can't win.

Goodnight all!