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!

The "Plan".

I put plan in quotations because I know these things can change rather quickly, so don't think I'm one of those "planners" who needs it all to go according to plan, but I do feel I need to have one in place to function. Savvy?

So, the plan for tomorrow is as follows:

• wake up around 5:30 am, get everything in the car, eat a little bit and at the very last moment, put Piper in the car. She won't be able to eat or drink anything, so I'm hoping she stays sleepy or at least entertained by the car ride. (we are using Matt's work car, the Yaris, this week due to it's fuel efficiency and how well it fits into Vancouver parking stalls. Cha-ching!)
• Leave around 6am, get to the hospital around 7ish and sign her into the day-care clinic. Here she might get her blood pressure taken, temp and some other vitals. Good luck guys! This baby is gonna be hungry and pissed at you regardless. That is my prediction.
• At some point near the end, after she's in her little robe, with maybe a bit of stuff on her hand to numb it for the IV, she'll be given midazolam to calm her down and remove her fear and anxiety. It also kinda makes her look and sound pretty drunk. But this is a nice way for her to calm down and not remember the next little while. I'll have to remember to say a proper goodbye before she gets it, as last time I kinda missed out on that.
• Around 8am she will be getting handed off to a nurse or possibly the anaesthesiologist (A) to start some more serious sedation. The A we saw on Monday was awesome (pretty much a 40+ surfer dude, with a very groovy vibe) and said we might be able to go a little further with her, maybe able to be with her as her IV gets put in. We'll see. They usually want to keep parents out of the serious stuff and keep them in the waiting areas.
• Then, we'll leave our numbers on the white board and we'll head to breakfast at a pannakoek house. We'll try to relax, try to chat. Try to imagine we are just having a random breakfast in Vancouver with nothing else to do.
• Maybe then we'll go to MEC, as we've got a bit of a list of things to look at there, and now have some birthday money :)
• We'll try to head back for about 11am, as they said surgery should take approximately 4 hours, so we'd like to be there early. We might wait in the ICU waiting room, have a snack, read, or watch something (gotta remember to bring headphones!)
• Then we'll get to talk to the surgeon (can I tell you again how wonderful he is!) and get the run down on what happened in the OR.
• After this, we should be able to go and see her in the ICU. Apparently, she will come out of the OR extubated, which is a huge step! This is all due to a new drug they use that speeds recovery and helps enormously with post-op pain etc. I will get the name for you all, but at the moment all I can remember is "dexa-___-___-___-ene" or something like that. Anyways, she will not be on a ventilator, but will probably still have oxygen up her nose. She'll have only 1 chest tube, and still have the pacer wires that are there just in case she needs a "jump" (bad joke), which they've told us is quite unlikely. She'll have a central line in her neck, and an IV and blood-withdrawing line in her hand. No feeding tube down the nose/throat this time, as they are saying that with this new drug, she could most likely be eating the next morning. Say whaaaaat? Yeah, big things have happened in 14 months.
• Then we'll see what needs to happen, and how Piper is doing. We'll bring snacks and books and see what we want to do. We might step out for some lunch, or visit some of the people we know in the hospital. Tomorrow is a flexible day.
• After the most of the day (we like to meet the night nurse, so after 7:30pm), we'll see how Piper is doing, and whether or not we come home for a sleep or stay with my sister and bro-in-law at UBC. If Piper is looking like she might be quite alert, we might want to stay close, but if she seems like she might need to sleep things off, we might head home. I am leaning towards coming home as I know the next few days will be a little tiring, so it's always nice to be in your own bed. Not sure yet. We're packing our sleepover clothes, but we're leaving that up in the air.

That is all I can think of for now. The day might go very differently, and I almost assume it will, but it will resemble this "plan" somewhat. I am excited to see the changes that have gone on in the recovery/surgery process and how this second time around might almost be like a first time around. I am excited for a bit of down time with Matt, even though it's always a little tense, we'll try to keep things light and just spoil ourselves a little. I am a little nervous of what the surgeon sees when they finally have a good look at Piper. You just never know. I am hoping for no surprises.

Tonight I went through some serious waves of emotions, starting from "I just don't want to do any of this!" to "why don't we just go to bed right now" to "let's get organized and make this happen". I know this is the best thing for Piper at the moment, I just always feel like dragging my feet a little. Argh, but I don't at the same time (see: waves). I was worried today that she might have been sick, from a fluke throw-up from a cousin yesterday night, but she seems more than fine. This really does seem to be a go. I remember doing this last time, and looking back, I feel like I was waaaay more organized. Maybe this is almost a comparison to having a second child: sure you know what is coming and how the whole thing goes, but you're always a little surprised once it actually happens and you have to do it all over again.

What I mean to prepare myself for is, this might not be as easy as I have made it out to be in my head. I am prepared to work a little harder this time.

Anyways, our bags our packed, including two food/snack bags (thanks friends! these bags would have been pretty boring, or completely pre-packaged without you!), a toy bag and a clothes bag for Piper and a clothes bag for us (+ some reading material). I think we can do this. I know we can do this. We're doing it now, so there is no going back.

This time next week, I will most likely have a sleeping 2 year old in the other room, who is just about back to her normal self, having been home for a few days. I look forward to those days. This will come and go so fast.

Thank you all for all your love, support and kind words. A friend reminded me today that it's ok to fall apart sometimes, and that is what good friends are for: to pick you back up and bake you cookies. I haven't fallen apart yet, but it's nice to know I can at any given time and that I have a host of people who are willing to help out.

Once again, I am blown away by the love that surrounds us and surrounds Piper. Thank you for bearing a bit of this burden as we journey through this. We're so glad we're not doing this alone.

Quick Update!

Point form!

• saw everyone we needed to today.
• everyone seemed happy with how Piper was, minus a small cough, but there isn't much they can do about that, especially wait, as she could be sick again in another month or so anyways.
• everything went relatively smooth, with help from my sister and the iPad.
• neutrophils are at 0.7, which is low, but they are deciding not to administer pre-emtive G-cSF this time. They might post-op, but only if there is a real need. She seems to produce neutrophils when she needs them, and otherwise, not at all.
• it is very likely that she could be home by the weekend. They have lots of new developments since her last surgery that are reducing hospital times and are improving recovery.
• surgery is still a go for Wednesday, just need to keep her healthy in the mean time. Had a minor scare with a cousin being sick around her, so we are going to play it safe tomorrow and just stay home together and think healthy thoughts :)
• went out for my birthday dinner with good friends and I gorged myself of Greek food. Good end to a busy day.
• Matt got off with a warning from a police officer for doing a U-Turn (ps. those are ALWAYS illegal. Always). The cop told him he owes me a $121 date now. I am going to hold him to it ;)

What a day, indeed!

Thanks for all your support and help this week. We are slowly making it, one bit at a time. Now we just really need prayer for health and safety for tonight and tomorrow and tomorrow night.

Over and out! Good night friends!

Happy Birthday, Piper baby!

Yesterday we all had our birthday party/ies. We all celebrate our birthdays within a week of each other, so we've decided to toss them all together into one big party.

This year for Piper, I decided to have a little more special party, just for her, in the morning with some of her friends. Yes, that meant we had tow parties in one day, but I figured it was going to be a crazy day, might as well get it all done at one shot! She had some of her bestest buddies over, all in their cutest outfits, and they played, coloured and ate little shapes of fruit and cheese. And then the cupcakes came out! Oooo-la-la! Big hit. I don't even want to try to know how many of those cupcakes got eaten by those little girls, but they certainly did some damage. Good damage, that tasted amazing on the way down ;)

I was so happy Piper could play with her friends all together in one day. They are all so sweet together. Even though, there could never be enough toys for them all to share, it was a really sweet time, and some of us moms even got a chance to visit a little bit.

There was a steady flow of friends and family throughout the day, and we really felt loved and really special :) The weather was so-so, with on and off rain, but we survived just fine.

Piper really enjoyed herself. She ate everything she could reach off the table (which meant a lot of cupcakes got sneaked!) and then some. We didn't monitor anything and just let her munch on whatever. It was her party after all. We tried to do the same, but ended up chatting with lots of the people who were over. Really, that was the best part. I was so happy to catch up and talk with some dear friends. I did manage to eat a decent number of cupcakes (thank goodness some of them were minis!) and even sat down from time to time. It did take me about an hour and half to finally eat my dinner, as I kept getting up to talk to people, but again, all worth while.

Now we are done with all the party festivities, we are slowly coming out of the muck of wrapping paper, dirty plates and toys and realizing that this upcoming week is going to be pretty intense. I am actually really glad we still had this party, as it was a perfect distraction and something to really focus on. And it was such a happy occasion. At some point during our party, Matt's dad lead a bunch of friends and family in prayer for Piper and for us in these next coming days. We continue to feel blessed and at peace with everything that is going on, and are really trusting that God's got the best plan in mind here, regardless of how crazy this all seems sometimes. And it really does feel crazy sometimes.

True, I do feel a little better this time around, knowing what to expect a little more, but I am still bracing myself for some hard times. This could be completely different than 14 months ago. Piper is so much older, for one. I am a little terrified of trying to keep her busy during recovery, as she tried to pull out her IV or oxygen or anything like that. Or wonder why it hurts when she wants to get up or why her throat is sore. I'm not looking forward to that time.

Otherwise, in these next few days, we don't have to do too much. Just a little more hospital prep, and mostly just cleaning our house up. And no, this isn't just party related, but in general. I am almost getting that nesting feeling of just wanting my house neat and tidy and CLEAN for when we are all home and recovering. I don't want to think about chores when we're home and I don't want to worry about how clean the floors are or when our bedsheets were last washed. It's those sorts of things I want to accomplish in the next little bit. We'll see how much I can manage. I still do want to wrap a few projects up for work, too, so that I don't have to think of them while we're getting Piper better. That might require me working Tuesday, which I don't feel great about, but it might need to happen so I can be a little more free during our hospital time and during recovery.

One never feels great asking for things, which is really too bad sometimes, but I totally feel that way. I do feel like most of the time I can handle all of this on my own just fine, and I probably could. But I know I have a great bunch of people who just want to help out, and so why would I try to carry this all on my own and possibly cause more damage than good? I might as well be specific and get help with exactly what our situation dictates.

This week, things that would be much appreciated would be:

• prayer: for Piper, for us, for the hospital staff (surgeon, anaesthetist, cardiologist, nurses etc).
• some yummy food: home-cooked comfort food is what feels best. Either things for when we get home or things we can heat up in the microwave at the hospital. The food selection at BCCH isn't stellar (Tim Hortons, Starbucks, Safeway), and all packaged food ends up tasting the same. Even just snacks would be so helpful for those ICU days.
• possibly some house help, either pre or post surgery. I know that is a lot to ask, but I know some people really want to do something, and this would make my heart feel a lot more at rest, just knowing the house will be welcoming and clean when we're all back together as a family.
• possibly help with childcare on Tuesday (May 17). That's either coming over to play with Piper while I work in the office, or keeping her at your place for a morning/afternoon. Any help would be great. I would only ask that you are feeling healthy and haven't had a fever/flu in the last few days (or been in close contact with somebody like that).

Again, it's kinda odd asking for help, but I can honestly say that any one of those things would be extremely helpful. Really.

Thank you all for coming out to our party this weekend! or for sending your love from afar. We so appreciated seeing all of you and had such a great time. What a way to celebrate!