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!

New surgery date: May 18th.

Umm, yes, that is next week. Exactly. This time next week, Piper will be having her second open heart surgery. Oh man.

The reason for the switch is not a change in urgency, just a scheduling issue. The hospital knows that there will be a few babies born in the next few weeks that will have some pretty serious heart conditions that will need very intense care, so they are happy to do Piper's surgery before any of those "cases" are born.

Again, glad Piper is not one of those intense cases, but still. This date change is a bit of a shock on the system. And I am not thrilled about it. I have had to cancel one of the weddings I had booked for that weekend, which I know is never a good thing for the bride. Luckily, I have amazing clients who are so incredibly loving and supportive and understanding through it all. It breaks my heart having to miss this day with them, but I know that I will not be the best photographer I can for them, so I need to give them someone who can give them the most enjoyable wedding experience possible.

Also, luckily, I have amazing friends and support people. My good friend Vasia is helping me out with this one, and is taking charge and is going to make this slight bump in the road into a beautiful wedding for this amazing couple. Thank you Natalia and Andrew for being so great.

Now onto the reality that this is happening much sooner than we thought, and even at all! We are now entering the busiest weekend we have almost all year, and now with a pre-admission clinic to go to on Monday (also my birthday), to prep for surgery on Wednesday, the 18th of May.

I don't know if I am ready for any of this. But I do have cupcakes ordered from the oh-so-talented Buttercream Couture, so that is one more thing off of my plate. And they are going to look and taste great.

Oh boy, oh boy, oh boy. Here we go! It will be great to party this weekend with all of our favourite people, but this is not how I saw our May going at all.

Just trying to deal.

Baby #2 is "perfect".

I knew today was going to be a little hectic, and there was no way to really brace myself for it. I seem to function a little better when the house is in order and there is food in the fridge, but unfortunately today, we only had a full fridge. So, my day started off a little defeatist.

Anyways, by the time 2:30 rolled around, I was ready to go pick up Matt from work to head to BC Women's hospital for our ultrasound/echo. We've never been to the Women's side of the hospital, so that was new. But as soon as we were there, we saw Piper's cardiologist and our nurse and it immediately felt a little more like home.

The ultrasounds at Women's are great because they don't need your bladder to be inhumanely full, just for you to be hydrated the whole day. So I could pee when I needed to, even once I got there, and I just needed to keep drinking water. Lovely. No near-pants-peeing experiences.

The tech was great and got things going right away. At Women's, the tech has a screen that she can see, and then there is a screen at my feet that I can see the whole time, which is so nice. We see everything she sees all the time. And she tells us all sorts of stuff - all the time. It was such a change from some of the US we've had. She could tell us right away how things were looking and right away things looked positive. Then, within a few minutes, Piper's cardiologist was in there taking a look, too. He said "everything looks normal that I can tell", and reiterated that a few times. The tech agreed.

She continued to look at everything else, and we saw some delightful little toes, some legs and even a really good look at the face (though no profile). The spine, neck, kidneys, head all looked great.

Then, two other women doctors popped in and also took a look. They were cardiologist specialist for neonatal issues, helping with high risk pregnancies etc. They both took a look and agreed that this baby looked normal and "perfect", at that. Thank you for using that word! That is what every mother/parent wants to hear! I felt so good hearing that.

So, it looks like BCCH will not have a new patient this year! Just a repeat one...

Speaking of which, the surgery booking lady left a message for me wanting to see if she could change Piper's surgery date to the 18th of May. Ummmm... I am not sure if I am allowed to say "no" to these sorts of things. I was really hoping to get out of May and into June, when life isn't as crazy. Again, I don't think it's an urgency thing, just a booking preference thing, but I would really rather keep our old date, or at least try for the beginning of June. Ahk.

I will call her tomorrow morning and see what I can do. Nothing is for sure yet, except that this is happening, and the date could possibly be changed.

Otherwise, all the news today is good :)