Comparing the scar.

Just for fun, I mocked up a little comparison of Piper and her scar.

The left side is Piper in early December, when we thought her surgery might be soon. She was 7 months old. The right side is Piper about 2 weeks post-surgery. She is 11 months old.

I think it is almost a creepy sort of image, just because I recognize both of those babies, but the younger Piper seems so foreign to me now. Look at how chubby she was! Her face was so different, her eyes looked smaller and she just seems less, well, old. I guess that makes sense, no?

She is a much leaner baby now. No belly, skinny little legs and not as much flab in general. Oh Piper, my girl. Celebrate this time in your life when you can wallow in the fact that you are encouraged to be fat and rolly-polly. I am sending you waves and waves of forgiveness for all the years you are going to be bombarded with lies that it is not alright to be chubby. You are so beautiful, and always will be: with or without rolls.

Sigh.

Right now, I catch myself looking at her scar sometimes, and i am still amazed at all that happened in that little body only 1 month ago. Unreal. I try to touch is sometimes, but she often pushes my hand away. When I do get a feel, it is quite smooth, but there must be some scar tissue built up behind it because there is quite a ridge. When she wears a tight shirt, you can see the bump through it.

But I don't think she is bothered by it. Only a few times have I caught her yanking at her collar in annoyance, or fiddling with her zipper up around her neck. Maybe she still feels it is sensitive.

But looking more, I realize, that is it! That is all she is left with! One scar. For all of the waiting, the wondering, the hold-ups, the tests, the questions, the answers, the tears, fears and failures: all she is left with is a scar. How wonderful.

She won't remember any of this time, or at least (and hopefully) not enough to seriously damage her. She will have this scar, like a tattoo on her for the rest of her life (even is she chooses plastic surgery later), but it is a part of her, like an arm or an eye. This scar tells such a great part of her story. How brave and resilient and unique she is.

I pray that as a female, she won't ever feel self conscious about it; that she'll wear v-necks and tube tops (ok, maybe not tube tops) and bathing suits that showcase her scar, not hide it. What an experience. What a journey. What a life so far! And the only reminder of all of this is one scar. And her perfect heart.

Life as usual.

So here we are: post-op.

Now that we are here, it all feels like I made a really big deal out of all of this. I remember, as we were driving home from the hospital thinking "wow... was that it?". And it was.

People: this is totally do-able. Babies are so resilient. It is just us parents who need to learn how to be like that.

I am so glad that I took so many photos of the whole event. I have looked back a few times, and not even realizing it, hold my breath as I scan through them. Photos remember so much more than I do. But it's good, too. It brings back the sounds, smells and emotions of that time, and I am glad that I captured them.

Some things I would have done differently:

• we should have scheduled a walk every day, for at least 30 mins or so. I am sure we both gained about 5 pounds just sitting around and snacking. Gaak.
• I should have taken more notes during the day. I am really glad I blogged as often as I did, but I am still sure I forgot a bunch of stuff.
• brought more sitting work. I had a project to do with Piper's cloth diapers but I couldn't find my seam-ripper, so I didn't do it, but that would have been perfect. I ended up reading a lot, which was good, but it made me sleepy.

Hmmm... maybe that is all. Otherwise, our experience was so good, all things considered. But I am so glad it is all over now.

Anyways, we didn't get to go to BCCH this week because Piper had been exposed to the measels, so even though she doesn't have them, they don't want to risk her still carrying into the hospital. So we'll go at the end of the month.

We check in with the pediatrician on Monday. I'm not worried about anything really... just want to be told "yup, all is well!".

Ok. Baby just woke up, here are some more pictures:

I worry a little bit about how the chest tube holes sorta tug up a little bit... might just need the scar tissue to soften up? It feels tough and hard under there.
Here is Piper with my Dad. He just had an operation to remove cancer in his liver, and so far so good. He is hoping to have the same sort of recovery time as Piper: "well, if a baby can do it, so can I!".

What to say now?

I am finding now that Piper's surgery is all done, I don't have a lot more to say on here. I have always intended this blog to be temporary, so it might be close to running it's course. What I would really like to do, is have this blog printed and bound through a printing company (there are a few out there that do that, like blurb). That way, I'll have this journal of this entire journey to put on my bookshelf and pull out whenever I feel like it.

Really, things are going on as usual. Mostly. Piper is still a tiny bit regressed, but it catching up to her normal self all the time now. Some word she used to say she hasn't said again, and she is not yet as brave as she used to. We are not encouraging her to walk more on her own, as, when she lunges towards you, half falling, you grab her up by her armpits, and that is a no-no for us... so we'll wait for that.

I think things will just keep progressing at the pace she chooses. Really, what is that rush?

We went to see the family doctor (awesome woman!), and she clipped a tiny stitch that was sticking up out of the top of Piper's incision. She also picked that scab that was there, too. Euuuk! Glad she did that and not me. There was a tiny bit of pus under there, too, so that was good to clear out. Her scar is looking much cleaner now, in my eyes.

She still doesn't like you looking at it too much, and doesn't like it too much when you prod. But otherwise, she doesn't seem to be in any pain. She hasn't had Tylenol now in a few days, and she is sleeping a little bit better (or I am just getting used to being up 3-4 times in the night). All in all, things are pretty happy over here.

She is playing more independently and I think we might be getting close to chopping out one nap, which would leave us with just one nap a day. Not too sure. She ends up going to bed really late these days, and I think I could push her to take her nap, say, after lunch, and which would go into the afternoon, and thus omit the afternoon (4pm) one, but we'll see. Again, no rush. She's had a lot of change in the last while. I won't push it.

Oddly, and I really didn't expect it, I am feeling much more calm these days. I really didn't think I was all that stressed, but how I am feeling now is literally like a huge weight has been lifted off of me. I am much more calm about life issues and everything. I really didn't see it coming. Life is always changing, continuously, so that is good to be having constant changes to keep things interesting, but with it all, I am feeling surprisingly relaxed.

So, big breath.

Feeling good.

Loving the sunshine. Loving my baby. Loving this life.

Being home.

Just a little update about us being back home now...

All seems to be going pretty well. Piper is now back into her regular routine of 2 naps and is pretty much able to do most things she could before.

She is not quite as active (squirmy, scooting) as before, but I know that will come back pretty fast. It is almost like she has taken a small step back a few months. She has lost some of her words (sounds, I should say), but, again, I am sure they will come back.

She is eating really well now that she is home. Lots of her favorite foods are still pretty bullet-proof (yogurt, carrots, parsnips, zucchini, cereal, apples). And she is nursing really well, too. She had me worried for a little while there, but everything seems to be back to normal there. The poops and the pees are all good, too. (oxymoron, I think so...)

We've tried to keep things kinda low key for the last little while, a bit of going here and there, but not over doing it. We still need to be careful about sick people for a while, as she is a bit more susceptible to getting something, just being post-op and all. But blowing bubbles in the backyard was a good time! That yellow suit (we call it her Zoot-suit) is meant for an 18 month old kid, but I am going to make it last! It was passed down from her cousins, so I am sure a few of them have worn it too. Just roll up the sleeves and legs and you've got mess-proof fun!

Piper's newest thing these days is pointing at EVERYTHING. That is new for her. Now, as soon as she can, she just points at anything, though she is quite specific. In my head, she is saying "that, over there. What? Why? Can I feel it? Taste it? Now?", so I usually oblige her. I am always surprised what she can see, as obscure as it is. Good eye sight! (that would be a Daddy trait, not from my side...)

This is the perfect time to be reinforcing signs, too! We have been doing a bit of signing here and there for some simple motivators for her (milk, eat, more, cat -oh, those last three sound bad), but now she is really seeing and hearing things, so I feel like this is a prime opportunity to tell her what they all are. I feel like I've got a good number of signs under my belt, so we'll see how this goes. I think she signed "light" to me today, as she is always pointing at lamps, and light fixtures. Communicating with your child is so exciting, so I want to try to do that in any way I can. And I have always been really interested in signing anyways.

Here she is playing with a pack of flash cards that are kinda cool. You can see that little pointer finger, working like a crow-bar on prying up or open everything in sight.

And physically, I think she is doing well. It is hard to tell, yes, but I feel like she is moving in the right direction. She has really clear ups and downs, but they are getting to be ups and she is a tiny bit more tolerant of some things. You can tell when her Tylenol wears off... she'll be sitting and playing and then kinda stops and just cries like "why does that hurt? oh, it makes me sad and crying just makes it hurt more!". So we've been keeping the Tylenol up pretty regularly. She has been sleeping a little better, not up as often, but I am still pretty tired. I've going through a rough sleeping patch right now... which means, I am not sleeping all that well.

Here is Piper in an "up" moment, happily shuffling around and talking to her bear.

We go to BCCH on Thursday for a check-up, and I am sure everything will look a-ok. We have yet to hear about the blood work from today, but hopefully by tomorrow morning.

**note: did you know, that at BCBioMed, the day after the Easter long weekend is their busiest day of the year? Well, we found that out the hard way... like walking into the mall on Christmas Eve. Wowza. Luckily we had the same awesome lady who knew us and was so thrilled at how Piper was doing and knew her condition well, so that was a high point! Anyways, if you don't have to get bloodwork done on this day... don't.**

The Scar.

I just wanted to let you all see how Piper's scar is looking. This is one week + 2 days post surgery. All of the steri-strips are off and there is just a few tiny scabs yet to fall off. After that, it is just time to heal. We'll try some vitamin E stuff, maybe some aloe and there are some cool silicone strips that we could try too. Already, I am blown away at how clean it looks, and it is only going to get better looking.

Piper doesn't like you touching it though. I keep trying to feel her new heartbeat, but she quickly pushes my hand away with a glare. I did hear it in the hospital though, and it was a clear "lub-dub", no more swishing. Kinda cool, no? One day i will try to get a recording.

Piper is definitely skinnier. Her little arms are scarwny and she has lost her belly. Her pants are kinda sagging on her now... booo. I know she will get it back, but for now, it just feels like we've starved her or something. Oh well. She is mostly happy. She had a pretty normal day today, only 2 naps and has eaten pretty well, though nursing isn't getting any easier...

Oh, and I spotted tooth number 9. Dang! Why couldn't it have come through while she was on serious pain killers? This is a molar, so I am not impressed.

For now, enjoy this little lady in her post-bathtime nakedness.

(the two holes at the bottom of her incision are where the chest tubes were. You can hardly even tell where the pacer wires were - to the sides of the chest tube holes; they have already faded to tiny little dots)

And then into recovery mode!

Long posting alert: if you don't feel like reading it all, at least look at the pictures :)

Ok, due to not being able to get a steady wi-fi, I wasn't able to blog much. Sorry about that. I will do the best to catch you up now!

And honestly, I can't remember all the details anymore. I think that is mostly a good thing. The major achievements that matter most is I soon got to breast-feed Piper, which actually went rather well. I was so happy to not have to pump as much anymore... so glad that they had the pump available, but kinda tedious to do it for EVERY single feed. Gahk.

Piper was steadily becoming more and more awake. She was moving around more (mostly just her limbs, she still wasn't really going anywhere, except scootching down her bed), and in general, really aware.

There was almost always someone coming to see her for bloodwork, or with meds or to look her over or do rounds. It was good to always have something happening, but I could tell she was getting tired of it.

We were also getting pretty tired of being in the ICU. There is great staff there and they take good care of you, but the stress level there is just heightened and you can't quite relax in there. We did get out often enough, and had a few visits, too, but we mostly just sat by Piper's bed reading or being on the computer or our phones or snacking. Oh man. Am I ever snacked out.

All in all, they were really happy with how Piper was looking. They were wanting her to be peeing more, so they gave her some Lasix, which is supposed to help with that. She had been on that for a while, but still, her output wasn't much.

The diagnosis with her diaphragm is that the right side isn't working much at all, but that is totally normal from having surgery and having the nerves "stunned". They are certain it will recover on its own. Maybe 6 months? She might have some shortness of breath, but otherwise, it should be fine. Her sats have been good, so they know she is getting enough oxygen and her heart rate is good, too.

Anyways, eventually, sometime on Monday, we got the news we might be going upstairs. We had been told a few times that it was kinda 50/50 whether or not we would be going to 3M (recovery ward) that day or the next day. The doctors kept going back and forth. But upon arriving on Monday, we had a new nurse and things were looking hopeful. It was a matter of paper work and room availability. Sometime in the afternoon we got the news that were moving upstairs, out of the ICU and officially onto recovery!

We were so excited, and exhausted and all of the above. It still took a while, but we finally got going. Piper was still on oxygen (though they had turned off her hi-flow oxygen, as she did fine on just normal O2), so they had a little portable tank under the bed. Ta-da! they've thought of everything.

To finally have our own room, our own window, our own bathroom, the ability to close the door on the noise... all of it was well worth the wait. And of course, it also meant our baby was that much better! They had a nice cot for me (Matt decided to go home at night and try working during the day, which actually worked out well) and it was set up nicely. We even got all the channels! Cha-ching!

Once we were on 3M, things really slowed down, yet sped up at the same time. We didn't have that constant care all of the time, which was really great. Our nurse would check in on us every so often and check vitals and do her thing, but we were mostly on our own.

The next day, they even lowered Piper's oxygen down until, by the end of that day, she no longer needed it! Which meant, no more nasal prongs and one less tube! I was surprised how little Piper pulled at the stuff glued to her face, but you could tell she was glad to be rid of them. Oh, I think they got rid of her NG (nose tube) just before that, too. Oh, that things was gross, but kinda cool. They could actually manually "burp" Piper whenever they wanted to. They would just hook up a syringe to the end and draw out all the air in Piper's stomach! They would just keep sucking until they reached some milk, and then they would push they out of the syringe and just feed that milk back down. Kinda cool, kinda gross. I would have loved having one of those for a newborn baby with bad burps. Could have solved a lot of troubles. Anyways...

Things progressed along really well once we were on 3M. There was one night that we were pretty worried that Piper hadn't pooped in 5 days, and it really needed to happen, but 2 rounds of Laxtalose (??) and one suppository later, that baby could keep things moving along.

Her feeding wasn't great either. She would nurse, but only for a few minutes sometimes, which meant she wasn't peeing much, which meant they were thinking to put her NG tube back in to give her fluid and milk, or hook up an IV. Not fun options. Eventually, her feedings picked up enough that they didn't have to, which was good. They keep such careful control over what goes in and out of their babies there. I think they kinda resent breastfeeders for that, just because they can't quite know exactly how much is going in. They like pumping moms, but the mystery of how much baby is getting kinda wears on them: "so how many CC's do you think that last feed was?". Riiiight. They have a big white-board on the wall and you document all the "in's" and "out's". Everything that can be weighed or measured is.

Anyways, she did enough to get us in the clear. Oddly enough, now that we are home, she is eating like a pro. She just needed to be back in her space and she was good to go.

So on Wednesday, we were given the tip-off that the next day looked like a good chance of us getting home. We were thrilled, but really had to make Piper eat and drink as much as possible, just so that there was no hiccup with them sending us home. She had a good few feeds that night, and another poop or two. Hooray!

Piper was getting to be more and more like herself, though her play times were really quite short, and she just liked staying in her bed (who wouldn't, really? after a big deal like that?!). But there were little hints here and there of her becoming more and more like the baby we know and love :) It was much easier to hold her once her oxygen and NG tube were gone. They just had an IV in her foot, which didn't even really have anything going in, but just to keep that vein open in case they did need to put anything in. It eventually filled her foot and calf with fluid so much so that they were rock solid, so they nurse took it out and let it be:) We never did end up using that IV after being in ICU. Another hooray!

This little foot was the one that they used to get blood from. Every day, bloodwork people would come in our room (sometimes at 7:30am, flicking the lights on and waking us up... grrr) and take 2 vials out of Piper's wee foot. It was always a bit traumatic, but was over pretty fast. By the end of our stay, Piper's foot looked like she was walking on glass or something... they took a lot of little bits of blood.

Funny story about her blood: our hematologist came to see us after surgery to let us know all of her neutrophils looked good and were at a whopping 18, which he said was a little higher than they expected. They didn't want them too high, just for reasons of normalcy. So, they waited for them to drop back down, below 5 and they would give her another G-CSF shot.

One day they finally got to 2, so they gave her a shot. The next day (the day before our discharge!), they were at 72. Pardon? Yes. 72.

That is kinda unreal, no? The heme-team seems to think that they were that elevated due to her mounting a response and the added stress to her life at the moment, but that is a bit of overkill, Piper. Really now. So then they had to do another blood test to make sure her levels were coming down. Thankfully they were, but they really didn't have a concrete answer why they had gotten so high. Just plain strange. She is totally fine, just an unusual amount of neutrophils. Needless to say, she doesn't need any more shots. They will keep an eye on her auto-immune neutropenia, but for now, we no longer have to see the hematologist, but just get some blood work done on Tuesday and go from there.
So discharge day came (April 1st- exactly one week after Piper's surgery), and the cardiology team said she was green to go. That was at about 9am.

Soon our nurse came in to ask us if we had been seen by the infection disease team or something like that. I would have remembered them, so I said no. She went on to say that there had been a child (about Piper's age) who had caught the measles and was on another ward and they realized they had to quarantine the kid, but it was already too late. They had looked at the buildings blue-prints and they saw that the ducting was connected to our ward as well, which meant that the entire ward had been exposed to the virus. And Piper being under one year (when you normally get your measles vaccine), would be more prone to get it.

Long story short, there was a LOT of hoop-di-la going on at the hospital, trying to get a shot for all the kids who needed it and then administering it to all the kids and giving them all instructions on what to do, and getting doctors and parents consent... We finally ended up leaving the hospital at 7pm
We had a smooth drive home. You could tell that Piper felt great being back in her zone. She just stared around for a long time, taking it all in. She smiled at the cat, scooted a tiny bit and in general, got used to her house again. She also became the normal baby we were used to. She nursed like a pro and went to bed relatively easy. Its hard to let a post-op baby cry about anything longer than 2 seconds. She finally did sleep and both of us had the first undisturbed 4 hours of rest we'd had in a long time. It was glorious.
So far, being home has been really good for her. She is more like herself all the time, though she still has to take it slow. We can't pick her up by her armpits for another 6 weeks, just because its too much pull and pressure on her ribs and incision, so us getting used to that is the biggest challenge. She isn't as strong as before, and you can see her struggling a bit, but she is slowly gauging how much she can do and just going with it.
And she grew! Though she lost a little more than a pound, she grew more than an inch in the last month! I was holding her walking on the floor with my fingers and it felt like her head was much closer to my chin than it had once been, and so we measured her on the wall, and sure enough, she was a whole inch and a bit taller than she was on March 4th. Cool.

Other than that, we are settling into the fact that this part of our lives is over. Wow. We have been waiting for more than 10 months for this to be over and it finally is. Now we can get used to life with a repaired baby. She will have hospital visits for the rest of her life due to her heart, but the longest, hardest part is over. For all of us.

I am sure I've forgotten a lot of things already, but I wager, if I haven't thought of them yet, they are worth forgetting. All in all, we had a spectacular experience at the hospital, but are so glad we can now move on.

We've had an incredible amount of support through this all, and it actually just baffles me. I am running out of words.

Thank you.

Thank you everybody who has ever uttered a tiny little sigh for our Piper, who has shed any amount of tears for her little heart, and who has hugged us to let us know that they are praying for us. There have been so many people who have just crowded around us with their love, and truly and honestly, we couldn't have done this without that kind of support. I really do mean that.

This part of the journey is ended and we are onto an entirely new one. Again, I am reminded that you can't plan for anything. You just have to take what comes your way and make it work.

I remember my sister telling me, as soon as I was pregnant, "having a child changes your life". And I think that is just so undeniably true. I am forever changed. Lots of you are also changed. One little baby, one tiny heart can impact so many people. Again... just baffled. If she can affect this many lives by the age of 10.5 months, what does the rest of Piper's life hold?

Yup. Forever changed.