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.