February....

On February 6th, we received news we didn't expect. Just four months to the date of surgery last October and we had our next scheduled cardiology appointment. Here's what we heard Dr.G say: "Teo's doing great. The surgeon did a great job. We wish all kids did as well as Teo. Come see me again when he's two."
TWO!
He's not even a year old and only four months post-surgery and COME SEE ME WHEN HE'S TWO. Elated. Joyous. Relieved.
We were just starting to settle into our own family pattern and kind of expected that this appointment would be one of several in the next years. We hadn't really even talked about our expectations about this appointment - which was weird anyway because of all the talking and preparations we had become accustomed to. So it was extra surprising to hear the appointments were to just stop. We'll take it! To be truthful, there was a moment of anxiety wondering if this was right or smart....shouldn't we be keeping a closer eye on Teo? But it lasted a moment and we trusted instead.
We feel most blessed.

Teo also began to crawl this month - mostly he's successful in only a backwards direction which is how he ended up mostly under the bed in this picture!

And on the 27th, another milestone ... Teo sat up on his own! It was a monday morning before work. Ryan looked over at Teo on the floor and asked if I'd put him there. I looked over while  saying, "where?".... And there Teo was, sitting and smiling at us enjoying our confusion at his latest success. It took a few times of finding him sitting before we actually saw how he did it - each time grinning at us.

Way to go Teo!

And here's what you've missed...

Time is flying past. Good time. But I have been asked to keep writing about Teo and his progress so, finally, I am. And here's what you missed: February, March, April and, now, May....

Normal?

Today happens to be three months following our last post about Teo. No news has indeed been good news much to our relief and delight but I have felt some pressure to write in case you are reading. Or wondering.

I have often considered writing. And equally often, found no words. I have many many thoughts. So I am trying to find words to fill the events (or, more accurately, the daily normalcy) of the past three months. Nothing since surgery has been so traumatic as that week was! But it is hard to write about the momentous non-events since that week.

I wanted to write on October 24th when Teo turned 6 months old. It seemed a big day and worthy of writing something, anything. But we were still recovering from surgery and I thought another day would be better for writing.

I wanted to write on November 17th - on the date of the six-week end to Teo's recovery. The day passed with a whisper, no events. Not even a single appointment. No one called to say we could pick him up normally now. Nothing really seemed to change on that day - the one we'd been waiting for. I would've titled that blog "Exhaling" or "Holding our Breath" or something like that. Because, that day, for us, we realized we'd been waiting for it, waiting to see, waiting to ensure all was well. And it was. And we exhaled. And soon, although not exactly that day, we picked up Teo under his arms like you would any infant. And he was well. And we all breathed a little easier. But I thought another day would be better for writing.

I wanted to write again on November 24th when he turned 7 months old. Wow. Two things in the same week - but I hesitated.

I started to write on December 8th for no significant reason but to catch up on Teo's progress and statistics. He still had (and has) his scar but it is healing. I wasn't sure at the time if I wanted to write that he has a noticeable bump on his chest where the bones knit together but calcified. I'm still not sure I want you to know or to notice. I could've written about how sick with colds and flus we all were for about two months and how we finally felt like we'd finished with it. But it felt like I was whining (and I probably would've been!) and it seemed so petty compared to heart surgery. At the same time, Teo showed us he could tough it out with bronchiolitis and we saw progress and strength. He finally gained back his weight that had been lost during surgery and post-op but was only now in the tenth percentile. He was in the 50th percentile prior to surgery. His pediatrician said not to anticipate a return to the 50th percentile. And I wasn't sure if his growth, though steady, was interesting enough to write about. So, I didn't.

I wanted to write on Christmas Eve. Teo turned eight months that day and it was Christmas afterall - his first. Over that past month, Teo began doing so much more baby stuff - the things he maybe would have otherwise been doing at 6 or 7 months. He started to sit up on his own - and topple over with a laugh. He started laughing out loud. He took even more interest in his fingers and toes as he watched them and grabbed them - the only activity he could do while recovering and laying on his back. But now, he began rolling again - this time rolling to the right and the left and over and over. We actually experienced the typical, "hey, where's the baby" moment when he rolled so far off his blanket that we didn't see him just two feet away. He'd not done that before. It was joyous. Such simple pleasure seemed like mommy-gushing - thinking her kid is the only one in the world to ever do these things so well. So our hearts swelled and I didn't write about it.

I wanted to write on New Year's Day for the experience of another year behind and the anticipation of another year ahead - right on the verge and in so much appreciation of both. I wanted to write about recovery and hopes, of past struggles and future fears and dreams. It all seemed too sentimental and way too normal. Besides, we were planning and packing - going on a family vacation to revel in sunshine with our family and with Teo who has recovered.

I finally sat down to write today and only then realized it had been three months since the last post. There is no grand significance to today and no milestone reached. We returned two days ago from a really normal, nice, boring, warm, lazy family vacation. And throughout the vacation, Teo smiled and cooed and cried and pooed and breathed daily. Normally.

Perhaps we are finding peace with Teo being healed - normal - and I can write again.

Twelve Days...

Twelve days post-op and we went to see Teo's cardiologist in Calgary for follow-up on tuesday. All is well. Had an echocardiogram and ecg as usual, then Dr. G removed the bandages on the last sutures where the drainage tubes were removed last thursday and we saw all that remains in scars and marks of Teo's surgery. He is healing well. Amazingly well. That baby skin just heals so quickly and completely. When I look back at the pictures from surgery, I know that I did not expect this. I don't know what I expected but probably not this.
Once the final surgery date was booked, and now in retrospect, it all went so quickly. And with the scars fading even as quickly, it feels slightly less monumentous. Or perhaps I am just feeling tired from the intense relief of this all being over. Because the effect of surgery, scars big or small, on Teo's life is neither fading nor forgotten. That is understatement...maybe we just need to adjust our focus on celebration instead of worry!

Now, the worries are more everyday-type: We still need to ensure that no infection gets in the wounds - looking for redness and discomfort - but so far so good. We will also go back for removal of the stitches and another set of echo and ecg next week. We need to get some sleep and get Teo to sleep before midnight!
We're not sure if we will be visiting the doctor weekly or what the schedule will be - I aim to remember to ask! Perhaps its not surprising but I line up questions and then forget to ask - nothing critical - I'm sure they'll tell us of appointments. The critical ones, those questions I remember. The big one for me tuesday was to check on the results of surgery.
Me: "Do we need to keep watching Teo to see if he turns blue?"
Dr. G: "No."
Best answer ever. Will I be able to stop checking? Actually, I think so.
We feel a lot of relief right now - as though we've been holding our breath for a long time.
Funny, too, with all of this very serious heart business, Teo is still 100% typical baby in so many other ways. And the normalness of that is not lost on us either. Perhaps it even makes it more enjoyable in a strange and possibly sleep-deprived way! The first night of ten hour sleep overnight has not been repeated unfortunately and we feel like normal, tired parents of a normal baby. It feels a little more like he is a newborn but I imagine that will also fade as he gains strength in recovery.
So, we're enjoying seeing Teo recover, we're recovering from constant worry, and looking for ways to simply enjoy our family - to celebrate his healing heart and life in general.

Cold Turkey

Nothing to do with Thanksgiving and leftovers - I just didn't mean to quit this "cold turkey". I actually began about three posts yesterday but didn't complete a single one. It is wonderful to be home but it is busier than I remember - ah, the luxury of lounging around a hospital room. Yes, I am complaining a little! Apparently, the world and demands do not stop. But it does feel a little like we were abducted by aliens and dropped off again one week later - Teo bears the external scars - only to find everything else as it was before plus laundry.
It feels like there is much less drama to write about now. We arrived home safely on thursday, had supper waiting, ate with Grandparents, then began the going-to-bed routine. From that evening until now, Ady is still showing signs of adjusting - a little more whine, a little more demanding, many more tears and stalls. Unfortunately, not being super-parents, capes and all, we are a little less patient, a little more barky and less tolerant of stalls. We've also got colds - Ady and Ryan with sore throats and cough, mine just a few sneezes. Thankfully, nothing for Teo and we aim to keep it that way with extra hand sanitizer already in the house.
Teo is also demanding a little more attention where he used to be a little more complacent. We carry him everywhere. And he is more insistent on being held than before. The patterns we thought we had established has dissolved in the week of ringing machines, intercom calls, doses of medicine and blinking lights. So we muddle through, remembering how happy we were to be heading home. Who said being a responsible adult, no, parent, was fun anyway?
Despite my whining (was that on the list above?), we have had a few more successes at home...Teo slept through our first night at home for a total of 10 hours! (That's hour 8 in the picture above) Obviously, he needed the sleep as his red-rimmed eyes showed in our last few days at the hospital. They are much less red today. Ady and I bathed Teo today and scrubbed at the residual bandage marks and took stock of his bruises and pokes as well as his scar. Our little pincushion is not quite healed of his experience but is, thankfully, on his way. He has rolled from his back to his side without complaint - but not yet rolling over as he used to. And, lastly, he continues to feed well.
So, now we have maintenance: We have a follow up appointment this coming Tuesday with Teo's cardiologist here in Calgary which we are looking forward to. And we continue to remind and admonish eachother that Teo must be picked up like a newborn - head and tail - rather than under the arms for 6 weeks until his bones knit and the layers heal completely. We are to keep a keen eye on possible signs of infection and continue to dose diuretic and pain medication for Teo as required.
So, we will update you on his progress on tuesday if not again before then.
As always, be well.

Sent on the TELUS Mobility network with BlackBerry

The parting details...

We received news that Teo was headed toward discharge at about 7:30 this morning. It worked out perfectly - he enjoyed a good feeding then received his morning medicines including a shot of morphine. I had stayed at the hospital overnight so was there and ready for the morning's events. Ryan arrived soon after with a shot for me - of espresso and other caffeine for him. Within 40 minutes, a resident nurse came in to remove the chest tubes that remained. It required another nurse to hold him still, a pull and suture on both sides. Teo wasn't ecstatic at first but he felt the upside shortly after.
We were then whisked away for an echocardiogram - not with sedation this time - a quick one checking for fluid around the heart and for expected function. When the doctors came for rounds this morning, they told us we'd be out by noon! All looked good with the echo, all remaining wires were removed and we signed the papers.
It took awhile to get the prescriptions filled and everything packed away. We're now just packing and cleaning at RMH before we hit the road. What a whirlwind!
Here are pictures of Teo waving and saying thanks to all the doctors, nurses and staff. Mom Karin ready to whisk Teo away in his cuddly blanket. And Dad Ryan doing the better thing and seatbelting him in.
See you at home soon!
Sent on the TELUS Mobility network with BlackBerry

Coming Home!

We're out! And on our way...