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.

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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!
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Coming Home!

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

Addendum to the last Post

I forgot to mention that we are now without a room-mate as well. It only lasted for about two hours and she was gone again. A little one slightly smaller than Teo and was headed to the ICE room for more attentive care. We hope all is well with them.
As for us (and, yes, I do feel a little selfish in saying this), we have the room to ourselves again for awhile. Very nice. This will be very nice while it lasts...

So Soon Farewell?

Okay, I just put it out there. I said it out loud too. Because if it's going to happen, we have to talk and plan. And if it's going to happen, well, it's going to happen. Farewell, that is.
This post may appear to come quickly on the heels of the last but that had more to do with blackberry and less to do with us. The "day of monitoring" I wrote about is almost over as evening approaches. Teo has done well all day - a little fussy but, perhaps, over-tired more than anything else. We have been advised to watch for signs of irritability or signals that Teo is not quite himself as it can be a sign of infection. So, with those kinds of admonitions, we are certainly not meaning to rush things. However, as before, we are in-between: in-between wanting to leave and wanting to stay in order to ensure the best for Teo. And as the signs begin to point more accurately toward the door, we begin to get excited for the next phase!
Tomorrow morning, we are expecting the usual rounds. We anticipate that Teo will have his tubes removed. He will also need another echocardiogram. If all is well (hope and pray with us that ALL IS WELL), they will remove the rest of the monitoring. And we will be released! Different only by a few scars, gray hairs, much gratitude and new hearts. See? I can't help but go there. We are abounding with joy, with such great FEELING at potential release! I cannot put this into more words (or I will bore you trying) - such potential relief.
Ah, but that is tomorrow. And if today's dream of freedom comes true, I have tomorrow's dream lined up and ready!
For now, we settle on a soon farewell...

From Top to Toe

And in-between:
We remain at the hospital for another day and night. Dr. Q, our surgeon, is cautious about Teo's fluid around his heart and wants to observe another day. Teo has continued to breastfeed and has not been ordered back to the low-fat formula - so we need to monitor that for another day as well. The 'discharge coordinator' continues to visit daily, starting yesterday, giving the impression we are leaving soon but we know better than to anticipate at this point. Despite that, we are optimistic about departing this week!
On other wires and tubes, Teo's IV head gear has been removed this morning as well as his pacing wires. The pacing wires were in the muscle of his heart and just get pulled - ouch. Teo's been very accomodating with all of this - both insertion and removal of things. He also had the dressing on his incision removed today. Apparently it is well-known among the nurses here that Teo's surgeon does that himself and its usually later than other surgeons. So, we have waited patiently and now we have finally seen the "damage" and, for a scar, it looks pretty good!
Teo still looks like he needs more sleep with his red and watery eyes but is otherwise continuing to progress nicely by our account. We have been fortunate to date in having a room to ourselves but have just gained a room-mate. From the sounds of it, Teo won't be sleeping much today either! But days are pretty noisy around here in general with a lot more staff, rounds and tube-removals among other things. It was nice while it lasted...

And now...

Again, things have switched up as quickly as I post something! The doctors' rounds came late today - around 11:30 am. When they stood outside discussing Teo's case, Ryan and I strained to hear what was being said. We caught a few bits of good info. Then they came into the room to talk with us.
Music to our ears, the dialogue started with, "Teo is doing wonderfully." And he is.
"The switch" is back to breast. Off the low-fat formula. It seems that since the amount of fluid secretion is diminished, the concern has also diminished. We still keep the tubes and sacs for another day of observation but they could come out/off tomorrow if all is well. If, however, the fluid is too milky again, it's back to the low-fat formula and bottle feeding and probably another day in hospital. We are just riding it out and await the next tests and results. We remain very optimistic. Teo remains very smiley and playful. Maybe its time for a nap...

Might as well make a grocery list...

Bananas
Berries
Almond milk
Peas
Carrots
Baby cream...

The doctor wishes to be cautious and keep the tubes on Teo for another day so there will be no fewer today. So, we're settling in for a quiet day of sleeping, feeding, pooping and peeing. There is less watching of the monitor and it also beeps less often, rarely calling our attention. All the numbers are from Teo on his own which still awes us given that he could only produce those numbers with the aid of oxygen previously. His heart is fixed. We still need to adjust our thinking.
We are waiting on removing the tubes that monitor the "kile" that I wrote about yesterday (and its actually "chyle", I asked. And its a milky coloured, interstitial, lymph and emulsified fat fluid we all have in our lymph system. (Thanks again google). Either spelling, I'm glad we didn't name him "kyle" right now (which means 'strait of water' - who knew?!) But his nurse last night was Kylie, ironically). The good part is that he is leaking less blood and, actually, less fluid in general.
Overnight, Teo continued to readily drink his lowfat prescription and contently succumbed to the blood pressure monitoring and doses of medicine as well. He woke up cheerful and we found some toys for him to play with. He really seems to enjoy lifting his feet and his left arm - waving them about. He smiles at all the nurses who find him most charming. But we're having a hard time catching that smile for you to see - I tried, as you see in one picture. Also in another picture, you can see his rudolph toe - that's monitoring his oxygen levels; and the bulb of fluid draining - that's the chyle. Funny, it fails to affect my appetite...

Prunes or raisins
Instant coffee
Apples...

Patience, my dear.

Teo continues to gain colour and gets more and more lively. He's been smiling a lot today and has been telling a few stories. Its been a busy day for us with Ryan and I living separately and away from home - everything takes longer to do before we can be reunited again. Makes me impatient! Perhaps I started that way - impatient? And Ryan is now feeling a little like a caged animal having spent night and the better part of today in Teo's room. So, we remain apart for awhile but with switched residences - I am with Teo at hospital and Ryan is soon headed back to RMH.
We also had visitors today - one a pleasant surprise and one a pleasant plan. Everything went as planned - We planned to say farewell to Ady today, sending her home with my brother and family to spend a more normal week in her own home (with Grandparents and the cat) and bed, going to school and programs as expected. It had been a good visit with Ady but also time for her to go. Probably harder on us than her as she seems to take this all as a grand adventure. She does ask regularly, however, three things: when will you be back home? When will Teo have all the tubes out? When can we go on vacation again? (She asks a lot of other questions too but these are the ones that pierce through me since I wish I knew the answers and crave those things too!)
We had high hopes at the beginning of the day with talk of Teo being discharged as early as Wednesday - I was set to write about it and tell how well it was all going. The delay in mywriting has brought another set of circumstances to write about and we may be delayed here awhile yet. It all depends. It always does.
The tubes that remain in Teo are draining fluid from around his heart. They analyze the fluid regularly and have found there is too much "kile". That's not the full word but, from what I understand, it is a sign that his lymph system may have been damaged during surgery. It is common enough but a setback for Teo. When the "kile" remains in the lymph system, it helps to break down fats. If his is pooling rather than in the system as it should be, he cannot properly break down fat and the pooling of fluid itself is also problematic. The remedy has many possible steps - the final try being another surgery. But there are several attempts before that last resort: we started Teo on a low-fat formula - no more breastmilk - by bottle. Now, we had not had much luck prior to surgery with bottle-feeding though he has been better post-op. So, we expected Teo would need the feeding tube replaced (as things were going so well, it was removed around noon today). He also needs to be on this diet for 4-6 weeks. Good news is that Teo was a rockstar with our first attempt with both bottle and formula! I remain skeptical if this will continue. But hopeful. Always hopeful. There is also a possibility that I can alter his breastmilk with a changed diet of my own. We will see a nutritionist about that tomorrow. Goodness knows I could use a low-fat diet for 4-6 weeks (about as long as any resolution about diet lasts, right?!)
So we're not sure how long this delays our departure nor how well Teo will do with this setback. We remain optimistic and need to settle back into taking things one-at-a-time. Patience, my dear, patience.

P.S. (Can you post script on a blog??) Happy Thanksgiving to all our readers! We hope it was a great day for you and one of thanks and, perhaps, of turkey and stuffing and a bountiful harvest. We are very thankful too even if today's lesson was about patience. This list is short compared to what we carry in our hearts:
Thank God for all our blessings
Thank you for all your support
Thanks family for filling in
Thanks that this is all we must bear as we have now seen much more
Thanks for Teo and Ady, eachother
Thanks for doctors and nurses and their care
Thanks that turkeys can be frozen and then cooked up later when the family can be all together
Thanks for perserverance and for patience too

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New Headgear

Since Teo was born the week of the Royal Wedding, the staff here decided Teo needed a new fascinator to commemorate the occasion.

Or just a new IV line with cover.

Ignoring the tubes and wires...

So, we are now in the ward. Ryan is back at RMH with Ady soon to be enjoying some Thanksgiving turkey prepared by volunteers for the house. They'll pack up some for me and bring it back to the hospital. On the ward, Ryan and I will be taking shifts since we want lots of care and the nurses have more patients and much less attentive care. Of course, that means Teo is still doing well. It also means one of us will be in the cot beside Teo for the night. While Teo is still taking the bottle, Ryan gets first shift and "boys night" - probably watching football. And the girls get to have a sleepover - probably watching Tangled. Above is a picture of our hospital accomodations.
Just a note on the last post: Ady is smiling with Eskimos coach Kavis Reed (that's CFL (football) for the uninitiated). He was unimpressed that we were Calgary fans but he still smiled a lot and even helped Ady paint a pumpkin (she painted over his EE ears though).
I also noticed later that we're sending pictures with lots of tubes still hanging off Teo which may still be shocking to you. Funny how it becomes normal very quickly. Even holding him gets easier, even with everything going on, as you just get used to ignoring anything that isn't Teo. So, I've included a sleeping Teo that shows only the tube to his stomach via his nose - and note the oxygen tubing is gone! Its hard to know what's gone and what remains, I'm sure, from where you sit to view these.
If you're interested, keep reading - here's the list of what remains:
Teo has two tubes still draining fluid from around the heart - those are attached to the gross bulbs filled with red. He has a feeding tube for medicine and milk in his nose and down to his tummy. He should have an IV for fluids somewhere but has kicked them out of each foot. They may have to resort to putting one in his head again - that won't make for good pictures! He has pacemaker wires still in but not attached to a pacemaker. He has wires on his body but only on the surface - monitoring; he has a toe ring monitoring his oxygen intake. Last, he has bandages covering his incision and other poke holes from before. But truly - this is progress! That and the fact that we barely see them anymore!
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Converts?

Some recent visitors to the Stollery and new colours for Teo!
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Sunny Sunday

Teo remains in the ICE room but has been upgraded in condition again. That means he only has a nurse check on him every 15 minutes or so - more intermediate care (or would that be less?!).
Ryan headed to the hospital earlier trying to catch the doctors on rounds to get the scoop on Teo - his progress and his next moves. Ady babysat mom - watching TV on the iPad while mom slept. After breakfast at RMH, we walked the thirty-minute jaunt (would be quicker with longer legs than Ady has - but she did the whole distance on her own) to join Ryan and Teo at the hospital.
Teo is now off the oxygen and managing to keep appropriate levels on room air. He fed through the night and even greeted his morning nurse with a great big poop! First one post-op and another great movement in the right direction! He's peed and pooped again since (and Ryan got to clean that one) and fed some more - all systems go!
We've got a south-facing window and are basking a little while watching both Teo sleep and Treehouse TV. Had some soup and grilled cheese, a latte and a coffee between us and some idle conversation - feels like a typical lazy sunday before Thanksgiving - location slightly altered. We have been told that Teo may move to the ward today if there is a bed. Given our learning experience at his birth with hospital possibilities, we know to wait until its true before we pack up. So, we bask and watch and wait alongside Teo.

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ICE, ICE Baby!

Teo was moved to ICE today. (Intermittent Care Environment). This is another step in the right direction since it is between PICU and the ward. He's still tubed up and wired up but we'll take moving up too - ICE is one floor up from PICU.
Busy day as we moved from our suite to the Ronald McDonald House as room became available. Its a little further away but also way less costly! We haven't yet explored all the amenities but have our Ady with us now to help in discovery.
Teo continues to feed from a bottle but also continues to need pain killers. Neither of us will be staying with Teo yet as the cots are only available in the ward. So we continue to catch up on sleep while we can. With a sigh of relief at another day, it's good to have the family together, such as it is.
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That Which We Cannot Fathom

We had another good night's rest last night. Not quite as solid as the previous night but good. And we've been in to see Teo again.
He had a few small problems with the line that was directly in an artery taking his blood pressure - no problems with pressure itself - just with the line. So they have removed it and he now wears a cuff for BP. And he wasn't peeing, so they re-introduced the catheter to ensure fluids are moving. Last, they increased the level of morphine as he seems uncomfortable at times. Small things.
Otherwise, he continues to recover: He fed from a bottle again overnight and this morning. His eyes were open briefly but brightly this morning - at least the brightest in a few days. We expect his chest tube to also be removed today. Apparently it is one of the more uncomfortable drainage tubes as other older children have testified about this type of surgery. The other two drainage tubes will remain for awhile yet.
We also had the pleasure of seeing and speaking with Teo's surgeon who has assured us that Teo is doing very well and we can expect him to be moving to the ward today. "That which we cannot fathom" is that which I cannot even seeing it here day after day. It has not ceased to amaze me what these doctors and nurses have done and can do. It amazes me how quickly our little one has healed - to see him with all the tubes, he looks so vulnerable. Yet, he is well.
"That which we cannot fathom" is watching our surgeon calmly asking us if he may move on. And us seeing him move deftly but without anxiety, along with several other doctors and nurses, to another infant who is in trouble. It's not having any clue as to what goes on behind the curtain next to us. It is having to rely on others, on our child's own unknown path, on someOne else ... We've been asked to leave now and we sit by the fish tank again, this time hoping and praying for another. I am humbled by the role of these caregivers in all of our lives and by our need of them. I am humbled by what I never knew.
"That which we cannot fathom" is the purpose of all of this. Of who recovers well and who doesn't. We are so very thankful for our blessings right now.
"That which we cannot fathom" makes us thankful.

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Baby Steps!

Okay, so we're not taking any real first steps with our baby! However, he is taking huge strides in recovery today - and only one day (ONE DAY!) after major surgery. We are so excited for him while still concerned and waiting and wondering and worrying.

As you can see in the picture, he is feeding already - straight to bottle. He woke up around 4pm licking his lips and crying a bit. Unfortunately, he couldn't feed right away because the doctors and nurses want to ensure he doesn't need to be intubated again for any reason. If they did need to intubate (that's putting the breathing tube back in his nose), they need to do it on an empty stomach. So, he was not permitted to eat. Instead, his comfort level was increased with other things pumping into him and he slept for awhile longer. But at 6pm, he was not to be denied!

He drained the bottle like a pro. Then napped for about half an hour and woke up crying again. We, alongside the nurses, tried rolling him to his side, burping him, a machine was used to scan his bladder to make sure it wasn't too full and uncomfortable, and so on... turns out, it was much more simple: he was still hungry and promptly drained another bottle. Nice work Teo!

We have just finished dinner for ourselves now and catching up on the blog and headed back to say goodnight to our Teo. We aim for another sound sleep tonight especially since there are rumours that Teo may be moved to the ward tomorrow. Very exciting progress! But there are other responsibilities in the ward. In the ward, we will have a parent cot so one of us may stay with Teo overnight. In the ward, we will be the all-night caregivers - with nurses on the floor, of course, but not as one-on-one care like he receives in ICU. And in the ward, there are regular check-ups regardless of time. So, if we intend to be "sleeping" in the room with Teo, we need to store up some sleep before that day (and night) happens.

It has been a good day. Pray, hope it continues into night. Good night.

What's the word I'm looking for?

Yah. Yeah. Yea. Yay. Yahoo.
I never know the proper spelling of that but I imagine the sentiment is understood...
Teo was just extubated before 2pm. Yah! That means they took the oxygen tube out of his right nostril. Now, that's all we saw but the tube went clear down to his lungs and was helping him breathe as well as inflating his lungs to the right pressure post-op. The doctor said this was early for extubation and a sign of his positive progression. Yea!
They also unplugged him from the pacemaker - keeping it close by but unplugged - since he's not ever used it. Yay!
They put him on oxygen in a different form - the same as he was on before - but this way, he is still using his own effort to breathe. And he's doing a great job breathing - now grunting. Now moving a little. Yahoo!
Next they're taking out his pee catheter - back to diaper changes. Who knew that could be such a Yeah!
We've been told what to expect to be removed next but its hard to remember...we are revelling in going in the right direction! We pray he just keeps going.
Yah. Yeah. Yea. Yay. Yahoooooooooo.

One Line Out ... A Few More to Go

We had a very restful night - all 3 of us! No calls from the nurses overnight and exhaustion-induced sleep for us all (along with a few drugs for Teo, helping him sleep).
The L.A. line was already removed from Teo when we got in to see him around 9am. That stands for "left atrium" and was measuring pressure on that side of his heart. That means the pressure is remaining constant - as it should - and is a positive step!
They are looking at removing the ventilator as early as this afternoon if all continues to go well. The ventilator is attached to his nose and is held in place with tape - all of which makes it look worse than it really may be. The other line in his other nostril is a stomach tube and would probably be removed at the same time. We were told that he might be ready to be moved to the ward (off of PICU) as early as tomorrow - again if all continues to go well! He will still have wires and tubes on the ward but he will also be able to begin feeding then.
Now it all seems to be happening so quickly! I keep asking to make sure that we're not rushing through this. The confidence of everyone has given us relief. I asked how this kind of repair is different than a car repair where you may expect things to break down again ... The response was simple: the heart is a muscle. As with all of our muscles, they have ability to repair themselves. What amazing vehicles we have in our own bodies!
So, we continue to sit bedside and talk to Teo. We tell him about the phone conversations we have with his sister and the stories Ady tells us daily. We cheer him on. We urge his inner warrior to stay strong. We tell him about all of you too. We kiss the top of his head. And we hold hands.

Intensive Care

At the end of our day...

We reflect back on another long day; one where we've enjoyed the BIG moment of successful surgery - and without drama. Now, as we leave our Teo in the hands of the team at P(pediatric)ICU, it feels like the next wave of worry is sneaking up on us.... Teo is definitely not out of the woods yet. Please continue with your prayers and thoughts and good will for him as he needs to overcome rising temperatures, blood pressures and other possible complications.

For ourselves, Ryan and I are hoping to capture some sleep before the morning. We've been told this is the time to do get some rest and we're aiming to try. Hard to stop thinking long enough to actually sleep but perhaps there was method in the madness making us sleep-deprived the past few days ... perhaps enough to just drop. I feel like this is the least coherent I've been on the blog - my apologies for that - except that it must mean I will sleep! Here's hoping for restful and healing sleep for all of us.

Good night.

All is well

Even though the pictures are shocking, all is well with Teo. Amazingly as things continue to progress, he should be tube free within a week or two. In order to be able to go home, he must be.
It is not as bad in person either. He saw us and we held hands and he squeezed. He's not in pain and all those attachments are making sure he's not in pain and that things are working.
We are amazed by and truly thankful for all the team who made our Teo better and continue to help him heal.
We are thankful for all of you who have supported us in this ordeal. So thankful.
We're not done yet but we're taking a moment to enjoy one HUGE step toward the rest of our lives together. Thank you for reading and being with us.

A Picture...

..Three thousand words.

Just caught a glimpse.

Teo was still but looks plump and pink as they wheeled by. Such relief.
Here's the fish tank.

We're on the other side!

Just saw our surgeon - minutes after I hit enter on the last post.

Teo's heart is fixed and they are just sewing him up. They will wheel him past on the way to PICU and then we can see him about 20 minutes later. He'll be in bed #3.
Doctor says it went well. There is mild leakage in the valves but that was to be expected. The hole is completely closed. And now we are onto the next phase of RECOVERY!
There is free food here to celebrate Thanksgiving today. We are giving thanks! And we celebrate our little warrior! (even if we have no appetite for the food right now)

No words can describe our feelings right now. Just so much of so much...

Waiting...

Now back at the hospital. We walked back to our hotel for a while, showered, and went for a longer walk. Its humid and fresh outside with yellow-leaf paths - a perfect autumn day for northern climes.
We expect Teo is in the middle of things right now and we will wait "by the fishtank" until we hear something.

Here are more details for the in-between:
I asked. Not sure why I wanted to know but I do. They told me Teo's blood is O+. I'm A+, for the record, and Ryan doesn't know. I've consulted my sister on what that all means and the verdict is that Ryan is not AB blood type but could be any of the others....ah, its all distraction.

He will need a transfusion (did I already mention this?) and they did have a match. The bandages you saw on his feet in the previous post look more severe than they were. They covered "magic cream" that makes the hands or feet numb to the upcoming needles. And that's where they will inject the anesthetics. He will have IV for fluids, a blood pump and monitors (they must stop his heart to operate), a lung machine, more needles for pain medication... Oh, they told us more but I can't remember everything. They told us he is in good hands. Handing him over was the hardest thing I've done but they were shiny happy people - very calm and reassuring and capable types. He was wearing a little gown too in the picture - smallest they have but still a little too big for him.

The fish tank is located right outside the doors to PICU (pediatric ICU) and we're keeping our heads down to avoid watching the doors. The surgeon will be the first person we see and he's going to come down the hall and not through the doors anyway - so no sense watching the doors. We are getting checked on by Courtney, our social worker, who reminds us to eat and drink and answers questions. She's shiny and happy people too. Thank goodness for them!

There is general noise and movement around us as at any hospital ... We remain still. Calm. Less tears for now. Waiting.

Godspeed Little One...

Teo is just now behind the doors of the O.R.
He was happy and smiley and enjoyed the bundled-up walk over to the hospital this morning.
Be well, our beloved little gift. Be well.

Last post for today...

We're exhausted. When I wrote we'd learn "more", I had an inkling but the reality was draining.

Just got back from the hospital at 6pm. Teo was a little too woozy from the sedative for the echo and we stayed to see how well he bounced back. We were all ready to be admitted but his oxygen levels started to come back up and stabilize as we neared five-and-a-half hours past the sedative dose.

So, surgery is scheduled for 7:20 am tomorrow.

Among all the others we met today, we met Teo's surgeon and he was quite wonderful. This is serious surgery. Of that we have no doubt (if we ever did). But now we are more certain than ever. It will probably be 3-4 hours of actual surgery but he may be away from us for up to 7 hours and we're not supposed to worry.

Please send you prayers, thoughts and good will our way - For Teo to be strong. For surgery to be uncomplicated. For the team of doctors and nurses. For us to not fear.

Good night.

Poking, Scanning and Tests. Oh my!

We're still at the hospital - currently noon. Started today at 4:30am with feeding Teo and changing him TWICE! No more sleep for me. Not that there was much more for any of us!
We are staying just two minutes away from the hospital (didn't get into Ronald McDonald House with changes to dates but that may change yet) and had a fresh morning air quick walk over at around 6:40am. Filled out forms and met our nurse and started everything... Teo fed at 7:00 and hasn't been allowed to feed again for the sedative he is just about to receive. After sedation, they will do an echocardiogram and ecg - since little guys his age (as the doctor just put it) don't tend to sit still. This will be the very careful look at his heart for the surgeon to review prior to surgery tomorrow. Before that, Teo was weighed and measured and is holding his own at 15lbs 4.6oz and 67cm (which also explains the heavy carseat!).
Teo did not fare well when they tried to take his blood. After poking both arms and moving the needle around way too much, they got just enough to match and will have to get the rest in OR. That was hard. His eyes are still red from the experience.
He will have a transfusion during surgery - required (as I understand it) because his blood will go through a machine and he doesn't have enough for both he and the machine.
What else?...
We've talked to at least six different groups so far and had a tour of PICU. Heart-wrenching to see the kids and babes all hooked up. Lots of deep breaths required.
We still need to meet the surgeon and go over procedures and what to expect. He's been very busy and it is generally very busy here right now. Because of that, there is a possibility we won't get surgery tomorrow. While its disheartening to hear that, its also a relief to know they won't put our child in a situation requiring a bed when there is no bed. Also a relief to know no one else's child is put in jeopardy either. We find out tomorrow.
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Atrioventricular Septal Defect - A Crash Course

Remember biology class? Not much? I remember there was one section on studying the heart but it's content escapes me now. Now, we've had a recent crash course - and a renewed appreciation for what we do not know! There is a vast expanse between what we begin to grasp and the science that prevails! So, from our experiences with Teo and much help from the encyclopedia of Google, here is a summary of what ails Teo's heart:

AVSD congenital heart disease occurs during the first eight weeks of a baby's development in the womb.  It is a fairly common defect, accounting for about 5% of all congenital heart defects and the most common heart defect to occur in children with Down syndrome, accounting for about half of the total. From personal experience, doctors have also told us that this is a typical heart defect and that Teo remains stable – as in, they've seen this before and nothing of his heart condition has changed since it was first detected at the 18-week ultrasound. And although we remain anxious about such a serious surgery, we are astounded at the science known about the heart and the successful surgeries performed routinely and take some comfort.

A heart "septum" is a wall between the heart's left and right sides. It separates the two atria (upper chambers) or the two ventricles (lower chambers). The septum between the two heart atria is a thin membrane, while the one between the two heart ventricles is thick and muscular. AVSD is a result of the membranous and muscular atrioventricular septum developing abnormally.  In its complete form, there are holes in both the septum between the top chambers (atria) and the septum between the bottom chambers (ventricles), and one common valve between the two atria and the two ventricles instead of separate mitral and tricuspid valves.

Depending on the type of AVSD, the already oxygenated blood may be re-circulated to the lungs, which is inefficient. The left ventricle also tends to have to work harder, which increases pressure to the lungs. This can cause the lungs to overfill with blood, potentially causing it to leak into the air around the lungs. This pulmonary edema can lead to congestive heart failure. As we understood for Teo, one critical point at which we needed to watch for heart failure was between 4-6 weeks of his life. We consider ourselves extremely fortunate then, and have been since, that we have not needed to rely on medications or oxygen due to congestive heart failure. Teo has never been required to be on medications to date. Blessed.

An AVSD will never close on its own and will always require corrective surgery for treatment. For infants with a complete atrioventricular septal defect, this usually occurs at 3-6 months. Surgical repair involves closure of the holes in the atrial and ventricular septa with a patch or patches, and reconstruction of the common atrioventricular valve. Of course, there are several possible complications that can occur and, right now, we are not focused on those and so, I do not share them here – the deciding factor currently is choosing life over death for little Teo and we proceed toward surgery with great hopes for his life. He is just over 5 months old.

Today, we expect to learn more. More about Teo's heart, more about surgery, more about everything, I suppose. Our day starts at 7am and, I expect, will be full of tests for Teo, orientation, information and more.

We've arrived!

Well, it took a little longer than expected but traffic slowed us in the city which led to a timing issue for feeding. Ah, but we are here now stretching our limbs and moving in.

Packing up

Getting ready to go and packing all the essentials. We are ready for anything.