This says it all for me today.....

WE ARE HOME!!!!!!!!

It is really hard to believe that we are back in our home with Henry already. What a feeling to walk back through the door Victorious and Proud with our sweet little boy.

On the other side of the door stood an equally happy and relieved Shelly - our trusted friend and wonderful Nanny to the boys. Even Kent, Shelly's hubby cascaded into this with us. He spent the day with the boys and Shelly at the zoo yesterday. Thank you Team Nordin.

Henry had his pacing wires pulled this morning. That entails pulling thin electrical cable with leads directly on the heart. They have been there since surgery ---- just in case. They were used with a pacemaker ( outside the body for temporary pacemaking )  and engaged a few times in his early recovery. It hurt to have them pulled, but he did well, and it is a relief to have them out.

After that, we needed to wait 6 hours, with a surgeon on 'standby' just in case.... always 'just in case'.

Henry also had another echo today. Everything looks generally good. Here he is with mommy getting that echo.

So good that after the next 5 days, Henry will no longer need any medications. He is 'fixed'. Next surgery will not be until he is approximately 5 years old ( to replace some prosthetic parts ( a conduit ) he has ).

( would you be able to tell that this little guy had major open heart surgery 5 days ago? )

We are elated to be back. Exhaustion can wait. What a nice feeling to be home - all 5 of us.

Thank you Village. Thank you so much.... We will enjoy a glass of wine tonight and toast you all - with a special toast to Henry.

Henry is my Guru

Henry, in his short life, has taught Mommy and Daddy so much already. His spirit is light, he giggles, he laughs, he enjoys.... even after all he has been through, even now, barely 5 days since his 3rd big surgery.

We have often said, 'Oh to be happy and carefree like a child', without ever really giving this any further thought, or putting a plan in place to achieve this as a goal.

We worry about the future, we fret about the past, dwell on the unimportant.

Henry, and in fact all children, simply do not do this. They do not worry about what has happened before, what is coming next - they simply live today. It is their nature and sole goal - to just be happy.

It is a gift Henry has given us - to remember to be present today, to not fret about the past, to not worry so much about tomorrow as tomorrow will come and it will be.

Since mommy and daddy can both be determined ( read stubborn ) Henry has needed to teach us this lesson 3 times - not once, or twice - three dramatic, tearful, trying, terrifying, tormenting, dreadful times.

Henry our beautiful happy Boy - we get it now. Please stop teaching us, and we promise we will learn from you.

Henry will have the physical scars for the rest of his life. We will carry the scars of this to the end of ours. Henry will remind us at each bath, each trip to the beach, each time we see his surgery wounds - that today matters, to limit the worry's of tomorrow, and to not dwell and fret about yesterday.

Hug your kids - they are wonderful. Can't wait to get home and snuggle with Magnus and Owen and Henry all together again.

We will go home Today!

What a relief it is to know that we will likely be home with all of our boys in Calgary tonight. Yesterday was a nice day -- no roller coaster of emotions or high stress, but a nice day taking care of Henry and spending time with him.  Aside from a vitals check every 4 hours, Henry was off monitors and out & about the hospital for most of the day.  He looks wonderful and people passing us by can only tell he is a patient of some sort by his hospital issue yellow striped PJ's, the bandaid on his neck (from his jugular line that is no longer in place) and by the arm board that holds his IV safely in place.  Most would be shocked to see his torso and realize what he has been through this last week (and in his life for that matter).  You'd never know it by how he looks physically or in spirit.

Henry is back to his happy, giggly, talkative self.  His walking was a little on the wobbly side early in the day, but even this was back to normal within a short time period.  Henry has only 2 'accessories' left - a peripheral IV in his foot (which he needs as long as his pacing wires remain...in case he runs into trouble then the access to deliver medications immediately is there), and his pacing wires.  These are easy to pull, but removal can rarely be followed by complications like bleeding. Henry will remain in the hospital for 6 hours after the wires are pulled, just in case. So, these should be pulled around 8:30 this morning, the 6-hour clock should start immediately after, and we should be on our way home at around 2:30! Henry, like his mommy and daddy, likes to be organized and ahead of things. In that, he took the liberty of personally pitching in a 'helping' hand by pulling out his last peripheral IV on his right hand last night. His night nurse had a very good chuckle at how proud Henry was sitting there with all the collateral equipment in this hands - lifting it up to show her he had removed it. Smart boy, he got a midnight cuddle, tickle and a few giggles with Jess - she is very very nice and very pretty. Instincts are in place for old Henry :). 

We are also doing quite well.  It will take time to recover from the stress & emotions of the past weeks, of course, and to catch up on our sleep.  We can hardly wait to get back to Magnus and Owen too.  It will also take time to thank everyone properly for their endless support - whether it be via emails, texts, phone calls, facebook or blog messages, by taking care of Magnus and Owen, by bringing us food or a comforting visit in Edmonton, or by bringing food to our family back home.  Thank you all very much.  One thing we have truly learned in our journey with Henry is in the goodness of mankind.  We are truly truly blessed to have such good people in our lives.

Bath time with Mommy

Ready to drive right on out of there!

At A Childrens Hospital it is sometimes quieter to sleep in the Park...

Homecoming Delayed....

Henry is not ready to leave just yet. He is doing well, but not ready to go home. He needs to be back down to his pre-admission weight and is currently holding onto to too much fluid.... disappointing, but better to be ready to go than go to soon.... more later.

Rounding Second and Heading Home - Maybe even Tomorrow!

 How amazing is that? Our little warrior is unbelievable. The progress he has made in the last 48 hours is astonishing. It has not been an easy victory, but he is looking so good to be victorious for his third time! He may even get to go home tomorrow, if all goes well. We are beyond excited. We are proud of him and miss Magnus and Owen - they have been in amazing care with Shelly, then Stacey and Gord (and Evan ) since last Tuesday. Above Henry is enjoying some toast and butter with Mommy.

Henry out for a stroll in the 4C care. He LOVED cruising the corridors of the hospital and not being tethered to an IV stand - Freedom re-defined !

Having fun with Thomas the Train and Mommy

Tired but Proud

Tired but Proud ( with Movember mess under nose  - http://ca.movember.com/mospace/1241452 )

Magnus and Evan at Mcdonalds - He sure sounds like he is having fun while 'on vacation' from Mommy and Daddy.

Gord and Stacey spoiling the boys and taking them to the firehouse on 101st - Gord's a firefighter so that makes him extra cool.

So happy to be roaming beyond his room - you can feel his joy!

But the victory was hard earned. Viewer discretion is advised with this video. Henry getting his JP drain and IJ LIne pulled by the surgeon. One of many times that Henry cried with desperation.... None of this has been easy. This gives you some idea of the emotions and torment of this ordeal - 3 ordeals...

It's not been easy for any of us - BUT - we have Henry, and Owen, and Magnus, and each other, and our friends and family. Our Village. Thank you all. 

Things are improving

 Henry delighted to be out of the PICU moving to 4C ICE

Time for a short update this evening. We are exhausted from the stress and emotions of the past few days, but mostly we are so relieved that Henry seems to have turned the corner. Yesterday, he was tired of everyone prodding him, testing him, monitoring him and it got to the point that anytime anyone other than Mommy or Daddy approached, Henry arched his back, held his breath, and would need to be forced to breath -- the result -- a terrifying bluish grey facial colour, exhaustion for Henry and terror for us.  These moments were among the most stressful we have had with Henry.  We were helpless - he needed all the prodding, testing and monitoring, so we needed to watch him get through this.



Waiting to move to 4C ICE

Henry had a restful night, though, and now seems to have the reserve to have people around (and still breath).  He has been happy and playful, though he is still sleeping periodically throughout the day.  He was quite swollen for much of the day (from the surgery and being on bypass - this is common). He is now on a diuretic to help him pee this off.  His eyes were swollen like a boxer, but he looks better this evening.  We moved to a step down unit quite early in the day (care is now 1 nurse to every 2 patients or so, rather than 1:1).  Henry decided he didn't need his NG tube (which goes through his nose down into his stomach), so he pulled that out early in the day.... the only surprise to us is how he has the multitude of other lines and drains and hasn't pulled any of them.  He does look at the oxygen saturation probe on his foot with the bright orange light and sing with delight, "Light!!!".  Glimmers of his regular self are starting to come back.

We will post a few pictures later or tomorrow, but just wanted to make sure you all know how much your support helps and much we feel it.  Henry really is on the mend now.

Enjoying some morning milk

At his hew 'home' in 4C ICE

His Teddy Bear from Shelly patiently waits for his friend Henry to Return

Henry is Trending Positively

Henry started his day in a positive direction. He was still very groggy and was confused, but generally better. Here he is having a little juice.

The juice went in - came out - went in - came out...... With all the narcotics, sedatives, thinners and generally issues post surgery, it's not hard to understand that it takes a while to even everything back out.

He had an echo today to investigate some pacing issues. There was a concern that he might have some issues from surgery - a leaky valve was one possible reason he might have had pacing issues. The echo showed NO Issues of the sort. What a relief. No answer to why there was a pacing issue, but likely just post surgical swelling. We'll see over the next few days.

He is doing really well - inch by inch, brick by brick, row by row - he is trending in the right direction - never directly, but always generally in the right direction.

Thanks for your rallying cry. Henry heard it - Henry feels it. We feel it! We are deeply grateful to all you guys.

Short update for today - we are pretty tired....but we are also doing just fine. thanks

Henry enjoying a little sponge on a stick soaked in cold water .... yummy

Henry has had a Rough afternoon

Henry did well in surgery, but has had a battle since. He is doing much better now but that plateau has been a hard plateau to reach.

Once Henry arrive back to the PICU, he was settled in by his team. He looked good all things considered. We say that as parents, that are really glad he came back. It's so hard to wait and worry, and worry and wait.

Once back, the goal is to keep Henry stable. If he seems stable, he slowly has support mechanisms taken off. One big goal is to extubate him as soon as is reasonable possible. This is a huge judgement call and comes with it's inherent risks - the sooner the better in terms of keeping him from becoming too dependent on it, the sooner the worse if he still needs it. To re-intubate is not ideal, to keep him on too long is not ideal either. It's a gamble.

Henry was extubated early. He struggled for several hours after. His breathing shallow and irregular. He stopped breathing entirely a few times, and turned blue and then grey. At points there were as many as 12 around his bed to 'help' him recover. It was beyond stressful for two parents that are already emotionally exhausted. The good news is that he did recover, he is breathing and is getting ahead of the battle by breathing more and more regularly and deeper. Good boy Henry.

It is emotionally very hard to see him in so much discomfort. He cries silently, face wrenched. He is has opened his eyes a little, but not for long. Just long enough to show he is tired, he is sore, his feelings are hurt, he is sad, and he is confused. There is no way around this, just through, and we would happily take all this away if we could. We can't, we can just help him with it.

We thank you all for your support. Please keep it coming. Though Henry has done so well, he still needs his Village.

Henry is out of surgery

He just came past. He is doing well, but they weren't able to extubate him because he still has some bleeding. We should be able to see him in half an hour or so.

Dr Ross just came out

And told us that everything went very well. We are sooooooooo relieved. Thank you all for your positive thoughts and support. Henry will be in surgery for another hour or so, but is doing well enough that they are going to try to get him off the ventillator (breathing machine) before he comes out. He has never come back to PICU off the ventillator before. We are so proud of him.

More when we can. Just want to update everyone out there cheering so hard for Henry.

Henry is in Surgery..... now we wait

and think positive thoughts and pray.... whatever it takes to will this all to go well.

Daddy and Henry in the elevator leaving Ronald MacDonald House this morning.  Henry was in great spirits, despite the 5:15 wake up.  Daddy smiling in spite the heartbreak of knowing what Henry faces today.

They wrapped Henry's hands like a boxer when we arrived at the hospital. They put anaesthetic gel on the backs of his hands for the needles/IV's to come and then wrap them so he doesn't have a numb mouth too. He'll be back in the Octogan fighting with his brothers in no time ( Mike's Joke ).He wasn't super keen on the hospital issue pj's. He looked like a French Prisoner in Papillon.

Lots of snuggles this morning before heading into surgery. Daddy needed them as much as Henry. Be the rock, be the rock, be the rock....

When they were ready for Henry, they loaded mommy and Henry on a stretcher and we gave him the midazolam.  Within minutes, he was relaxed and calm (basically drunk).  He was singing and babbling away - not a care.  A big relief to see his stress dissipate.... for Henry, but not so much for Mommy. Turns out Henry is a 'happy drunk' just like his parents :)

Here we are....arrived just outside the OR.  We had to hold Henry closely as his head was floppy from the meds. We stayed in this holding area until Dr. Ross and two anaesthetists came to answer our last minute questions. They are all so gentle and nice with Henry. We know he is in good hands.  They let mommy gown/cap and take Henry into the OR. Mommy was with him until he was asleep. He was happy and unstressed when mommy left him in the capable and caring hands of all the OR staff and our friend Cindy from pre-op.

Henry is in God's, the surgeons, and the medical teams hands now..... deep breath.

Please be Henry's Village.

Henry with his HUGE and Beautiful Bear that Shelly, his Amazing Nanny and our Friend gave him for the drive up. This is no easier for Shelly - we are lucky to have her love our boys as much as she does. Shelly is a very special person.

It is 5:52 and Henry is down and asleep for the night after a very long and brave day.

We want to post an update, but in truth, it is hard to even know where to start.  We want to tell our friends and families how we are doing and we want to tell other families (going through this) the truth about how it feels and the experience... the latter feels very hard to share right now.

First, the update..    It always feels like a bit of victory to get here to Edmonton with everyone healthy.  Any cold or runny nose for Henry means the surgery gets post-poned. This time, because Henry has teeth, he needs a letter from the dentist clearing him for the surgery - basically no infections or cavities... Check ( Thanks Scott Townsend :) )...  Not to mention all the logistics of arranging care for Magnus and Owen so they could stay in Calgary.  We owe a huge debt of gratitude to our wonderful nanny Shelly ( and her great hubby Kent, and beautiful daughters Brittney and Alysha ) and to our good friends Gord and Stacy, who will also be helping back in Calgary (all the help and support we are getting deserves an entire post in itself)  so so many others are providing loads of back up support beyond our expectation.....

So, we made it here and today was all the pre-operative workups, beginning at 7am.... 7 hours worth.

Waiting in Pre-op for sedated Echo

We knew what to expect from the previous times... sort of, except that Henry is much more aware now. Even at 17 months, he is clear something is going on. We didn't expect him to be so afraid.  There were a lot of tears (some his, some ours), but he got through everything well:  nursing checks, blood pressures on all extremities, 02 sats, review with Dr. Ross and his fellow, a visit from social work, from physio, a chest x-ray, bloodwork, ecg, and sedated echo.... and he maintained a fairly good disposition after 16 hours of nothing by mouth (this was the case because of his requirement for sedation for the echo).  He woke up from sedation with a bang - yucking it up, babbling away and wanting to walk all over the place, despite the fact that he was completely intoxicated....  That was quite entertaining.

The business of the day left Henry basically 'punch drunk' for the remainder of the day and ready for early bed..... after 2 baths with the special sterilizing soap (the third will happen tomorrow morning before we leave).  Henry was ready for today to end - not a tear when we put him down. Henry will be first case of the day tomorrow, so we need to be at the hospital for 6am.  He will be given a medicine called Midazolam that will help relax him and also make him amnesic for the period leading up to the surgery.  That is a comfort to us both.  Dr. Ross talked about his surgical plan with us today.  He expects the surgery to take approximately 4 - 5 hours, but most of this is getting in to Henry's chest safely (since they have to carefully navigate scar tissue and adhesions that can be there from the previous 2 surgeries).  The actual resection of the muscle bundle, he told us, will take him approximately 3 minutes..  If all goes well, we should have Henry back out of the OR midday.

It was a hard hard day for us all.... Henry finally gets some food after 16 hours

Now, the hard part...but one that we hope will help others maybe be able to prepare .....


How can we be the rock, when we just want to crawl under one?

This time around, even though we remain positive and optimistic and know in our hearts Henry is going to do great, has been emotionally shattering.  We didn't expect it to be the hardest of his three surgeries ( for us ). Henry looks great and is doing everything his brothers do with no outward sign of any trouble. So, we took a deep breath and know this is the road we are on.... We can do this - we know what to expect and we have already made it through this twice before. What we didn't realize is all the recovering we are still doing from Henry's last surgeries.

http://www.youtube.com/watch?v=3xK7YtUg9As&feature=youtu.be

Driving out of Calgary with him and arriving in Edmonton brought back a flood of emotions and memories. Both of us were flooded with thoughts we hadn't had in almost a year... remember the chest x-ray?  remember when they tried to extubate him and he had trouble breathing and the tricks they had to use? remember when Dr. Ross came out and said Henry had been bleeding out of every stitch hole and they didn't know why, but they had gotten it under control..... We mention these things, because we live day to day with our happy lovely family.  We aren't scared.  We don't live in fear.... but we are  dropped to our knees in an instant.

 A little dinner at 'the House'

and now for some play time!

What does it say that we still know the security codes off by heart at Ronald Mcdonald house. Or that our frequent coffee buyer card is still at the coffee shop? Geez, we just left.... We weren't coming back for 5 years or more....but here we are. Scared, Sad, Tired, Beaten Down, but - BUT still positive about Henry's outcome. We have to be - we can't crawl under that rock.

Helping Daddy at 'The House'

Today, when Henry was sedated, the monitors would alarm "no pulse", or his heart rate would drop quick significantly, and the cardiologist "just needed to get a few more images", then talked in hushed tones about getting better pictures and potential narrowings... They just don't notice you are listening and have a basic understanding. It is a concern, but likely won't change tomorrows surgery. We wait with baited breath for tomorrow. We have had a few too many curve balls to avoid the notion that another is coming our way....

Henry is now sleeping, exhausted from the day. Mommy and Daddy are finalizing everything needed for tomorrows early start. With nearly a foot of new snow, we hope that all needed will arrive as we hope for tomorrows big surgery. The weather reflects the cloud that hangs over us... When the sun comes out, the snow will be beautiful and when Henry rises from this surgery, he too will Spread his beautiful sunshine. We hope that day is soon.

Tomorrow is a very big day. Please collectively send your positive vibe to Henry ( and to us ). We could sure use your help. Will you please be Henry's village?

Tomorrow is a Very big day.....