Henry and Owen are 4!!



It's hard to imagine where the days and years have gone as we write the subject line today... Nothing like having kids to demonstrate the passage of time before your very eyes.

In a word, things are great with our family and with Henry.  We continue to take him for cardiology visits every 6 months.  Each visit Henry has echocardiography (ultrasound), an ECG (to check his heart rhythm), and a clinical/bedside exam with Dr. Fruitman (who is usually accompanied by a student or two).  All continues to go well.  We know that at some point, around the age of 5, Henry will need a 'parts change' - the conduit in his heart does not grow as his blood vessels do, so the surgeons will go in & change this piece to a larger one. This will necessitate another open heart surgery. We push this fact to the deepest depths of our consciousness as it is too much to fathom the thought... We will have that worry when the time comes...Henry is growing and developing just like his brothers and we have seen no limitations in his physical activities (as Hal would say, "Henry finishes half the fights he starts"). Henry took skating lessons in the winter and we all enjoyed the backyard rink. He also 'plays' U4 soccer.

We don't know if anyone reads the blog anymore, but we always want to provide encouragement & information that may hopefully help a parent or friend or family in some way. When we were in the thick of things with Henry's surgeries, it sometimes felt so overwhelmingly scary that we wondered how much more we could take or if we could even get through the current stress and worry... but you can, you will, and you do. In those most stressful times, we try our best to deal with only the current facts and worries. It is easy to let your thoughts run away into all the possible complications and things that could happen. There are really hard times and then life goes back to normal... In the stress, you wonder if it will ever get easier or if you will be able to recover (along with your child's recovery). In our experience, it will get easier. The regular visits to the cardiologist get easier because their fear lessens (if you are currently holding them down for their Echo and ECG, just know this won't always be the case. We used to come out of a 90 minute appointment sweating and completely emotionally spent - just from managing Henry on the table so they could complete the assessments they needed to). Now, he may cover his eyes as they are passing the ultrasound probe across his chest, but he is mostly content and we are just sitting... there's no longer a big physical effort :)
We feel so blessed and lucky to live in a place with among the best cardiac specialists & surgeons in the world. That also provides a lot of comfort. 

Henry having his Echo



Echo

 



Henry & Daddy waiting for Dr. Fruitman



 

Trying on the blood pressure cuff. This used to be a disaster, but now Daddy can put it on and Henry is all smiles!



Henry adores Dr. Fruitman, his cardiologist



Henry & Daddy checking out the fish tank...part of the regular visit to Children's Hospital



Daddy, Henry and Owen out for a Sunday ride



Heading up the Sulphur Mountain Gondolla

Henry looks like this most of the time - all smiles!

Hanging by the river on a sunshiney summer day.



Henry and Owen's 1st day of Pre-School - September 2014




First bike race!!

Summer fun at Calloway Park...another family favourite

It's all about "The Batman" these days in our house

Mexico, May 2015  Boys and water... enough said!

Checking out a parrot with Daddy (Mexico)

Henry was the only one of the boys to give it a go at holding the parrot

Hangin' in the pool in Mexico



If it wasn't the pool, it was the beach!!



Happy 4th Birthday Henry & Owen (June 10/15)

New bikes and helmets!!

Henry getting some help from Daddy



Our lovely neighbors let the boys use their trampoline. One of their favourite activities!!

Ready for rodeo days at pre-school

Henry and Owen Turned Two today!

Time sure flies! Henry is doing great, hitting all the same milestones as Owen and keeps up in every way one can think - you'd never know what this little sparkplug has been through! We are so proud of Henry and thought we'd update you all that his continues to do well, no surgeries imminent...sigh of relief.

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