Henry pays it forward

Henry did well overnight last night. They had a few issues with his oxygen and blood pressure, but all are part of the typical post-surgical course and part of the balancing act of controlling his pain while keeping him conscious enough to work toward extubation (getting him off the breathing machine).

Sadly, though, for Hal and one of the intensivists in training, Movember has come to an end. I think they would like a permanent record of their impressive 'staches', so here they are (such handsome guys!):

One of the main goals of today was to get Henry off the ventilator and breathing on his own.  They lowered his pain medications to get him to wake up, but he had a few issues with oxygen levels and a partially collapsed left lung, so they watched and waited for a few hours. In the early afternoon, they went for it.  This was rough as Henry struggled initially.  Alarms were flashing and ringing, Henry was crying and thrashing around and a team of about 10 surrounded him in case he couldn't manage breathing on his own and the tube had to be re-inserted.  Henry struggled initially to the point that both Hal and I had to leave for a short while.  The big issue was that Henry was so drowsy that he didn't breath deeply or cough (to clear some of the secretions that are in his lungs both from the surgery and from lying flat in bed for a prolonged time). The team got us involved to talk to and stimulate Henry.  The anaesthetist had to pull several options from his "bag of tricks", but over the course of about an hour it became clear that the extubation would be a success.  He is off the ventilator!!!!  The 1st picture below is a portion of the team working on this process. Below that is Hal with Henry immediately after extubation. Henry still had some oxygen going in through his nose. If you look beyond the amazing mustache, you will see a very concerned daddy.

One thing that is hard to convey is the level of caring, skill and talent we see in those working with Henry each day.  Below is nurse Susan - just an compassionate, lovely, and bright individual. She worked with Henry in July after his first surgery. We hoped Susan would be assigned to Henry again, and the universe cooperated!

Today was magical in a lot of ways.... just to see Henry doing so well and making progress... actually on the road to recovery, not just on the road to "well enough to get to the next surgery".  A while after Henry came off the ventilator, he became significantly agitated (for lack of a better word - thrashing around, clearly uncomfortable). Because they were worried about dropping him into a sedated state that could compromise his extubated status - no pain meds were allowed to be given.  We thought that perhaps he would settle with some cuddles.... Again, that feeling of them handing your little one back to you after all that he has been through is a feeling beyond description.... A complete flood of relief...

And it worked.... Henry completely settled and was just comfortable and content. His vitals all normalized (blood pressure and heart rate dropped, oxygen saturations came up). It felt amazing. For both of us, and I think for daddy too.

One of the most magical parts of today is related to the title of our post.... How does Henry pay it forward?  We talked quite a lot with Dr. Ross today about the procedure and how well it had gone (how well Henry had grown between the 1st and 2nd surgeries, how well his surgical and post-surgical course have gone).  Dr. Ross told us that he has changed his way of thinking because of Henry and what Henry's case has taught him.  Historically, they may have done the Norwood (Henry's 1st surgery) and the Yasui (this surgery) all in one procedure.  Henry's was staged, with the initial procedure basically as a new born and the second procedure hopefully when the child is 4-6 months old or at >5.5kg.  Dr. Ross said that moving forward he is going to plan this staging.  Henry is teaching us so much even at his young age.

A strange thing happened yesterday. Hal was walking our double stroller and oxygen tanks back to the swagger wagon, and walked by the donor board for the Stollery. There must be a thousand small names on that board. While in motion, he just happen spot one sole name - the only one that his eyes focused on. It was none other than Dr. Ross. Not only has he helped build the program in his unbelievable skill and dedication, but he also gives back. The universe sent the right message - Dr. Ross does not do this for the money - he gives that back - he does this because it is his calling. We are really fortunate to have him looking after our dear Henry. Western Canada is blessed to have this centre. Dr. Rebekah is also on that donor board!

We have worked hard to give Dr. Ross the accolades he so deserves. We struggled with the right words, timing and approach. Dr. Ross is not long on words, though we like him and his style immensely. The opportunity to shower him with our gratitude and compliments came today. Almost predictably, and wonderfully, it was met with his diversion of the accolades to his team. He credited them with the success and quickly disappeared again. Dr. Ross is a teacher in many ways.

Special thanks today to Denise White, who not only drove from Calgary to take care of Magnus for the day, but she arranged childcare for her own 1-year old to help us out.

Magnus still had plenty of energy when we returned from the hospital to tow Daddy around the toy room.

..and not to forget Owen... He had a nice time with our friends, Greg and Nicole, who came for a visit at the hospital. Gord came too, but we were just with Henry at the time and we appreciate his coming by too!

Thanks to everyone for following our progress and supporting us. We will all sleep better tonight as we have made it through the most critical 24-hour post-op period.

What a day - Henry is out of surgery and he did great

This morning Dr. Ross told us to expect to see him around 1, but more likely 2.... at precisely 1:10, he appeared... At that moment, it feels like your heart stops... Is this too soon for things to have gone well? Does he look happy? Is there any visible sign in his demeanor to tell us how things went?  Your mind races and so does adrenalin.  Happily, Dr. Ross was full of good news.  He was able to complete the Yasui as he had hoped.  The muscle bar they have queried over the past months re: if it will be amenable to resection...well, they didn't have to move it.  It wasn't in the way and they were able to work around it. No pacemaker. No bleeding. Pretty much all went according to plan. There are more details but thats enough detail for the blog.  What an immense relief.  For the second time in as many surgeries, Henry has come through with flying colours.  Henry's oxygen saturations on oxygen were sitting in the mid-70's pre-surgery and are now 100% (just like most of us).  His colour is better (since his heart now pumps "red" blood - not a mix of "blue" and "red").  Henry has an RV (right ventricle) to PA (pulmonary artery) conduit.  Since this is bovine tissue and will not grow as Henry does, it will have to be replaced -- good news is that shouldn't be for around 5 years from now.

This is a picture of a small team bringing Henry from the OR to PICU. On the left is the anaesthetist. Front right is Dr. Ross' surgical fellow (who also assisted on Henry's 1st open heart surgery).  It is the happiest sight on earth to see your little one coming back to you after such a big and complicated surgery.

The next 24 hours can be rocky and we hope and pray all will continue on its current trajectory.  We just spoke to the night nurse on the phone and Henry will be weaned down to the lowest pain meds around 2 am with the goal of getting him off the ventilator overnight/tomorrow am.  From there, if his minimal bleeding continues to diminish, the chest tube removal will follow. Following those 2 things, Henry will likely transfer to a lower level of care unit.  Dr. Ross told us multiple times post-surgery how great Henry's surgery went and how well he is doing.  Again, such a relief that they did a very complex and pretty rare procedure and that it was 'textbook".

Below is Henry's nurse, Cassandra, and the RT trying to sort out issues with the ventilator. To the right is a closer shot of Henry. His chest, unlike last time, is closed under the skin.  He is a little bit swollen, but this will increase over the coming hours until he starts to diurese. It may be hard to tell with all the tubes and bandages, but Henry looks absolutely great.

After a total of 2 hours sleep over the past two nights, we hope tonight will bring a bit of much needed sleep.  We are so proud of Henry and so thankful he is much more than ok.  Thank you all for all your messages and support and the visits from Ione and Lisa. It means a lot to our family and it helps us more than you can know.

Henry is in Surgery now

We arrived at the hospital this morning at 6 am.  Henry has been such a trooper. We were able to feed him at 11:30 last night then nothing but sugar water was allowed until 4 pm.... well, true to Henry form, he started to chat at about 3:45 and so I thought we'd give the sugar water a go (it's not like this is the sort of thing you give a baby!). Well, he quite enjoyed it. So much so that he decided to stay awake until we got to the hospital, after a good ole 30 minute snuggle fest with daddy. He was all smiles today (sorry, i can't seem to flip the picture). 

Henry and Owen really raised a ruckus in the clinic this morning...not crying, just a lot of chatter.  Notice a very tired Hal is still hanging in there with his "Movember"... only 2 more days to go :)

One thing I did not expect....which was nice, but at the same time extremely hard.... When they take an adult away to surgery, they put you on the bed and cover you up and off you go. When it is a baby, Mom or Dad get on the stetcher to hold baby and they wheel you to the OR that way. This was very emotional for us. Nice that we could enjoy as much time as possible with Henry before surgery, but hard to be so close to where it is all going to happen. Here we are waiting just outside the OR for the nurse to come and take Henry in.

Henry's hands appear to be bandaged because they put anaesthetic gel on them to numb them before some of the lines go in.  Because he constantly has hands in mouth, he would end up with nothing more than a numb mouth were it not for putting on the gauze.  He is in constant motion, so the tiny hospital 'gown' ( or mumu as Hal called it) didn't provide much in the way of coverage..

Dr. Ross just came out of the OR.  They have completed the imaging and they know which procedure they are going to do.  It is what we had hoped for - the Yasui (biventricular) repair.  It is a very complicated procedure. Out of 400 open heart surgeries that are done at Stollery in a year, 1 is a Yasui.  Dr. Ross feels that Henry is a good candidate.  Now we wait.  And now is the time we can use all your love, thoughts, and prayers to will everything to go well for Henry.  Dr. Ross expects the surgery to last until at least 1 or 2 pm.

One final image for this post..... Henry, though he has grown to about 2x the size he was for his first operation, still isn't that big...and he seems to be fairly amused by this fact...

Special thanks to our friends Kyle and Natasja who are taking good care of Magnus again today. 



Henry's Second Surgery - Tuesday Nov. 29, 7:00 am

After a long and anxious drive through the massive Alberta windstorms, we arrived at Ronald McDonald house yesterday. We had forgotten the trauma to some degree, but the feelings came rushing back quickly. This whole experience is like walking through a war zone, the soldiers are children, the field medics are parents - cleaning wounds, sorting medications, preparing food and changing soiled clothes. Unlike a war zone, there is only love and no enemy, except for disease, injury and 'defect'.

After setting up camp, and a visit from good friends Kyle and Natasja ( Natasja looked after Magnus today and will again tomorrow - with their cute daughter Zoe, same age as Magnus ), we fed, washed and began a bedtime routine. No small task with 3 boys, under two, over tired, and in a new environment all in one room. All told, the routine continued for the night. At least one was always unsettled or stirring. Between the two of us, we made our way through, but with no sleep whatsoever. It's not good to be this tired in this volatile and emotional place, but again, there are no choices. 

PAC (Pre-Operative Assessment Clinic)

Today we attended 6 hours of preparations for Henry’s surgery:  weigh/measure, ECG, bloodwork, chest x-ray, social work visit, talk with Dr. Ross and with the anaesthetist Mark Gale.  A long morning after a sleepless night for all of us.  The “talk” with Dr. Ross didn’t feel as horrifying as last time. There are two options for the surgery and they won’t know until they are in what is the best one.  We will only know tomorrow what is best. Does the surgeon choose the 'play to win, all in option' or does he choose the 'play not to loose option' - at least that is sometimes how it feels. Practically speaking, he will choose the best option for Henry - and either way, Henry will need more surgeries in the coming years. 

Cindy guided us through the process today. She is lovely, and the boys took a big shine to her right away. She certainly has a way about her, and has chosen the right profession!

Dr. Ross was pleased to see how Henry is doing and how well he has grown. He is quite positive that Henry will do well in surgery, whichever surgery is chosen - Yasui or Norwood/Glen/ Fontan....

It's been a long couple of days, but was ask you all to stay positive, send your best energy to Henry tomorrow and the days to follow. Please help us 'will' this in the best direction for Henry. 

We will bring this Four Leaf Clover along tomorrow, from Brian and Jean, hand picked by Brian on Salt Spring Island a few weeks ago. 

On a different note - here is a this years Santa Pic - Santa insisted we join the Picture ( 3 boys was too many for Santa this time, with Henry's oxygen and all ). He insisted that Jill sit on his knee. Maybe Hal's ridiculous Movember Mustache sent Santa a message that Hal was just an awkward teenager? ). Magnus was NOT going to get any closer to Santa than the barricades without some family support.

Here we go again...

Well, after the false start of a few weeks ago, we are again ready to leave for Edmonton on the weekend. We will drive up on Sunday, as Henry's surgery is scheduled for Tuesday Nov. 29 (time TBD).  We will spend 6 hours on Monday at the pre-op clinic. They will do some basic assessment of Henry and we will have "the talk" with Dr. Ross.  We expect he will sit down with us and explain what he hopes to do and what the risks of that are (this talk was one of the hardest and scariest parts of the process the 1st time Henry had surgery.  Not because Dr. Ross was anything but wonderful, but because of the stark reality of what was ahead of Henry and us).  At this time, we are aware of 2 surgical options for Henry.  One is much preferred, but it depends on how Henry's anatomy has grown and changed as to whether he can have this or whether he will have to have the less preferred option.  We may not have an answer to this until the surgery is complete. It has been a great source of stress, but we do our best to stay positive.

Although we knew the time would come for Henry to have another surgery, it feels like it has come too soon.  We want him to get big and strong, but getting bigger and stronger means that he outgrows his shunt (placed in the first surgery) and that further surgery is necessary.  A very good and kind friend who has a daughter who went through multiple open heart procedures several years ago summed things up very well when she said, "The first surgery is hard because you love your baby, but the second surgery is so much harder because you know your baby."  It's so true.  Now that Henry is a smiley, loving little guy, it really tears at our hearts to think of what he has to go through.  We believe he is going to do great, but if we could take his place we would in an instant.

We are always very thankful to our friends and family who support us.  We want to say an extra special thank you to those who have gone above and beyond in trying to help us.  This includes booking flights, booking alternate childcare and taking time off work to come to Ronald McDonald House to take care of Magnus.  We can't thank you all enough.

In the Morning Light....

A little rest, a little time, a visit to the cardiologist and the world looks better again. Though it was a very disappointing setback yesterday, it is an obstacle that Henry can overcome - ergo - we can overcome it as a family, and with you, as a community. What have we really lost but a little time....

Henry went to go see his Cardiologist Dr. Fruitman yesterday. He sure loves her. All smiles all the time. As a matter of fact, he loves them all there. Patty too. Just to be on the safe side, since there was a delay, and we had begun to 'chase the O2 numbers' with more and more O2 flow, it was prudent to have a little check up. Henry is doing well, and as a matter of fact, his O2 requirement is back down to 1/4 litre.

We had been starting to feel like we were working hard just to keep Henry alive to get him to his surgery. That is a very overwhelming and burdensome feeling. Turns out, Henry in fact is doing really well. He will move strongly into the next couple of weeks.

We have been isolating ourselves somewhat, due to our agenda of keeping germs at bay. Not typical for us, but if anyone in our house gets sick, has a cold, runny nose etc, this would be a big problem for Henry's surgery. We need to be sure to be free of all sickness. At this time of year, that is always tentative... We will do our best of course.

We've decided to see the upside of this delay. Henry will be bigger and also stronger for this next surgery. They had hoped he would be 5.5 kg for it - yesterday he was 6.0 kg. Maybe he will be 6.5 kg by then? Who knows. I doubt he shrinks though :)

It's really clear to us how blessed we are to have friends and family supporting us like you all do. We can't effectively thank you all enough for the support, the prayers, the help, the kindness and the love. You have made it so much easier by staying with us through this. In fact this delay has prompted offers of MORE help from those we had scheduled, and more people offering to help.

It's hard to ask for help, especially if you are not used to asking. It is even harder to accept it. We have had to 'learn to receive'. That sounds odd, but it is not a skill we are necessarily good at. We have had to get much better at it, and for those that have had the patience to help us learn, to offer help in tangible ways and in ways that we simply have to accept, we thank you a million times over. You have helped us immensely.

Our job from here til then is to keep Henry healthy, have him grow and to stay positive. Yesterday was a slip in that mentality for some of the day, but we are back on track today. Thanks for all your patience and support.

Henry remains a very happy and smiley baby. Magnus and Owen remain proud of him as do Mommy and Daddy.

Here are the twins with Mommy this morning.

Our Best wishes today to Chris and Janice Hooper! Can't wait to meet the little one soon! That's one lucky little baby coming into the world and into the arms of an amazing family!

Henry's Surgery has been Canceled for Friday....

After weeks of preparation both emotionally and practically, we received a devastating call this morning. Henry will NOT have his surgery Friday. There are no beds in the PICU at Stollery - therefore no place for Henry post surgery. They will have to reschedule. Next date is Nov. 29. We are crushed beyond crushed.

The stress of this is beginning to take it's toll. Henry is showing more signs of needing this surgery. His O2 requirement gets higher daily. The delay feels like a dangerous dance - and once again - we have no control. None. We simply have to ride along.

The emotional fallout today is big. Chaotic thoughts have raced through our minds for several days. This delay triggers even more chaos. Closing our eyes to 'sleep' sets off a never ending battle of 'good vs. evil'  dream in our minds. Of course we try hard to will 'good'. It's not always easy. Lack of good sleep compounds stress and worry, worry and stress compound lack of sleep. Overall, we are okay and keep chaos at bay.

Beyond our own emotional battles that we wage, we have had so many good friends that selflessly volunteered to help us during the coming week (s). Many had booked flights, arranged work and child care schedules, and prepared to help in any way they can by coming to Ronald Mcdonald house to help with Magnus and perhaps Owen during this time. We will need to reschedule all of this. With any luck we still have their support.

Cancel Ronald Mcdonald, reschedule help, cancel Vital-Aire, unpack what's been packed and worst yet, reset the emotional countdown clock once again.

Today is a hard day. We are crushed.

Henry's next big surgery is Nov. 18 .

( Henry enjoying time with Omi )

We knew it was coming, but this has come too soon, and yet not soon enough. We are completely conflicted - worry or relief, relief or worry. 

Henry will have his next surgery next week on November 18. The emotions of his last surgery are still deeply within us, with little time to gain strength. The constant quiet worry that continues makes this early surgery a blessing. His dropping O2 sats and his need to be on oxygen underscore that Henry needs this surgery soon. Again, there are not decisions to make. 

Henry has done so well since coming home. He has grown to over 12.5 lbs since his 4 lb. 14 oz birth. He is meeting all of his milestones nearly on the same days as Owen his twin brother does. He smiles, he coos, he wiggles. We are so proud of little Henry and his amazing ability to be happy, and of Owen and Magnus who stand by Henry's side.

We are not yet sure exactly what the next surgery will be for Henry. Even with 3d Echos, MRI's and the best team of cardiologists and surgeons, his surgery will ultimately be decided on the day, by the surgeon - Dr. Ross. This is more than a little bit painful for us to bare. How can we truly prepare, when we will only know what Henry must endure after the surgeon emerges from the operating room?

We will leave on the 16th. Please say a big prayer for our Henry, Magnus's second banana, Owen's dear twin, our deeply loved son,  for another strong performance and successful second surgery.