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.

Henry's home....and now begins preparations for the next phase...

We haven't had time to update in a few days, so there are a few pics to add in from our "homecoming"... three boys under 18 months seems to be a reasonable excuse to be slow on posting, but nonetheless, we'll try to do better. :)


This is what our stroller looked like leaving hospital.. still an adjustment, but such a great one!! It felt like we better run out of the hospital before someone told us we weren't allowed to take Henry and Owen home. It's quite something to realize and physically experience your TWO babies coming home!!  What a wonderful day and so long in coming.

We are all home safe and sound and adjusting well to life with a family of 5!!

 Yes, it is busy, of course...but we are thrilled for that.  We have had a few nights of 2 hours total sleep (not in a row), but we don't think that will be the norm for us.... just need to get our routine with the boys down.  Henry, as we've mentioned previously, has an NG tube.  Because it is extremely important that he gain weight adequately (to set up for his next surgery), he is only 'allowed' to breastfeed 3x per day. We weigh him before and after to know what he's taken and, if he doesn't get enough, we use the NG tube to top him up.  For the other feeds, Henry gets EBM with fortifier (basically formula is added that's loaded with fats).  We try to bottle him, but if he is too tired and isn't interested, again, it goes down the NG.  This is most challenging in the night. At 3 am, we have to give Henry time to wake up, then see if he will get going on bottling... that part can take 20 minutes or so, at which point (if things aren't working out) we go to the NG - check to make sure it is in the stomach, transfer the bottled milk to syringe, attach and feed through the tube at a slow rate (2mls per minute).. On nights like last night, this takes about 45 minutes..Add baby #2 to this scenario and time sure passes in a hurry!!  The good thing with all of this - the stress of it doesn't really compare to the previous weeks leading up to and going through Henry's surgery!! .....not even close....

Having twins remains a huge learning experience. We have two cribs in the boys' room, but we have been sleeping them together. They tend to settle each other.  We put them close together and not necessarily facing one another....but before long, they are always face-to-face...much like below.  And, it is true that when one is screaming to be picked up or fed, the other doesn't necessarily awaken....at least not at the age/stage we are at.

As we mentioned in one of our first posts, Henry's surgery was the first stage of a two-stage surgery. The surgery he had (called the Norwood procedure) is the first phase of the Yasui, which he will hopefully have at the age of 4-6 months, depending on his growth and how his anatomy looks as we approach the surgical date.  The next surgery is also a big surgery, but not as big as what Henry just had. We hope that he will do as well as he did this time (there were 4 other babies who had the Norwood within days of Henry - some before and some after- but Henry was the first baby to be transferred back to his home city due to no ongoing surgical issues... Awesome job Henry!!).  We try not to live day-to-day in fear of Henry's next surgery, but rather enjoying our family time and focusing on Henry's primary goal - to gain weight and grow!! Plus making sure his brothers are doing well... Henry is trucking along.. He remains bigger by about 300 g than Owen...despite all he has gone through.

For those parents reading this as they go through their own journey, we will try to add a video within the next few days to show some of the procedures we have to go through regularly (taking Oxygen saturations, giving meds, changing the NG, weighing, etc).  When they initially teach you to manage your post-op baby, you may feel like running away, like the stress of trying to keep your baby alive is just too much...but day-by-day, the fear is a little less and you get used to looking at your baby (not the scale or the monitor, or the other external things) to see that he or she is doing ok.

Exhausted but Blessed

Hal and Jill

Last day of School before Summer Break Feeling!

Henry has come so far in his short recovery period after surgery - he is in fact coming home tomorrow! We are beside ourselves thrilled. Car seat installed and ready to roll. Magnus has the soothie in hand and is ready and willing to jam that thing into Henry's mouth at first peep. He has Owen covered on that front already, though "gentle" is a constant reminder we need to make.

Here is Magnus Helping me carry Owen into the house.

As you can see, Magnus is very much enjoying being the big brother role!

Here is a quick snapshot of the boys snoozing together today.

As Henry gets better, and their weight equalizes, they look more and more alike. So far Henry is still the bigger of the two ( by 200 grams or so ) in spite of everything.

This is Henry looking more and more like Owen ( a great sign of the progress Henry has made )

There can be no doubt that these three are brothers, and even less doubt that their parents are very proud of all three. Our little bear cubs will have so much fun together as they grow up!

Here is Henry being weighed before and after eating. We need Henry to grow big and strong before his next surgery, in 4-6 months.

Home Teaching

Henry continues to look better each day.

Yesterday, we had a very special visitor, Dr. Jill Bolton, Henry and Owen's neonatologist during their time at ACH NICU.  She was wonderful with Henry and helped him be as ready as possible for his surgery.  It was great to see her and she was so kind to bring Henry and Owen hand-made knitted quilts (made by her own mother). We will put these special items in a memory box for the boys.  We feel very lucky to have been taken care of by Jill and her great team, as well as Dr. Clark, Dr. Majeeda, Dr. Fruitman, Dr. Meyers, Dr. Pollard, Dr. Cooper, Dr. Patton, Dr. Lahda, Dr. Ross, Dr. Rutledge, Dr. Cheryl, Dr. Bulal, Dr. Joynt, Dr. Townsend, Dr. Quinonas, Dr. De Caan, Dr. Hornberger .... countless special NICU, PICU, Cardiology nurse, more doctors, more residents, more Fellows.... Literally 100's of people have helped us in Henry's journey!

Today, there was a lot of action. Henry's holter monitor (to record 24 hours of his heart trace) was removed. This will be downloaded to a computer and analyzed to make sure those 'extra beats' they saw are regular post-op stuff.  After that, a nurse came and taught Hal and I how to insert a nasogastric (NG) tube. Because Henry is just getting up to speed with eating by mouth, he sometimes tires out and doesn't eat as much as we (and his medical team) want & need him to.   When Henry comes home, we will have to weigh him pre- and post-breastfeeding.  This will allow us to know how much he took. If it isn't enough, we will put expressed breast milk down the NG to "top him up".   We will change that tube once per week.  Insertion takes no time at all and doesn't seem to bother Henry too much.  Hopefully he won't need it for very long.  Today, Henry breastfed and didn't seem to have a problem at all.  He had 2 visits from Occupational Therapy also - they are experts in feeding and positioning. They wanted to watch us with Henry and see if we or he needed any help or tips. He did great and they had no concerns!!

Henry had another echo today.  This is normal post-op to continue to make sure things are looking as they should. The tech, Dell, was great and talked us through much of what he was seeing.  He showed us that, by either luck of the anatomy or skill of the surgeon (or both), the VSD (hole in the heart) lines up directly with the shunt (or tube that currently carries blood to the lungs from the heart).  This is good, as it allows Henry to maintain very good (high) oxygen saturation because of the great flow to and through that shunt.

We also had visits from cardiology (Dr. Meyers) and from a cardiology clinic nurse (Julie).  We had more teaching about things to look for and expect with Henry over the coming months.  They were great and took so much time to answer any and all questions we had.

So, there is a lot of mention of home and teaching....and we are expecting to take Henry home this Friday!!!!  We are beyond thrilled and so look forward to just being at home as a family again.  Much as we love all the medical professionals who have been taking care of us, it is A LOT of time, effort & energy to spend 9 - 5 at a hospital each day.

A final note today... a total aside - for families going through this and reading this blog for informational purposes..... Babies with or without heart problems cry!!  In going through this process, you become highly stressed (of course) to the point that you automatically panic that something is wrong with the heart if the baby cries..... Just something to remind yourself about... Yesterday, Henry cried pretty hard about the removal of some very sticky tape from one of his wounds or tubes.... I felt, honestly, so panicked (almost to the point of ridiculous)...until Hal reminded me that non-cardiac babies cry too :)

We will upload some pictures again tomorrow.....so you can see for yourselves the progress Henry has and is making.

Thank you, again, for all your support and for following our journey.

August long weekend

Henry is settled in to his room on the cardiac unit at Alberta Children's Hospital.  On Saturday, Hal, Magnus, Owen, and I spent a few hours visiting.  Magnus enjoys the long hallways with the many playing areas... though he does pretty well, it isn't the best place for a busy 17-month-old.  He seems to realize more and more that these 2 little grunters are somehow associated with him.

Henry continues to look and sound a little better each day.  After intubation, babies (and most adults for that matter) tend to be quite hoarse-sounding for a few days. Henry was initially very hoarse...sounds like he has a very sore throat.  Today, nurse Fareen said it was the first time she was able to hear Henry crying from the hall.  A little progress each day...just what we like to see.  Henry has had a few alarms for 'extra heart beats'.  This can be quite normal post-op and also with non-surgical preemies, but because of Henry's history, this is something they will watch just to be sure everything is ok. They will do this, by having him wear a monitor (a Holter) for 24 hours. They can then download the information and see if it is anything to be concerned about.  There are 2 primary issues that keep Henry in hospital at this point. I believe I've mentioned these previously: fluid balance and feeding.  They continue to tinker with the diuretics, but seem to be getting close to what works for Henry. He still has a little 'wetness' in his lungs.  Henry is now bottling every 3 hours (more like a healthy baby). He is getting 46 mls at this point- he bottles what he will take and is given the rest into his NG tube.  Sometimes overnight, the nurses simply put it down the tube rather than waking him.  During the day, though, Henry has taken anything from only a small amount by mouth right up to the full 46 mls.  Tomorrow we will start working on the breastfeeding and see how his energy is for that.

Here is a look at Henry in his big boy bed. He is doing so well. Henry went outside with daddy today. It was the first time that he was allowed to see the light of day, off the monitors,  after over 7 weeks. He seemed to really enjoy the outdoors, which makes him a Kuntze for sure :)

Henry also had a very nice visit today from Ans. Ans was one of the boys primary nurses at NICU foothills. I think it is safe to say that they might have worked their way into Ans heart too, and Ans into ours. She continues to care about their well being long after her shift ended a few weeks ago. We have been so lucky to have so many wonderful people enter our lives, under such dire circumstances, all fully willing to help Henry get better in such an unconditional way. There are many things that need to be addressed in universal health care, but it stands as a testament, that these wonderful ladies and gentlemen have gone above and beyond in the care of our boys - no one more than Ans. :)

We have so many people to thank for so much support. At times it is overwhelming to know we have so many loving and caring people in our lives. We don't know what we would do with out you all.

best for tonight

Hal and Jill

We are home in Calgary!!!!

The caption says it all.... We got moved back to Calgary today. Hoooraaaay!!!

Ronald MacDonald House was amazing for us from start to finish.  Many special things happened during our time there and things were no less special as we were leaving. Before we left, they invited Magnus to the Magic Room.  It was a room full of donated toys.  They asked him to pick a toy for himself and one each for Henry and Owen.  Here is Magnus trying to decide on his selection.

 Next, they took us to the quilt room.  This isn't the greatest picture, but there were literally hundreds of quilts, again donated to RMH.  They asked us to pick a quilt each for all three of our boys.  It was quite emotional to feel the love and care everyone at the house had for us. This far outweighed the feelings we had first thing this morning when we found out our vehicle had been broken into - a minivan in front of Ronald Mcdonald house....

Below, Henry and Owen had a little snuggle this morning before Henry was air-lifted back to Calgary to Alberta Children's Hospital. We are so proud of all our boys, but today especially Henry.  We were told to expect 2 or more weeks in Edmonton and possibly longer depending on Henry's progress. Every day, it seems, he gets so much better.  In the past several days, they have talked about possible transfer, but today it became reality. We are thrilled beyond words. Magnus ran around the main floor of the house smiling when we arrived home....I think Hal and I did too :)

Henry's first visitor at his new room at ACH, Bulal (a neonatology fellow who took good care of Henry at Alberta Children's Hospital before he transferred to Edmonton for surgery. Thanks to everyone here who took such great care of our boy and got him to surgery in the best condition possible!!

Below, Henry and Owen settle in for a snuggle in Henry's new temporary digs.  They seem to enjoy their cuddle time.

The following picture is in the family room on our new unit at Children's.  It speaks volumes to us, but we would add "Friends" as well:

Day 7 Post-Op

Henry continues to soldier along.  Today, when we arrived, Henry no longer had nasal prongs to give him oxygen (though they sometimes need to put it on when he is sleeping deeply).  He is breathing regular room air!!  They pulled his pacemaker wires too.  Dr. Chloe Joint (our neonatologist in NICU) had to do some tinkering with Henry's fluid balance -- diuretics help him pee off fluid, but not too much and they also have to watch his loss of potassium (which results from the diuretics). Low potassium levels can and were causing Henry's heart rate to dip down to the 70's... They are getting there, but still little changes to find what works for Henry.  Henry's feeds changed today too. They have been giving him a very small, but continuous drip of breast milk through a tube that goes from his nose to his jejunum (past the stomach - to reduce the risk of regurgitation and associated complications). Now, they are moving toward feeding Henry more like a 'regular' baby. He now gets bolus feeds every 3 hours through the tube that goes from his nose to his stomach.  The amount given to Henry will increase every 6 hours or so and when they see he is tolerating this well, we will progress to bottle and/or breastfeeding.  These are all great strides forward for Henry.

I think Hal and I struggled with the weight of this journey today. We are both tired from the relentless stress of the past week and we both struggled today with feeling sad for what Henry is going through now and what he will have to go through in the future.  We are all going to get through this well, it's just going to be really tough at times.

Now that Henry is on less monitors, we have been getting more holding time.  Below, Daddy enjoyed some time with 2 of his 3 boys.

I also got some snuggle time. Wonderful for all of us!!

Today's Progress

Henry continues to amaze us each day.  The doctors talk a lot about how no two babies are alike and that none of them have read the textbooks on what their post-surgical course should look like....well, except for Henry :)  He seems to be following a textbook recovery so far (... I am nervous to say things like this, as we never take anything for granted and wouldn't want to jinx anything!).  Henry's progress today included removal of his CVC (central venous catheter) and they moved him from a full-sized stretcher (that you see in all the previous pictures) to a Giraffe bed (a baby-specific bed - more appropriate to his size). They put the babies on stretchers post-surgery so there is plenty of room for many people to access from all sides should that be needed.  Below is Henry and his nurse, Megan, as she settles him in his new Giraffe bed.

In the afternoon, Henry was transferred back to the NICU... Prior to leaving PICU, he needed another echo (to make sure his heart function and the surgical repairs continue to be as they should) and an ECG.  It was pretty hectic and he was pretty tired at the end of it.  This was a much smaller move (only 2 nurses) than any of the previous. We are making progress!!

Below is a clip of the hand-off from the PICU nurse to the NICU nurse.

Our new NICU nurse, Anne, thought it might be nice for us to get a picture together with Henry in Henry's new digs.... Owen was present, but chose to sleep through this photo-op.

Admittedly, Hal and I are pretty tired out.  We are relieved at the end of each day with Henry's good progress. We are blessed to have our boys, who are so good and such bright lights in our days.  

Sadly, while we were able to celebrate Henry's progress, our fellow parents had made their decision a few days ago regarding letting their daughter go. Sadly, there was not much choice for them to make. We felt deeply empathic for them, as they waited in the family room. It has been 4 days since they made their decision. Life is fragile and cruel.

Henry Rallies!!

This afternoon, Henry had an ultrasound of his head.  For parents going through this process, it might help to know that there will be lots and lots of monitoring (in addition to the bedside monitors) - echos, ultrasounds, chest xrays, bloodwork upon bloodwork.

 The barrage of tests can make you feel like something is wrong, but it is pretty standard. They take no chances with these little ones. If they are too hot or too cold, they will get bloodwork to check for infection.  Both head and abdominal ultrasounds are routinely completed on preemie babies when they are born and then again when babies reach term.  Each time they have a procedure they will have an xray post-procedure to make sure all their lines remain in place. When they want to re-initiate tube feeds, they will also xray to make sure they are feeding into the stomach.

The big news of today is that Henry was successfully extubated without difficulty or complications!!!

 They also removed his foley catheter and the dressing from his surgical incision.  As I write this, I am uncertain of which pictures and videos to share.. Today's feel extremely personal and I am filled with emotion as I review them.  You know intellectually that your son has had open heart surgery (of course), but it becomes full reality as you see the healing incision for the first time.

Below are the videos of myself and then of Hal holding Henry for the first time since his surgery.  I did not expect the flood of emotion I had.  As our nurse, Sue, was passing Henry to me, I just felt pure happiness to have him back.  As he settled in to my arms, the weight of the past 5 days washed over me.  I remembered the horrible feeling of holding and kissing Henry and then praying that it wouldn't be the last time as I watched a team wheel him away to the OR.

Here is Hal's first daddy / son cuddle with Henry post surgery. He felt that same wave of emotion.

Here is an explanation of some of what is 'helping' Henry get better.

progress for today

We haven't been able to spend much time with Henry today... not because of Henry though.... Shortly after we arrived to the unit, one of the other babies on the unit developed a problem. There was a lot of medical staff running around and all parents were asked to leave the unit. It has been several hours and we have not been allowed back in. We hope everything will be ok for that family....it seems far from ok at this point...

Henry has had a good 48 hours.  His LA line (which was in his heart to monitor pressure) came out and shortly after, they disconnected his pacemaker. He has not needed it since day1 post op. The wires remain in place and will until shortly before Henry's discharge from here (just so they are in place should Henry develop a problem controlling his own rhythm). They can pull them at the bedside (basically they just tug them out).  Henry also had his chest tube out overnight. Dr. de Caen said that this is the thing that causes babies most of their discomfort - every time they move it moves and rubs inside their chest. It just isn't comfortable. It is a relief and definate progress to see that tube go.  They have, as Hal mentioned previously, been slowly coming down on Henry's pain meds (primarily morphine). This is positive as it leads to better and deeper breathing and allows them to move toward weaning the ventillator (breathing support).  We are hoping in the next hour or so, they will attempt to extubate Henry. They have given him a few doses of steroids this morning. This helps to ensure that any swelling in Henry's airway is reduced so he doesn't run into troubles when they extubate.  As you will notice from the pictures we have been posting, Henry is intubated nasally -- so, if all goes well, all that tape will be off his face and the tube out of his nose today!! Fingers crossed.  Henry may also be transferred back to the NICU (just up the hall) in the next few days.

We'll post a few pictures later if we are allowed back in.  Hopefully we will all get a look at Henry's face today!

Thanks to you all for following us and for all the great messages of support. They all help and we really appreciate them.

Progress Is sometimes hard too.....

Henry is doing well today. His vitals are stable and within expectation. Shown here is Dr. Allan De Caen and Dr. Paul Daughty, with Nurse Sara looking on.

What I mean by the title is that Henry is moving forward in his recovery, but part of that forward motion includes reducing his pain medications ( morphine etc. ). Since Henry is still very weak from his surgery, he does not make a sound. Not a peep. Not a single teardrop. The expression on his face at times is beyond heart wrenching though. It tears a parent to pieces when there is nothing we can do except try to provide comfort. He seathes in pain, and it hurts us just as much or more. We gently stroke where we can. His head is very bandaged holding his Ventilator tube, his hands, arms and feet bound with IV's, so much so that we can not really hold his hand. We find spots of skin to stroke gently, hoping that he knows we are with him and that we are really sorry that he has to go through this. His legs, one foot and a bit of forehead get most of our attention. It's hard when a parents job is to comfort, protect and love their children, and we can only provide small amounts of each. 

We spend our days doing our best with Henry, while holding Owen close. 

( Owen providing a convenient example of what Henry will soon look like again :)  )

Magnus is not with us in the hospital of course, but we tell Henry about him. One day soon, the boys will be together. We had heard so many times over the last several months, that we would be busy, it would be noisy. We look forward to that day. We are more than up for the task and hope we are all home soon. We miss Magnus during our times with Henry, but there are no good answers to do it all.

Henry always has 'spare blood' available at the foot of his bed 'just in case'..

As we peer around the room of the PICU, the stories that are playing out are unimaginable. From hope to deep sorrow. Each child needs 1000 hugs, and it's hard to understand why they have been dealt this crappy hand. Some look scared, some look defeated, some defiant. All parents look worried and tired, but hopeful. 

This is what worried looks like in our house - Jill the morning of the surgery, Me the morning of surgery;

One man and I spoke the other night had a choice before him as horrendous as it could be. The question for him was - will his wife and he choose for their newborn baby girl to continue a life that has no hope of survival, or 'let her go' mercifully? The weight on their shoulders must have been one million times what we felt on the day of the surgery. We had no choices, no decisions, no options. That in itself was merciful for us. They do not have that luxury. The burden they will carry....

Magnus has several 'friends' here at RMH. Keira has taken a particular motherly liking to Magnus. Keira is 5 and says ' if I grow up, I want to have red hair.' My god, 'if'. She is a darling. Her chemo continues this week. 

Camryn has no legs and only one partial arm. She had a terrible virus ( RSV ) and Strep. She is Magnus'  age. She is here getting her prosthetics. She has a warm smile for us every time we come 'home'.

We have learned a lot while here. More than can ever be written or summed up on a blog. This type of thing changes people, of that there is no doubt. We are changed, both Jill and I. 

Henry is doing well, given the hand he has been dealt. We know this, and he is an inspiration to Jill and I. He is 6 lbs of tiger, and fights like 600. Good boy Henry, keep it up, and we'll do all we can from here. 

Here is Henry this morning, sore but defiant, strong and yet so fragile. 

Henry is lucky to have you all as his cheering section. We get all your notes and every one is special and appreciated. We can't return them all, but we get them and they all really help. 

thank you

Hal