Merry Christmas, Heartfelt thank you for all your love and support and all the best in 2012!!

It has been almost 4 weeks since Henry's surgery and we have been meaning to update this blog.   Henry and our family have continued in our recovery and progress.  Below (left) is a photo of Henry just 2 weeks post-surgery.  On the right is a photo of the boys horsing around at about 3 weeks post-surgery.. Henry's scar continues to improve and fade (they do make the incision in the same location and attempt to minimize new scarring).  On the right, you can see the scars from where the drains were (the 3 holes moving horizontally across Henry's belly.. the middle one is worst, but only had the stitch removed days before this picture).

We talk about our family recovering... You don't actually realize the state & severity of stress that you become used to.  In our process, we have worried constantly since February when we learned Henry had a problem with his heart. I think we believed the stress would evaporate upon arriving home after such a successful surgery with the preferred procedure and with Henry flourishing.  It isn't quite accurate and we share this for those going through a similar process.  It is almost like post-traumatic stress (as we define it as a lay person) - sometimes small stresses like Magnus almost falling produce an over-reaction response like an adrenaline rush followed by a feeling of complete depletion ... Sleep was initially very disrupted upon our return... and our appetites were pretty much nil for several weeks... perhaps these are the result of such a high state of stress for such a long time??   It is getting better for us all, but if you are going through this, know that the stress doesn't just disappear.... it seems to be more of a dissipation..

We also think a lot about the many families we met during our times in Edmonton.  We wish that complications didn't have to happen and feel heavy hearts for the families still facing much stress and uncertainty.  We feel sad that many of them are still in Edmonton and away from their families over this holiday season.

We are getting back to living regular life, enjoying our kids, and generally our life together.  For Hal, he has had the additional task of returning to business and giving renewed focus to his goals there... not an easy transition with all that has and is going on.

It's hard to believe that only a few short weeks ago our whole family was uprooted and Henry had such a complicated and serious operation.  Here we are enjoying Christmas Eve.

Here is Henry enjoying a Christmas morning snuggle with Daddy.  No one has been happier to be home than Henry. It is a rare moment that he isn't smiling.

Here's what we really looked forward to when we knew Henry had a problem with his heart..... him being able to horse around with Daddy just like his brothers do!! Magnus is in red, Owen on the left and Henry on the right.

We have continually tried to thank the many wonderful friends and family in our lives through this process.  If you ever doubt the goodness of people, there is nothing like a health problem or crisis to bring out the best in people.  The week before Christmas, we had a call from a good friend to let us know she and a friend were going to take care of the kids while we went out to get Christmas organized for ourselves and the kids.  There was no question of "would you like us to" and no option given except to pick the day... So, for the first time in 7 months, we were able to go out for several hours with no kids, but knowing the kids were in good hands.  What an amazing gift. Thank you so much Yvonne and TJ.  Only a few days ago, another wonderful gift.... Our friends Cynthia, Greg, and Yvonne and Brian (same Yvonne that organized to take care of the kids) called us to let us know they had arranged Christmas dinner for our family from the Westin.  What a beautiful, kind, and wonderful gesture.  We can't thank you enough for this. Dinner was wonderful.  There would have been no way we could have prepared this kind of Christmas dinner ourselves this year. This year we needed this family meal more than we ever have before. Here are Hal and Magnus checking out the spread.

As we see 2011 coming to a close, we are just so happy and relieved in how our process has gone. That said, we hope and pray that all will go well with the families we know who are at various stages of recovery, but also families who are faced with new challenges, unknowns and stresses.  We hope we can be there for them as so many have been for us...

Merry Christmas to you all and all the very best to you in 2012.  Love from the Kuntze5.  The last parting picture is Henry - first up on Christmas morning, sharing some special alone time with mommy. I don't know who needed this more, but what a nice gift from Henry to mommy.

We are home!!!!

Yes, you read it right!!  We have known for a few days that if all continued well, Tuesday would be our potential discharge day.  When we arrived this morning, Henry was "missing"... just down the hall having an echo.  He soon returned, followed soon after by his cardiologist, Dr. Rutledge.  She asked us if we wanted to take him home today.. Of course we do!! After some paperwork, some teaching by the nurse and pharmacist, we were on our way!!

Thanks to Ione Hooper for yet again helping us out.  She was lovely to come to RMH to take care of the boys while Hal and I got packed and ready to go.

It was a bit hectic getting out of the hospital, but we did manage one picture.  Owen and Magnus are in strollers and Henry is in the baby Bjorne with Mommie.

Thanks to Cathy Gardner for the delicious lasagna and fresh bread awaiting us on our arrival home.  Great comfort food for two very tired, but very relieved parents. Thanks also to Dave Boudreau and Dave Gardner for clearing the driveway.

Henry will see his cardiologist, Dr. Fruitman, in 1 week for a repeat echo and monitoring his progress. He will see his pediatrician, Dr. Yeung, in 2 weeks so Dr. Yeung can start to get to know the new Henry.

The only snag - chasing rare pediatric Cardiology drugs until 11 pm. Not exactly what we wanted, but heh, we are sleeping in our own beds tonight!

Yeah Henry - you truly are mighty and we are proud of you son!

5 Days Post-Op

And Henry is on his own -- no IV (thought there is still one in his foot, just in case....but it is locked off), no drains, no pacing wires, no oxygen, no feeding tube, no support....Only a couple of monitors on his foot, chest and belly to keep track of heart rate, breathing rate and oxygen saturation levels.....and here is how good he looks (he is on Hal's right).  Our happy, smiley lovely little Henry is back!!  His colour is no longer appreciably different from Owen's (prior to surgery, he looked a little darker.... related to the mixing of 'blue' and 'red' blood).  It was so so nice not to see "the defeated", tired look today. Henry was almost all smiles (...and, as a result, so were we).

Magnus spent the day, once again, with our good friends Kyle and Natasja and their little cutie Zoe.  Zoe is ready for some hugs and playing..... Magnus seems to take some time to warm up.... but once he does..... It's nooooo problem.  Thank you so much to Kyle and Nastasja for taking care of Magnus for several days during our time in Edmonton.  We sure appreciate it.

Tomorrow Henry will have another echo to check that everything looks good.  Things continue to move in the right direction.  We are thrilled, relieved, & so proud of the progress Henry continues to make.

Thank you all for your messages and support.  It has made a huge difference for us.

4 days post-op

We can't help but send a quick update of the great progress today.  4 days post-op and Henry is breathing room air with oxygen saturation levels the same as you and I!! The only tube remaining is the NG tube (that they are using to give him medications and feeds)....However, we don't think it will last much longer either. Late this afternoon, we were allowed to give Henry a try at taking a bottle.. We were allowed to give him 50 mls and they would use the NG to top up whatever of the 50 he couldn't get down... Well,  I guess Henry thought there might be a time limit on getting that feed.  3.5 minutes to drain 60 mls (we didn't know there was more in the bottle than he was technically supposed to get).... No troubles and did he enjoy it!!  Here's a few pics from today.  Henry's swelling is almost gone so he looks like himself again. His colour is wonderfully pink and we are all very happy today.

( the picture above is Daddy with Owen )

Overiding Every Human Instinct

One of the many things we have learned is the skill to over ride our natural inclinations. What I mean by that is that we, as normal parents and normal compassionate people, have instincts that lead us to protect, to nurture, to comfort the people around us. Children provoke the strongest of those emotions. The smaller the child, the more vulnerable, the stronger the instincts become. One of the most difficult things is to allow logic to prevail over emotion, to allow pain to be strategically administered knowing that this pain is for the greater good of your baby. Intuition over inclination.

We feel every pin prick, every uncomfortable position, every incision, stitch, every worry and every fear 1000 fold of what it likely is to Henry. We need to control our instincts at every moment, and at every turn. We don't want the nurses and doctors touching Henry, but we need them to. He needs them too. But it still hurts - A Lot - and Often. 

Henry is in unbelievable hands. He has literally had the care of 100's of health care professionals since before he was born. We owe them all a debt of gratitude. Every one of them. We owe you all a debt of gratitude for all your good wishes, mojo, energy and prayers for little Henry. Thank you family, friends, neighbors and friends of friends. With over 6000 blog reads to date, we feel the love. Henry feels the love. We are grateful every day for the support we get from all of you and grateful to the health care workers - nurses, docs, RT's, support staff, admin... all of you - for all that you have done and are doing for us and for Henry.

We believe very truly that the power of positive thinking can help 'will' an outcome. That is not to say however that we are always successful. We certainly have our moments, and they can come without warning, and with some cathartic vengeance. To be brave is sometimes to be vulnerable enough to admit that we are sometimes sad, and sometimes angry that Henry has been dealt this hand. We work hard to quickly remember that this will soon be a distant memory and a very worthwhile investment in Henry's happy life going forward. After all, happiness prevails all and that is our instinct to help Henry bring to his own life some day. Until he can create his own happiness, we'll help it along.

Henry is doing well today. He is resting well between being upset. Who can blame him for being upset. He is sore, tired, scared and frankly, a little sick of it all. In between, he has also started to smile for the first time today. Yesterday we got a half hearted grin but today he is showering us with full open mouth smiles and some even with his little tongue out. What a treat that is for us - medicine for mommy and daddy's breaking hearts.

Since Henry has had enough, and needed a cuddle from mommy, Owen graciously decided to be his 'Stunt Double' for rounds. Here is a little clip of Owen keeping Henry's TV and bed warm while mommy gets some snuggle time in with Henry ( good for them both ).

We may have some fun with a new resident or nurse coming next week with a little Owen and Henry switch up. That's a good sign that things are going in the right direction!

Staying at Ronald Mcdonald House certainly is a blessing. It is our home away from home. We hope that some of the other parents in the home will reach their solution soon with the kids they care about, and we care about too. All come from different social and economic backgrounds, and have lots of factors to deal with. Some show signs of frustration with delays in coming to their solution. 

Though our health care system is far from perfect, it is far from a failure too. We hope that they stay patient with the people looking after them, and focus their immediate energy to their kids, and their frustration to the system in a functional way, vs. the people that are working very hard to help them. Of course, we can not discuss this with them as the situations are independent, variable and not our business. We just know that we have dealt with some unbelievably caring people, that do their very best each day to help those that don't 'want' the help, but 'need' it. That's not to say we haven't been a little ticked at the system for being bumped a few weeks ago, but you soon learn the system of triage that is in place and that the front line people are in it with you, not against you. Stay strong parents that may read this in the future, there is light at the end of the tunnel and just keep working your way toward it. It is not a straight or smooth road, but there is an end and beginning coming.

Special thanks to Emma for the smiles she sends us across the room from Henry. Peanut, at 9 months old you are the biggest flirt I have ever seen. Adorable. Get well soon too sweetie. 

And Lisa Gardner - for looking after Magnus today, after being charge Nurse for Henry yesterday. We really appreciate you helping us along the way.

A tiring day for Henry

Henry's progress continued today, but progress isn't always easy.  Overnight, Henry developed a fairly high temperature which, at this point, can be related to any number of things (underexpansion of the lungs, urinary tract or other infection, regular post-surgical stuff..the list goes on).  For this, blood was drawn and multiple attempts to get urine were undertaken (Henry didn't really get the timing and with each attempt Henry's diaper was freshly wet and they couldn't get a sample).  So far, nothing has come back showing anything concerning.  His temperature has come down to normal levels.

Post-surgically, there are a series of tests and follow-ups that are routine.  Today, two of these things were an ECG and a chest x-ray (to follow progression of lung re-expansion and to make sure the lungs are 'drying out').  Here's Henry, ready for transport to radiology:

For parents who are reading this to learn what to expect, a chest x-ray for a baby is something you should emotionally prepare yourself for (if you decide to watch).  We would have perhaps had an easier time if we knew up front what to expect.... Babies won't just lie down and lay still on the table, so there is a contraption where the baby is put on a miniature bike seat with their legs hanging down below.  Their arms are then raised above their head and held there while a plexiglass contraption that comes in from both sides and goes from their bum to the top of their heads is positioned (essentially, it encapsulates them).  At this point, a baby who is well enough lets loose crying (and will continue until the pictures are taken and the contraption is removed).  It doesn't hurt them, but it looks barbaric and they look tiny and vulnerable across the room while you wait.  The crying is hard to hear, but actually allows them to get the best pictures.  We are never sure if it is the stress, worry and fatigue that make routine things feel emotional & difficult to bare or if others would find these things challenging to face.  Even writing this, we are teary for what Henry is going through.  In the second picture, to us Henry looks like he is bravely just facing it head on...poor little guy.

The ECG took about an hour.  Fortunately for most of it Henry was sleeping. Unfortunately, some of it can be uncomfortable and so he cried for the last portion and just seemed generally overstimulated.  The ECG generally looked good.  The is an area to pay attention to, but nothing that is highly concerning at this point.

Almost all of the rest of Henry's accessories were removed over the course of today.  The following picture makes us a little sad, as Henry was poked and prodded so many times he had a sad cry and defeated look as if to ask us, "Can you please just get them to leave me alone now?"  Though this may be disturbing to look at, as his scar looks bloody, his healing is amazing and his scar only 3 days post-op looks better than it did following his first surgery.  They tell us he is an amazing healer.  I think babies have an amazing capacity in this department.

On a lighter note, Henry enjoyed a little snuggle time and TV with one of his brothers today (Owen looks like a bruiser in this shot, but actually is still about 200 grams smaller than Henry).

We are lucky that our good friend, Lisa Gardner, is a nurse manager where Henry is now....both he and Owen get a little extra TLC from her.

Henry also had a visitor today.  Our good friend, Natasja, who took care of Magnus for several days came by. Yesterday Rex came by to check on him too. It was nice to see him.

Special thanks to Ione and Rick Hooper for giving Magnus love and attention today at RMH. We think our busy little guy gave them a pretty good workout. :)

addendum

We missed an important part of our post in the last note.  Special thanks to Ione Hooper for coming to Ronald McDonald House yesterday to provide Magnus with a fun-filled day.  Also thank you for re-organizig your schedule (and Rick's) to help us again today.  We sure appreciate it.

Progress continues

Yesterday, Henry continued to progress very well.  He is breathing well on his own and his lungs are gradually re-expanding.  They remain a bit 'wet' and crackly, but this is expected and is clearing as he coughs and with the diuretic drugs they are giving him.  Here's a shot of nurses Megan and Michelle changing dressings and removing lines some of the lines yesterday.  With each 'accessory' Henry loses, he seems a little more comfortable.  Megan (left) also worked with us in July when we were here. She, like so many others here, is brimming with talent and personality.

Here is a sampling of some of the 'accessories' Henry ditched yesterday (mediastinal chest drain, right IJ line, foley catheter, high flow oxygen).

The change in Henry's appearance with then without all these accessories..

Henry still looks quite puffy, especially on his chest wall and around his eyes. This is gradually diminishing as he recovers from the surgery.  He is waking up more and more (again, a balance, as they need to make sure he isn't too active and pulling at lines and tubes).

One of the challenges with Henry yesterday was that he was intermittently extremely unsettled (moaning, thrashing his arms and legs, crying and, at one point, getting a bit mad and holding his breath to the point that he had a dip in his O2 sats and needed some help to get sorted out).  This was not nice to see, but not unusual according to the Intensivist.  One of the things that seemed to work to settle him was holding or touching/talking from us.  He definitely knows we are with him.

Another progression for Henry yesterday was that he was moved out of the PICU (to make room there for a sicker baby).  He has been transferred to a regular ward (still high observation, but a step-down from where he has been).   Interestingly enough, the baby who will take his place is a little one named Amelia, whose parents we got to know during our last stay in July.  Amelia has a different heart condition than Henry, but had the same initial surgery as he did and within days of his surgery.  It was a large dose of perspective to hear that Amelia has spent only 2 days at home since her 1st surgery and the rest of the time in hospital battling complications. We cheer very hard for Amelia to get well soon and really want to support her family too.

When Henry had his surgery in July, there were 2 other families (in addition to Amelia's) that we really connected with.  It is amazing to see how the universe works, as we have managed to see all three families on this trip... by coincidence, one was back for some follow up and staying at RMH and another just happened to be at the hospital for an appointment.  One family with a little boy named Scout had had a rough go back in July.  They watched us come and go from RMH and spent 55 days waiting for their little guy to get well enough to return home......but he did and he has done great. Such good news. The other little guy was named Mason.  Like Amelia, he had a different heart issue than Henry but had the same surgery as him. When we were discharged back to Calgary, Mason's family were expecting him to be sent home to following day.  Yesterday we learned that within hours of us leaving, Mason developed an infection in his incision...within hours it was through his whole chest. He was taken back to the OR multiple times and had to have significant portions of his sternum scraped off in efforts to get rid of the infection.  He was also very challenged because they couldn't access his vessels easily to give him the medications he needed to fight the infection... the last resort was to administer the meds directly into a line inside his heart (right atrium).....  We are happy to hear that though these families had extremely challenging times, their babies continue to fight to survive.  In all this, we have developed an even greater appreciation for Henry's progress and recovery and we feel even more thankful for the stress we have been spared... We hope these other babies will continue to progress and recover.