It takes a village to raise a child - never more true than for our family. Thank you for being our village and sending positive vibes - especially for Henry in his Cardiac challenges.
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:
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!!
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.
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.
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.
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.
Another major hurdle passed this afternoon. The surgical team came to the PICU late this morning and closed Henry's sternum. We expected it to take approximately 1 hour (although just 20 minutes for the actual surgical portion). They put about 30 signs outside the PICU stating that it is closed for a procedure. Essentially Henry's bedside was a mini OR. The surgeon gave us the risks associated with the procedure, with the 2 main ones being - he doesn't tolerate the increased pressure on his heart during the attempt to close so they would have to abandon mission and leave him open or that he would not tolerate the pressure in the hours after the closure and they would have to go back in to open him up again. The surgeon said both were unlikely, but again, you only know this to be true with the passage of time.
For parents who may be going through this, one thing to prepare for (not sure how you can) is the roller coaster of emotions each time there is a procedure or something to pose increased risk to your baby or child. Today and also on the OR day, we knew the amount of time they expected for each procedure. Both times, and for reasons NOT related to complications, the time came and went when we expected to see the surgeon - both times, we were over an hour longer than expected. We were initially able to talk ourselves off the ledge -- they were just delayed starting, or maybe they forgot to give us the update..... then you start looking for the surgeon or someone you recognize as related to the procedure team as a sign they are finished... then you start to feel adrenaline and a bit of panic at the thought that something might be wrong.. If you are me, you sometimes really take leaps into the realm of fear -- is that a social worker or priest coming to give us bad news? Certainly not productive, but perhaps if you know there are lots and lots of reasons that things take longer - other than complications - it might help stave off those panicked feelings.
In any case, we are happy to report that chest closure for Henry went well. The next hours will tell if he tolerates it, which hopefully he will. From here, our next milestone will be weaning the ventillatory support (ie- gradually cutting down his breathing support until they can take his breathing tube out - this is the one taped in his nose and the reason why most of his face is covered in white tape). They will likely start attempting the weaning in the next 24-48 hours. We will also be looking, soon, to transfer back down the hall to the NICU.
Thanks again for all your support everyone. More updates later.
This will help our friends and family understand what's going on with Henry and hopefully help families facing something like this on their road toward and beyond such a surgery.
Although Henry has been occasionally opening his eyes for the past day or so when we talk to him, today he opened his eyes and looked around for us, much more aware and with some level of alertness. He remains on strong pain medications, including morphine, but will start to wake up more and more.
A final few pictures for today to show the difference of a few hours... In the morning (photo on the left), Henry was quite swollen. In the afternoon (photo on the right) after significant amounts of Lasix, Henry looked much more like himself (...and his brothers).
Staying at Ronald MacDonald House has been a learning experience on many levels... It has been a lesson on how to manage an active 17-month old and a 6-week old through the night hours.....when you are in a single open room and want one to wake on a 3-hour interval and the other not to wake at all!! We are working it out pretty well. There are lots of lounging areas, a TV and laundry room on each level, so it is possible to get the noisy, ready-to-eat baby out before he wakes the other...
Another thing we are getting at RMH is a giant dose of perspective... Henry has a fixable heart problem. We wish he didn't have to go through this, but in another way, it now feels like we need to count our blessings... we suddenly feel almost 'lucky' that the heart problem is all he has... We met a family who have spent 8 months at RMH, whose 9-month old was the 5th patient (in Canada I believe) to have a 5-organ transplant (that's not a typo - 5 organs)... or the cute, outgoing little 5-year old girl with leukemia who told us, "If I grow up, I want to have red hair" .... "if" I grow up? Chokes me up even thinking about it.... Or the father who spoke to Hal last night at dinner about the decision facing he and his wife...whether to continue supporting the life of their daughter who has minimal prospects for any quality of life due to her numerous medical complications... Henry has been given an amazing chance and that is a lot more than many kids get unfortunately... On the note of RMH, thank you so much for those of you supporting this cause by donating to Kim's fundraising for the marathon. Please know that it is making a huge difference in our lives and cleary in the lives of many other families.
Although we have had unspeakable stress over the past several days, another thing RMH is great for is providing great play space and entertainment for kids...well, also areas for snack time....which a less stressed member of our family really seems to enjoy :) As you will see, he also enjoys mornings with his Daddy.
Another member or our family is also not so stressed...Owen shown here enjoying his mommy cuddle.
Below is a picture of Henry yesterday. He remains quite puffy, but this will start to improve with the diuretics they give him. Dr. Ross thought he would close Henry's chest this morning, but they are going to delay it by a day -- he has a little fluid on one of his lungs (common in this post-surgical setting) and they would like that to improve before closing him. We are encouraged to talk to Henry and touch him (away from any of the dressings and areas with tubes/drains). He knows we are here -- he opens his eyes often when Hal or I touch and talk to him. They put in an NG tube (for feeding) this morning and will pass it to an area beyond the stomach - this will allow them to provide him with EBM (expressed breast milk) with a lower risk of regurgitation (ie- coming back up)... which would pose additional problems/concerns.
It's amazing the difference a day makes. Two days ago, we sat with Dr. Ross to discuss the surgery and the risks Henry was facing. The most terrifying of these was a 5-8% chance that Henry wouldn't survive surgery. To some, those odds likely sound pretty good (and we did try to see them that way), however, we have been on the wrong side of the stats too many times.... You know you can be that small percentage. Dr. Ross shared with us that years ago, babies with Henry's heart problems (100% of them) did not survive - there wasn't a treatment option. Results have improved over time and at this centre are among the best in North America. We are lucky that Henry is in such good hands.
We will be including pictures in this blog that may be hard to look at for some.... certainly for us they can be. However, one thing we are hoping to come of this record of our journey is to help other families. It can help when you have an idea what to expect. We were shown pictures of babies that were 3-4x Henry's size/age and who had associated syndromes... good information that we very much appreciated, but very different from what we are facing.
Here is the team bringing Henry out of the OR.... You can't imagine our relief to see him. I could see one of the anaesthetists smiling from this far away and just knew he had done well. She stopped the team as they reached us and encouraged us to welcome Henry back and give him kisses.
Here is Henry's station in the pediatric ICU. This is a unit with highly specialized training of their staff to deal with post-surgical kids. Henry will be here until he meets a few milestones and then will go back to the NICU just up the hall.
There are about 20 machines that monitor pressure in Henry's heart, in his veins, deliver medications to keep him painfree and to help him breath if he needs it. There's a warmer so he stays nice and warm despite having all his clothes off so they can watch him closely and have easy access to any tubes and wires they need to work on.
This picture is one of the things we had to most prepare ourselves for. The tape on Henry's chest says "Chest Open". There are signs above his bed that say skin closed, chest open. This is because Henry is small and because they were operating in such a small space and in a significant way, there is swelling - it needs somewhere to go and if they were to close the sternum, the swelling would squeeze the heart and make it hard, if not impossible, to pump. You can see his little heart beating when you look at the skin. It makes him seem even more vulnerable and I must admit that though I am not typically a fainter and though I knew to expect this, I felt like I just might faint when it was the reality in front of me. They will leave Henry's chest open for around 3 days (on a happy note, Dr. Ross came in this morning and said he was considering doing it today because Henry is doing so well...however, it is likely they will wait until tomorrow just to be safe). The procedure to close the chest will happen right at Henry's station in the PICU. It happens much the same way they do it with adults - with wires the hold things together to heal.
Henry and Owen this morning.... A little brotherly bonding session :) Magnus had a few snuggles with Owen this morning too. He is finally starting to learn "gentle". Dr. Ross came in to see us first thing today and said Henry had as good a night as possible after the type of surgery he had. The first twelve hours are most critical and highest risk and he has passed those. His bleeding has stopped and they are happy with how he is progressing. They will have to watch to make sure the bleeding doesn't start again. Henry's heart rate is a little high (mid-170's), but they are not hugely concerned about that. He has more swelling today as you will see in the picture below. This, too, is expected and they will give medications over the coming days to allow him to get rid of this. Obviously Henry has a lot more recovering to do, but we are relieved more than we can say that his first major obstacles are behind us.
I will close here for now, but thank every one of you who have sent us positive thoughts, vibes, prayers or whatever method of support. It all helps and we feel more than a little lucky to be surrounded by people like you. Henry, Owen, and Magnus are very lucky to be raised in a community of people like you. More soon.
Here is Dr. Ross, Henry's cardiac surgeon with Henry in the pediatric ICU just a few hours after completion of the operation. I can't imagine how great he must feel to know he saves the lives of babies like Henry every day. We feel so lucky to have such a skilled surgeon on our team.
Dr. Ross, the cardiac surgeon, just came out of the OR to let us know Henry came through the surgery well. - no surprises. In this context, that is very good news. Henry's oxygen saturations and blood pressure are good and his heart has good squeeze. They had some issues with bleeding, but things seem to have stabilized with medications, so if that starts up again, Dr. Ross says the meds should work well again. Henry should be coming past us in the waiting area in the next 30 minutes or so.
We are receiving all your messages of support and they all help. This is the scariest thing either Hal or I have ever faced and it helps to know there is an army of support behind us. For that, we thank you very much.
As many of you know, we were blessed on June 10 with our twin boys'
arrival. Magnus was delighted to be a big brother at a mere 15 months.
The boys came early at 34 weeks, 2 days.
Henry Roy Kuntze came at 5:52 pm weighing 4 lbs. 14 oz &
Owen Harold Kuntze came at 5:53 pm weighing at 3 lbs. 12 oz.
After just over 5 weeks in the NICU, Owen was able to come home on
Saturday night. The boys began their life at Foothills NICU and had
recently been moved to the brand new ACH NICU. Owen was their very
first patient to be admitted, and Henry was second. Owen was also the
very first patient to be discharged, now about 5 lbs.
We have known since February 23rd that Henry's journey would be a
different one. Henry has a major heart problem. It is a complicated
heart issue with multiple issues that require comprehensive surgeries
- several surgeries in fact. On Wednesday, Henry was airlifted to the
Stollery Childrens hospital in Edmonton. Stollery is the western
centre for pediatric cardiac surgeries.
Tomorrow ( Friday July 22 ) at 7:00 am Henry will be operated on for
the first of his surgeries. It is a big surgery. Needless to say we
are very worried, and very sad that Henry must begin his life this
way. We are optimistic regarding his long term prognosis, and pray for the
best for him tomorrow. The surgeons are skilled, the nurses are caring
and the staff are all extremely supportive and loving. We have now
interacted with literally hundreds of medical professionals all
looking after Henry. We are lucky to have this level of professional
support, as well as extremely blessed to have friends and family that
support us in the way you/they all have and will.
We chose not to share this information immediately with all, as it was
simply to hard to discuss Henry's Heart defect all the time. We hope
you all understand and that you will support him, especially tomorrow,
in his time of need.
We are spread extremely thin with Magnus at 16 months, Owen as a
newborn, and Henry. We have no time to hesitate, and we are all hands
on deck. In that, please understand that we are not able to respond to
calls and email.
We set up this blog to help us communicate to all of you who are supporting us.
Please forward this link to mutual friends, as we have likely missed
many that will be eager to send Henry their positive energy. If you
would like, updates will be sent to you as they come via making this a
choice on the blog site. We have no way to know how often we will
update, as our priorities are clearly with the boys right now.
On the eve of Henry's surgery, we pray for a good day tomorrow, with
skilled hands for our surgeon, and caring hands for all others, but
above all else, strength for our little Henry. We love all our boys so much and feel lucky that so many of you do as well.
Magnus - 16 months
