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