Christopher's heart

Five months later

Wow!  Time flies when you're having fun.  I hope anyone who was checking here was living by the adage of "no news is good news."  Truthfully, I haven't posted because we have been too busy enjoying life as a family.

Christopher is 10 months old and doing great.  He had a cardiology checkup 2 weeks ago and things look great.  The spot that was dilated during the cardiac catheterization back in November seems to be growing with him - or at least not narrowing.  His blood pressure is excellent.  And he's certainly growing!  He a big boy - 75th percentile for height, 90th for weight, and off the charts for head size.  (Big brain in there!)  We are gradually spacing out our visits to the cardiologist.  We got the longest leash yet after our most recent visit: 3 months until we go back.  

In terms of development, we are still seeing the physiotherapist regularly to help with motor development.  Christopher took his first steps at 9 months old and would love to be walking by now.  Ironically, though, we are discouraging this.  He isn't crawling yet and hates being on his tummy.  Crawling is the single best way to encourage symmetrical motor development and because of the stroke, that's very important for him.  We hadn't noticed any asymmetry between his limbs until he started trying to walk - but now we can see a limp on his left side.  The therapist's hope is that crawling will help strengthen all of his limbs and his core so that when he walks later, the asymmetrical gait will be less pronounced.  The problem with letting him walk now is that every time he walks with that limb, it reinforces the pathway in his brain that says, "this is normal walking."  So, we spend a lot of time cajoling him into getting onto his hands and knees, and trying to help him crawl.  He is very slowly making some progress, but I know it's frustrating for him at times.  He so WANTS to walk!

He is a smiley, happy, social baby who loves to babble.  Katie is his favourite person in the world, hands down.  He thinks she's absolutely hilarious.  He delights in being startled - he thinks it's hilarious if we jump out from behind something and scare him.  And he thinks it's really funny if we copy his movements.  Sometimes when he is done his supper and wants down from his highchair, he'll wave his arms around and yell.  One of us copied him one night and he thought it was SO FUNNY.  There are nights where he does that and the three of us mimic him for ages, all of us laughing our heads off.  Christopher has the most wonderfully contagious giggle, deep from his belly, that makes us all laugh.  It's ridiculous and yet...these are the moments we treasure.

Christopher started swimming lessons 2 weeks ago (it's a parent and tot class) - and so far he seems to have mixed opinions.  As long as the water is really warm, he enjoys it, but when it was a little cooler (last lesson), he just cried the whole time.  He does NOT like being cold.

Brad and I are doing well.  Life is very busy, as we are both working full time and of course the kids keep us busy.  But we're very happy.  I have struggled in recent months to deal with some of the memories of the most difficult times around Christopher's illness, but I have sought out some great support and am gradually doing better.  I think I'm realizing that these will always be difficult memories, but I will always treasure them too, because those difficult times gave us our beautiful, healthy boy.  And the tough stuff makes you appreciate the good stuff even more.

Christopher turns 1 on June 9.  To celebrate, on June 10, our family is going to participate in the Walk for Miracles to support CHEO.  We can't think of a better way to celebrate the past year.  If you are interested in making a donation to CHEO in the name of Team Christopher's Heart, you can find the page here.  Also, we are hoping to have a big group of Christopher's friends and family for the day of the walk, so if you're able to walk with us, please join our team on the website.  (There will be birthday cake afterwards!)

I'll end with a few photos:

From our family vacation to Jamaica in February.

 

Three of my favourite guys: Christopher and the two gifted surgeons who fixed his heart.  
I don't think I can adequately express how special these men are to our family.

Christopher's cardiologist weighs in

Just a little update from yesterday: Christopher's usual cardiologist called this afternoon.  He was unexpectedly away while we were at CHEO, so we didn't get to see him then.  However, he kindly called this afternoon to review the results of the echo they did yesterday before sending us home.  

The narrowed spot is significantly improved.  He said it still "looks a little small," but he thinks it will keep growing with Christopher so that the slightly narrowing will remain manageable.  He said a number of times that he is "really pleased" with the results of the cath and dilatation.  It's really a judgement call how far to push it in terms of continuing to try to stretch a narrowed spot, and he seemed to think that the doctor who did the procedure made exactly the right decision.  As he repeatedly said, "the enemy of good is perfect," and thankfully the procedure was stopped at the point where a good benefit was obtained without doing any harm.  

He was so pleased about all of this, it was touching.  He kept mentioning how happy he was that things went so smoothly.  I hung up the phone feeling joyful - because his enthusiasm was contagious, and knowing how happy he is with the result is far more reassuring to me than any measurement or test result could ever be!  He is the expert, he knows Christopher well, and he's been with us every step of this journey, from the very first night in the emergency department.  If he truly feels that things are looking good, that makes me feel great!

Cardiac catheterization

Christopher's cardiac catheterization was yesterday.  We arrived at the hospital bright and early (7:30 a.m.) and he was checked in and changed into pink striped hospital pyjamas.  Then we did a fair bit of waiting around until just before 9:00, when the anesthesiologist and the anesthesia resident showed up to escort us to the cath lab.  We handed Christopher off at the door of the room and as the door was swinging closed, we heard a chorus of female voices cooing at him -- the two nurses, the cardiologist who did the procedure, and the cardiology fellow all know him and seemed quite happy to see him!

We were shown to the same waiting room where we waited during his two surgeries.  It was a bit tough to sit in that room again.  I think we both felt our anxiety mounting as soon as we walked in.  However, we had both brought lots of reading material to distract ourselves.  They had told us that the procedure would take 3 hours but they were done in about 2 1/2 hours.  The cardiologist came to talk to us afterwards.  She told us that there were actually two adjacent areas of narrowing ("re-coarctation") right at the site of his original surgery.  The artery which feeds his left arm branches off the aorta right around there and due to the narrowing, the flow to his arm was so reduced that the cardiologist didn't initially realize that the branching vessel was actually that artery: it just looked too tiny.  So it's pretty amazing that his arm is functioning so well and growing normally, given that it doesn't seem to have been receiving normal blood flow for the last little while.  Fortunately they were able to improve the flow there so the arm is getting much more blood flow now.

They used a tiny balloon on the end of the catheter to dilate the narrowed areas as were able to reduce the gradient (the difference in pressures across the narrowed spot) to negligible levels.  Of course the measurements were taken immediately after the dilatation, while he was still under anesthetic, so she warned us that the end result might not be quite as good as that.  

They also had a look at the area of the patch on his aorta and they said the flow looks great through there.  The puckered area has flattened out and blood is flowing nicely.

The cardiologist told us that she can't say for sure whether he will need another catheter in the future to dilate the narrowed spot again.  She said, "maybe he will and maybe he won't."  It depends a lot on whether that area grows with him or stays how it is right now.  

After the procedure, he was taken to the Recovery Room and we got to go see him fairly soon afterwards.  He was still pretty dopey and really fussy, much as he was after the anesthetic for his cardiac MRI a couple of months ago.  However, he had a really kind nurse who helped us to settle him and he quickly woke up and starting acting like his normal self -- which is to say that he started eating and was much happier after that!

I think I mentioned before that one of the risks with a cardiac cath is of a clot forming in the femoral artery, which is the spot in the groin where the catheter goes into the body.  They were initially worried that he had a clot because the pulse in his left leg was very weak.  However, that settled down within the first hour and the blood flow to both his legs remained good throughout the rest of the time in the hospital.  They think the reduced pulse at first was because the artery was spasming from being irritated by the catheter.

Christopher and I stayed overnight at the hospital.  We were on 5-East, which is the ward where he stayed following his PICU stays after both surgeries.  We got to see a bunch of the great nurses that took care of him during the summer.  They were all thrilled to see how much he's grown and how well he is doing.  

We had a pretty good night - the usual inpatient sleep pattern, which is that you finally get the baby to sleep when it's time to check his blood pressure again!  However, we both managed to get a few hours of sleep.

Christopher had an echocardiogram this morning to check on things.  We got a basic report from the cardiology fellow, who told us that things look 'good' and the gradient across that narrowed spot has been reduced by a little more than half.  Apparently the goal with dilatations is to get the difference in pressures down by half, so that's considered a good result.  There is, however, still some gradient (more than the negligible numbers they got initially), and we're not clear on whether that was to be expected, nor about what the next steps will be.  My guess is that we'll be back to doing regular echos to watch that spot while he grows, but we'll know better when we get to talk to Christopher's regular cardiologist in the next week or so.  (He was away the past two days so we didn't get a chance to see him while we were there.)

We got home this afternoon.  When we went to pick up Katie at her baby-sitter's, she ran to see Christopher and asked him (in this sweet high-pitched voice that she uses with him), "Chrissifer, how's your heart feelin'?"  It was pretty sweet.

Thanks to everyone, far and wide, for your prayers and positive thoughts this week.  We are so grateful.

Right before the procedure: it was naptime and he fell asleep on Daddy's lap.

Right after he woke up, in the Recovery Room.  Still looking a little sleepy.

 

And a few more, from earlier this week:

 

Neurology appointment

I took Christopher for his follow-up appointment with his neurologist today.  I'm happy to report that it went really well!   The neurologist was very pleased with his progress.  He agrees that there's no sign of any deficit at the moment, which is great news.

He told me that Christopher's brain MRI was reviewed in neuroradiology rounds at CHEO.  'Rounds' is a word that can mean different things in the medical world - both the process of going around the hospital to see each patient under a particular team's care, and also a meeting where people with a common professional interest or role meet to review interesting cases.  So in this case, the rounds would be radiologists and neurologists who get together to look over and discuss brain imaging that is unusual or difficult to interpret.  The reason Christopher's MRI is interesting is that his stroke is in a bit of an unusual location and there is some debate of which artery was blocked by the clot that caused the stroke.  (very distal ACA vs. very distal MCA, for the medical readers out there...interesting because the stroke is quite posterior.)  At any rate, the neurologist says that it's "mostly of academic interest" because it won't really change his prognosis, but it's always nice to remember that many people who we've never met have still contributed to his care.

In terms of Christopher's prognosis, the neurologist said today that his motor development on his left side will still have to be closely monitored.  Apparently the location of the stroke suggests that his leg may be involved, so they'll be watching closely as he learns to walk, and of course the physiotherapist will keep working with him and monitoring.  Also, he is at an increased risk of seizures, basically for the rest of his life.  This is particularly an issue if and when he gets sick and has a fever.  And since seizures don't always look like the image from the media, where someone is lying on the ground and shaking all over, we'll have to be sure that anyone who cares for Christopher knows what to look for.  Hopefully it will never be an issue - but at least we know what to watch out for.

The best part of today's appointment was when the neurologist said this: "I think it's likely that he will have no cognitive sequelae from this."  In other words, he thinks it's likely that Christopher's intelligence and ability to learn were not affected by the stroke.  Of course, no one can say for sure at this point, but such a strong endorsement gives us a lot of hope!  

We go back to see the neurologist when Christopher is a year old, or sooner if there are any concerns.  It was nice to have an appointment that full of good news!

On the cardiac front, the cardiac catheterization and dilatation is booked for November 16th.  Christopher and I will spend the night in the hospital that night and will hopefully be home on the 17th.  Please send good thoughts and prayers his way next week.

Catheter is booked

We were at CHEO on Tuesday to see Christopher's cardiologist.  His blood pressures are, as expected, still quite different between his two arms, but there was no change in the readings from his previous appointment.  This is good news, because it suggests that the narrowed spot on his aorta isn't getting worse.

His cardiac catheterization is booked for November 16th.  We have to go in the day before so he can have bloodwork done, see the anesthesiologist, and of course be checked by his cardiologist.  Then we go in the following morning for the procedure.  He (and I) will stay overnight that night and as long as all goes well, we should be home the next day.  It seems that the biggest risk is of a clot forming in his femoral artery, which is the one in his groin where they will feed the catheter in.  That could occlude blood flow to his leg, so they'll be watching his legs very carefully after the procedure.  If a clot does form, they will treat it with blood thinners.

The important things that we are watching for between now and the 16th are diaper rash and infections.  If he has a diaper rash on the day of the procedure, it will be postponed, because the catheter goes into his artery right in the diaper area.  Any skin infection could be introduced into the bloodstream.  Thankfully, he's not a particularly rashy kid, but I am going to be hypervigilant about his diapers for the next couple of weeks!

Also, we're really trying to keep him from picking up a cold in the next couple of weeks.  Any infection could make the anesthetic unsafe and therefore would also result in postponement of the procedure.  It's a tricky thing at this time of year to avoid colds, so we've been spending a lot of time at home, unfortunately.  But it's definitely worth it to make sure that the procedure can go ahead as planned.

We also had an appointment with Christopher's new physiotherapist on Monday of this week.  She was very pleased with his development and says that she can't see any difference between his two sides in terms of motor development right now!  Hooray!  She used a very detailed rating scale to look at his development and he scored at the 50th percentile for his age.  That means he is perfectly average compared to other babies his age who have no medical problems.  Pretty great news.  He also had his eyes checked last week and the optometrist thinks that his visual fields are okay.  We're thrilled about all of this.  

Here's a fun photo from Hallowe'en, of our little family garden: a pumpkin and a sunflower.

And a happy boy:

Re-coarctation

Christopher had his echocardiogram today, under sedation so they could get more accurate pictures.  The sedation went fairly well and they were able to get some nice pictures.  The results aren't what we were hoping for, though: there is indeed new narrowing at the site of his original surgery.  The narrowing is obstructing blood flow AGAIN, causing a difference between the blood pressures in his two arms, and ultimately, it is going to need intervention.  Christopher is pretty much going down in the history books now for the series of complications that he has had.  Not the kind of records that we really want him to be setting!

The good news is that this particular kind of narrowing (i.e. one surrounded by scar tissue from the original surgery) is very amenable to intervention using cardiac catheterization.  I found a great website from Sick Kids that shows the details of cardiac catheterization for re-coarctation.  Check it out. 

In Christopher's case, they will thread the catheter in through an artery in his groin.  The major complication of concern is a clot that could form at the site in his groin and affect blood flow to his leg.  For this reason, he will be kept in hospital for at least one night after the procedure, and possibly longer, to monitor the blood flow to his leg.  If he does develop a clot, they will treat it using blood thinners.

A few people have asked us whether they could use a stent to hold the area open.  The cardiologist told us today that while some centres are using stents, the issue with using them in babies is that eventually, the baby grows and the stent is too small, which causes major issues (i.e. how do you retrieve the 'outgrown' stent without doing harm?)  So, no stent for Christopher!

The plan at the moment is for the procedure to happen within the next two weeks or so.  Christopher's blood pressures are abnormal (but unchanged from last week) but his heart function is normal, which means his heart is coping fine with the extra work at the moment.  That means we do have some time and this doesn't need to be done on an emergency basis.  The cardiologist who does these procedures at CHEO is away and will be back next week, so we expect to hear early next week about when she'll be seeing us to discuss a timeline and plan.

I am exhausted and feeling a bit overwhelmed tonight.  Poor Christopher is totally out of sorts from fasting, being put to sleep, waking up disoriented, then sleeping too long as the medication wore off.  He's just not a happy camper this evening.  And his Mommy is feeling a bit out of sorts as well.  I feel like the poor little guy just can't seem to get a break.  While I have a ton of faith in his doctors and am usually able to stay positive about how things are going, just tonight it's all feeling like a bit much.  That said, I know we'll get through this, and I think the first step is for all of us to get a good night's sleep!

Just as I was typing this, I had a call from a volunteer at the Heart & Stroke Foundation.  I mentioned that our son has congenital heart disease and has had some challenges recently.  The volunteer told me his own story of cardiac disease, and then asked for our son's name and promised to pray for him.  Moments like that remind me that we are not alone, and we will get through this next hurdle just as we have the ones before.  

Re-coarctation?

Christopher had his regular cardiology follow-up appointment yesterday.  The news is a bit mixed: his heart function still looks great, and the spot where the GoreTex patch was occluding flow is continuing to improve.  But there is new narrowing in his aorta at the site of his first surgery.  This is called "re-coarctation" and I guess it's fairly common.  We're not sure yet whether it's truly narrowed or if the scar tissue there has just stayed the same size while the rest of him grew quite impressively.  (He was 17 lbs, 8 oz yesterday.)  Either way, it is blocking some of the flow out of his heart.

The result is that the blood pressures in his two arms are different again: 110 in his right and 80 in his left.  This reflects the fact that the narrowed part is between the points where the blood vessels branch off for the two arms, so his right arm is getting some backup of blood, while his left isn't getting as much as it should.  The good news is that the narrowing is mild at the moment, and his heart isn't showing any sign of strain from pumping against it.  The bad news is that it's unlikely to get better on its own and may well get worse.

So, at the moment, the plan is for another echo, to be done in the next week or two, this time under sedation.  Christopher's aorta is really tricky to see on echo, and although I'm not entirely sure why, I think it's a mix of how he's built and what the surgery did to the architecture in his chest.  Anyways, given that this echo will determine whether he requires intervention, they want the most accurate pictures possible, so he will be having it under sedation.  We really don't enjoy the sedated tests: it's a long day, it's hard on him, and it's just exhausting all around.  But if that's what it takes to get clear answers, that's what we'll do.

The cardiologist said that this can likely be managed by cardiac catheterization, where a tiny catheter is threaded up to that area (I think through an artery in his groin - at least that's how they do it in adults) and a balloon on the end of the catheter is inflated to stretch the area out.  He said it sometimes needs to be done more than once, but that approach is much safer and less invasive than more surgery, so we are hoping that if he does need intervention, a catheter will do the job!

The cardiologist will be reviewing the situation with the entire cardiology/cardiac surgery team at CHEO this Friday.  The information from that discussion, as well as the results of his sedated echo, will give us some answers about next steps.

Meanwhile, here's a photo of Christopher, his Great-Grandma, and me, taken this past weekend after his 'baptismal blessing.'  He was baptized in the hospital before his first surgery, so our church did a beautiful anointing and blessing to celebrate his health and welcome him to the community.  It was an incredibly moving day for all of us.

P.S. I wrote a blog post last week about his physio progress, but didn't get time to edit and post it.  You'll find it just below.

It's been a while

Well, no posts for a while on here, but for a good reason: life has been pretty uneventful, health-wise.  Christopher is growing like crazy and is deliciously pudgy right now.  He was just a hair under 17 pounds at his 4-month appointment.

He's also meeting his developmental milestones so far - reaching for toys, trying to roll, doing lots of cooing and vocalizing, and TONS of smiling.  He's a pretty easy baby.  He sleeps fairly well at night (with the odd exception), but doesn't nap much at all.  And he pretty much thinks someone should hold him all the time, although he will allow us to set him down for a FEW minutes at a time!

We have noticed in the past couple of weeks that there is starting to be a difference between the movement in his two arms.  While he reaches for toys with both arms, he doesn't connect as frequently with the left, which is the side that was affected by the stroke.  He also tends to hold that shoulder back when the arm is relaxed.  And as he is learning to roll, we've noticed that he only rolls toward his right side so far.

All of these things are minor, and not obvious to a casual observer.  I noticed them first, because I spend the most time with him, but they are becoming more prominent with time.  We were warned by the neurologist that this might happen.  Damage from a stroke can be come more obvious as the baby learns more complex skills and one part lags behind.  When both arms were still making random motions as newborns do, the difference was hard to detect - now it's more obvious.

We had a follow-up appointment with the physiotherapist at CHEO today and she was very encouraging.  She does see what we see, and she immediately taught me some ways to help him to use the left arm, everything from introducing toys from his left, to leaving his right arm inside the body of his shirt for a few minutes so he's forced to use his left.  We also talked a lot about exactly where the deficit is.  He seems to be able to do fairly fine movement with the hand, and the therapist is wondering if the issue is more with trunk and shoulder girdle control on the left.  This could be from the stroke, or possibly from where they made the incision for his first surgery, just under his left shoulder blade.  

The other possibility is that the issue is actually related to vision.  We were told when he had the stroke that it might be affecting a visual area.  If he is missing part of his visual field on the left, his issues with purposeful movement with that hand might actually be because he can't SEE the hand - or can't see it as well as his right. 

It's all a bit scary to contemplate.  The focus with respect to his health has shifted from the heart (which remains good, as far as well know) to the sequelae of the stroke, which we may not fully understand for years.  The really good news is that we are in a great city where help is available.  He has made it to the top of the wait list for the Children's Treatment Centre, so we'll be going there for physio from now on.  They have a more interdisciplinary approach to care, so if he needs occupational or speech therapy, psychologists' services, or social work, those will all be available to him.  We love his therapist at CHEO, and it's hard to leave her, but we know that more help is available at the Children's Treatment Centre.

We're also looking into getting his vision tested.  Reportedly the wait list for ophthalmology at CHEO is two years (!), but I will confirm that when we see his neurologist.  In the meantime, I have contacted an optometry clinic in Ottawa which sees babies, to see whether he is old enough to be assessed.  We will get him the testing he needs, however we have to make it happen.

We should also be having a follow-up with his neurologist soon.  There was a bit of a mix-up with getting the appointment booked, so we're in the process of getting that sorted out.  I stopped into the neurology department today on our way out of CHEO and was greeted by a very familiar face at the desk - but one that I absolutely couldn't place.  It turned out it was one of his amazing PICU nurses, Julia, who has moved to a new role at the neurology clinic.  I just didn't recognize her in dress clothes instead of scrubs!  Julia was there the day of his second surgery, when his heart nearly stopped, and she was very involved in the amazing care he received.  I feel like her name is forever in my heart, and I felt terrible for not recognizing her at first - but she was very understanding.  She was thrilled to see us and see how well Christopher is doing.  She told me, "I will never forget this little guy.  Ever."  Pretty touching.

So, lots going on.  Christopher's next cardiology appointment is next Tuesday, and he'll have another echo then to recheck the aorta.  

And I'm happy to report that we are celebrating his baptism this weekend.  He was already baptised in hospital on the day that he was first admitted, but I can't say it was a particularly joyous occasion.  Our church community offered to give him a special blessing as a way to formally welcome him into the community, and we happily accepted.  It took a while to find a baptismal gown large enough for our little bruiser, but a friend has offered one that is a family heirloom, so we're all set and looking forward to a great day.  Christopher's uncle is getting married this weekend, so a lot of his family members on that side will be here for the wedding and are able to join in the baptismal celebration as well.  It should be quite a weekend!

Hooray!

What a great day!  Christopher had his cardiology appointment and echocardiogram and the news is wonderful!  His aorta is improving, and his heart function has recovered.  I feel like I'm on cloud nine.

The way that they assess the degree of blockage caused by the pucker in the GoreTex patch is to measure what's called the "gradient" - basically the difference in pressures on either side of the obstruction.  They measure two numbers, the peak gradient (i.e. the highest number) and the mean.  Last time, the peak was 74 and the mean was 47.  This time, the peak was 46 and the mean was just 16!!!!!  Hooray!  Also, the wall of his ventricle was thickened last time, from working harder to pump against the obstruction, and now it looks completely normal.  

On top of all that, he has gained a pound in the past month and now weighs 15 lbs, 6 oz (7.07 kg), which is around the 86th percentile for his age.  He's also at the 78th percentile for length.  He's a big boy.

He also hasn't had any of the terrible pale spells in the past week or two.  He does look a little pale at times, but not the awful deathly, grey colour that we were seeing a month ago.  No one knows what that was or why it went away, but we're happy it's gone.

The cardiologist said today that he is "cautiously optimistic," but he was beaming when he said it.  I think everyone was a bit surprised by how much improvement there has been.  After the echo (which took an hour), they brought us into a consultation room to see the cardiologist.  He popped his head in a few minutes later and said, "I've looked at the pictures and they look so good that I want to repeat the test to be sure the numbers we have are accurate."  So he got another tech to re-do the gradients to be sure they were right - and they were!

I can finally say that I feel like a weight has been lifted off our shoulders.  Up until now, I was hopeful but still very worried that Christopher would have to have more surgery (with all the risks that brings) or would have problems with his heart in the future due to the strain of pumping against this blockage.  And now, I'm finally allowing myself to believe that he is going to be a healthy, happy little boy, who can be as active as he wants to be.  It makes me cry just to think about it.

We go back to CHEO in a month for another echo to confirm today's results (and possibly see more improvement, although the cardiologist cautioned us that it could look worse too, just because they are such tiny measurements).  In the meantime, if you're looking for me, I'll be hugging my kids and my husband - and maybe dancing in the streets with a grin on my face.

All our love and gratitude to the hundreds of people all over the world who are reading this and following along on this journey.  Whether we know you in 'real life' or not, we are tremendously thankful for your support, prayers, and love.  Our little guy is so blessed to have so many people who care for him.

The plan

Christopher ended up having his follow-up appointment at CHEO last Friday instead of yesterday, because he had another one of his pale episodes on Thursday.  I called the cardiologist and he asked us to come in sooner.  The echo done on Friday showed basically no change.  The occlusion from the patch is still there, his heart function is still slightly affected, but neither is worse (or better, for that matter.)

He is certainly growing!  He gained almost a pound in the week between his 2-month well-baby visit and his cardiology appointment!  He's up to 14 pounds, 6 ounces now.  No wonder he's growing out of all of his clothes.

They sent him home from his appointment on Friday with a Holter monitor on.  He had stickies on his chest leading to a little cell phone-sized pack which we carted around with him for 24 hours.  It recorded his heart rhythm for the entire period.  He didn't have any pale spells while it was on, but did have one a few hours after it was taken off.  The data that was collected was entirely normal, but unfortunately we don't know for sure what's happening during the pale spells.

Lots of smart people in Toronto and Ottawa put their heads together today and reviewed Christopher's case.  His cardiologist called tonight to let us know the conclusion of the discussion.  The news is pretty good.  They don't feel that it's necessary to intervene at this point to fix the occlusion.  For now, the plan is to repeat his echo once a month to see how his heart is looking.  If it starts to show signs of worsening strain, then they will likely intervene, which would mean another surgery.  If the function stays stable for the next 3 to 6 months or improves, they'll start spacing out the time between the tests.

The cardiologist says he really doesn't know what's causing the pale spells and neither does anyone else.  He says if they keep happening frequently, we could consider another Holter (for a longer period of time) but for now, we'll just wait and see.  

Overall, it's pretty good news.  We're thrilled that he doesn't need surgery.  That said, it's more uncertainty and waiting, which is tough.  I am feeling a bit overwhelmed lately by worry and uncertainty, so the thought of waiting an entire month before someone can confirm that things are okay is a bit scary.  A wise friend suggested to me recently that we should start taking Christopher to see his general pediatrician more often so that someone else can worry about all the little things and I can just be his mom, instead of worrying about the medical stuff and being "Dr. Mom" as well.  I think it's a great idea, and I am going to book an appointment for sometime in the next week or two.  And then he'll have his next echo (the fifteenth of his young life!) in mid-September.  In the meantime, we'll carry on with life!