Hey guys! It has been absolutely crazy around here lately.

Chase’s cath appointment has been set for the 15th (of this month.) That’s still all we know as far as that goes; we won’t be able to get more information on what’s wrong or how they plan to fix it until they are actually in there, taking a look. In other news, though, Chase woke with a fever and lethargy Friday morning. We still aren’t sure what caused it (Strep culture came back negative, but his throat was red enough for his pediatrician to suspect it anyways.) Sometimes when it rains, it pours, huh? He’s been put on amoxicillin for the next ten days, in hopes that it will wipe out whatever he had brewing and also inoculate him until the procedure. I’m not a fan of over-medicating (especially with antibiotics) when we didn’t really know what was wrong in the first place, but unfortunately with a hospital visit just around the corner we really can’t take any chances. Better safe than sorry. 

He’s been a little trooper, though, and has been running around fever-free all weekend. (Literally. There is no shortage of energy over here!) The antibiotics have been upsetting his stomach, but we are thinking some immodium ad will help him out, and are hoping for smooth sailing until the 15th. (Fingers crossed.) As always, we’ll let everyone know as soon as we find out more.

         Have a great day, guys! 

This month, we are ten months post-Nikaidoh. (Yesterday was his ten month anniversary, actually.)

Thursday Chase had his first cardiology appointment since October of last year – 6 whole months without a visit to the office! That’s some crazy stuff, folks.

I wish I could say it went exactly as expected (“Hello! Looks great, see you again in six months!”) but that unfortunately wasn’t the case. The echo-cardiogram picked up increased pressure on the left side of Chase’s heart; it seems that his conduit is narrowing. Normally they don’t expect to see this until 5-10 years post-surgery, due to buildup or just because the body is outgrowing the bovine tissue. However, since it’s only been ten months this is pretty obviously not the case. The pressure increase is pretty drastic, and there’s just no way that scar tissue or calcium could build up fast enough to cause it. (Right after surgery, Chase’s pressure was at 7 mm. 0 mm is a “normal” heart, but 7 mm is very good for a heart with a conduit. At his next appointment pressure was at 36 mm, which was sort of a jump up but still within normal ranges. This last echo picked up pressure of 80 mm. Definitely a big jump, and definitely out of “normal” ranges.) We were told that occasionally a kink develops in the conduit, which could be what’s happening here. 

At any rate, an echo-cardiogram is not the most reliable way to measure this particular issue, so it’s been recommended that we head up to Atlanta sometime in the next couple of weeks for a catheter procedure. It would take a look at what’s going on, and say either “Oh, there’s narrowing but the echo was waaay off. No intervention needed right now!” and off we skip. Or they could say “Hmm, yup, this narrowing is severe enough that we really should just go ahead and take care of it now, since we’ve already got you here and everything.” If we’re being realistic, the chances are that we’ll hear option #2. Probably the narrowing won’t be quite as severe as 80 mm because Chase isn’t showing any of the symptoms you would expect (loss of energy and appetite, possible fainting spells, and pressure on the heart wall.) But something definitely changed enough for the echo to pick up on it, so we’re expecting some sort of intervention to happen at the appointment as well.

Of course, since we don’t know how narrow everything is or why, we really don’t know what they will do to fix it. More than likely they will either perform a balloon catheter to expand the conduit, or they will place a mesh stent in the conduit to keep it open. The good news is that these procedures are fairly in-and-out; if they place the stent they will probably keep us overnight for observation but otherwise we can expect to go home that same day. Our cardiologist also assured us that although this is not something they expect or like to see so soon after surgery, since the Nikaidoh is so new it’s not totally unexpected to encounter these sorts of “road bumps”, and he doesn’t expect it to affect the long-term outcome. 

Although hearing all of those things is reassuring, it would be a lie to say that we aren’t worried. We hate to bring Chase back to the hospital soon, and would appreciate any good vibes/prayers you guys could send our way. And of course, we will keep you updated as soon as we know more. 

          xoxo,

                     Sammy 

Yesterday marked one whole year on Earth for Chaseton. To say that we were excited is a huge understatement – the day was filled with messages, phone calls, skype sessions and facebook well-wishers who blew me away with care for Chase.

We had an amazing party with family and friends over Labor Day Weekend, and spent yesterday together as a family enjoying the official start of Fall.

Looking back on his first year is a difficult and wonderful thing. It’s always hard for me to remember the morning after his birth (one year ago today, as a matter of fact,) when his wonderful pediatrician came in, frowned, and mentioned “a murmur.”

After that, a blur of garbled medical updates as they took my fresh baby away to the nursery. A cocktail of drugs, hospital transfers, all culminating in a trip to the Children’s Hospital in Atlanta, two hours away from where I was being kept until I could recover from blood loss during his birth. I look back and wince. I look back and am filled with pride at the amazing progress Chase has made.

That any baby could go through what he (and what many, many others) go through and come out the other side a smiling, friendly child is such a source of amazement to me.

That any child could amass over one million dollars in hospital bills before his first birthday is mind-numbing. And yet, here we are. That story is his.

All I can do is look in wonder at the miracle sitting on my lap. He’s growing, (he jumped into 12-month sizes yesterday! Well played, Chase.) He’s happy (unless the strangers at the supermarket wont wave back,) and he’s filled with life and good-humor. I could not be luckier. This first year has been by turns harrowing, heartbreaking, and awe-inspiring, but it has always been worth it because, at the end of the day, I get to kiss my hero goodnight.

P.S. Check in next month for a cardiology appointment update!

First of all, I’d like to offer my apologies. We didn’t mean to leave the blog at such a bad stopping point! (As a matter of fact, with the whirlwind few days we had following that post, we didn’t even remember. Whoops!)

And so today, seven weeks post-op, I’d like to shine a little light on where we are now.

When we left you, Chase had An Episode (that’s how I refer to it in my mind.) That night, his oxygen saturation levels plummeted. It happened several times, as he began to fall asleep. Brandon and I spent a sleepless night glued to the monitors, watching with our hearts in our throat.

Luckily, after the initial scare it didn’t happen again. The general consensus was that exhaustion coupled with a cocktail of pain medications (especially Lortab) caused Chaseton to fall asleep too quickly, making him unable to regulate his breathing and causing his oxygen levels to drop. Chase spent an extra day in the Step-Down unit being observed closely by his doctors (and his great nurse, John!) before we were released on Friday – exactly one week post Nikaidoh.

From then on out, it’s been smooth sailing. (Knock on wood.) Chase was quickly weaned from his blood-pressure medicine, and then the lasiks (which prevent fluid buildup around his heart.) His post-operative xrays and echocardiagram looked great, and we are now at bi-monthly cardiology appointments. In fact, after this next one we hope to stretch the time to every six months!

He has been cleared for daycare and flag football (if only his coordination would allow it! 😉 ) and we really couldn’t be happier with his progress. He has been gaining weight and getting taller, and we hope that this manifest in his growth chart (as he is still quite small for his age.) Just as exciting, he is fast approaching his first birthday!

Which, of course, will warrant a post all of it’s own.

Until later, I thank you all for your patience waiting for this post! Happiness and good health ❤

Today began at 4:00am with a cranky baby who just wanted to eat. Unfortunately that wasn’t in the cards, and sleep was out of the question after that. We got to the hospital around 5:45 and Chase carried back to anesthesiology (totally asleep) at 7:30.

And then we waited.

And waited…

(And waited.)

We got garbled updates every hour/hour and a half, and we remained cautiously optimistic. Our final update was received around 3:30, and we got to meet his surgeon shortly afterwards. Everything went smoothly, and he considered the Nikaidoh procedure to be a success.

It is now 6:18, and we are still waiting to see our baby. He is stable (and his heart is beating on its own!) but his arterial line isn’t working so we are waiting on them to replace/repair it. Shift change begins in ten minutes, and if we don’t get to see him by then we’ll have to wait until 8:30. I may just be rambling at this point (and if so, I apologize) so I’ll leave you now and update when we know more.

As always, we are beyond grateful for your kind words, prayers, and positive vibes. They mean the world and I’m convinced they make all the difference.

Phew. Today was Chase’s May visit, and the last one before his surgery in June. We’ve been trying to make the most of this time, filling it up with family visits and mini vacations, but with barely a month left before we head to Atlanta it’s time to start preparing.

His visit today went okay. His coloring is good and we got another oxygen sats reading in the mid 80’s (which still seems a bit surreal to me, but hey – I’ll take it!) However, Chase doesn’t seem to have grown any since last month. In fact, it looks like he lost about half a pound. Although it isn’t unusual for Heart Babies to have trouble growing (their heart burns up a lot of calories just to work properly,) this is a little strange because he’s been growing so well up until this point, and nothing obvious has changed.

Dr. C isn’t overly concerned, though, because his surgery is already scheduled for next month and that will “reset” everything anyways. He thinks the best thing to do is to see what happens from there – in fact, he isn’t even calling for a follow-up appointment (like he might have if the surgery weren’t so soon.)

Other than that, everything went well. Chase has also been tentatively approved for daycare in August (two months post-op, as long as everything goes well,) which means that I should be able to attend a few classes in the Fall. Hurray! Until then, though, that To-Do list will keep us busy!

April has been a full month for us. We had some heavy moments, and some every-day-amazing ones. (Hint: the pictures are from the good ones. Hah.)

It started on the 3rd, with a Surgical Consult in Atlanta. We got to meet Chase’s surgeon, and he went over the pro’s and con’s of the two surgeries we are considering.

Pause for a little back story: there are two possible fixes for Chase’s heart. The first one, the Rastelli, has been the go-to procedure for years. It is a faster, simpler procedure with almost no mortality associated with it. There is also a lot of long-term data on Rastelli patients. The down side to this surgery: it requires several further surgeries, and I am not really loving the long-term prognosis. The second surgery, the Nikaidoh, is newer. It is a longer, more risky procedure, but it requires less surgeries in the long term. (In fact, it is possible that further procedures could be done with a catheter instead of surgery. Barring any complications, of course.) There is not as much long-term data, though. Needless to say, it’s a tough decision.

Anyways. The surgeon discussed the issue with us (although most of the information we already knew, since we haven’t been sitting idly by as far as researching goes.) He made his official recommendation: the Nikaidoh. He’s one of the more experienced surgeons in the country with this procedure…and to date, he’s only done six. We were a bit disappointed that we didn’t get anything concrete (like a time frame) especially since it’s a bit of a drive into Atlanta, but overall the consultation went well.

Then, we had Chase’s monthly cardiology visit on the 9th. Dr. C was very impressed with Chase – his saturation levels are still hanging out in the low 80’s – high 70’s (although the nurse was able to get a reading of 85 – yay!) and he is growing and gaining just like a “heart healthy” baby would. His color is great, his energy is up, and he’s overall amazing. (That last part might just be my interpretation, heh.) After we got all of the gushing out of the way, Dr. C suggested we start thinking about setting a surgery date. His reasoning was this:

• Chase is six (almost seven) months old, and his heart will not grow significantly between now and one year (which is the latest they would like to do the surgery.) Therefore, there is no real benefit to waiting.
• Chase is now healthy and happy. His recovery time would be potentially faster than if we were to wait until his health “started to go downhill”.
• Flu and RSV season is over, limiting the chance that he could catch either while in recovery.
• Right now his surgery is considered “voluntary” (as apposed to “emergency”. This surgery must happen at some point, so that part isn’t voluntary, unfortunately.) This gives us an opportunity to chose the date and prepare ourselves, as opposed to being sent up there without notice in an emergency situation.

We told him we would want the surgery to be in June, and he offered to send the notice up to Atlanta immediately. (The summer slots go quickly, as all of the school-aged children prefer not to miss school.) Luckily, Chase is doing so well that Dr. C doesn’t feel anything will change with his health to force us to go up before that.

Then, on April 16th, we heard from the scheduling team in Atlanta. We talked for a bit, they asked us what we had in mind, and we quickly decided on a date: Friday, June 14th. (It almost seemed too easy. Shouldn’t there be more to booking your child’s open heart surgery?) And so, barring any unforeseen events, we will head up to Atlanta on Wednesday, be there for prep on Thursday at 8 am, and then…Friday.

Obviously this is a lot to take in (which explains the delay on this post) but we are doing our best to stay positive, filling our time with friends and family as often as possible. Thank you so much for your continuing support, it does wonders for our state of mind.