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.

Yesterday was our monthly visit with our Friendly Neighborhood Cardiologist. Chase’s Aunt Cyanne is up for a visit, and got to experience the wonder and amazement that is our appointment. (har har.)

Like usual, Chase was stripped and hooked up to monitors. (He doesn’t mind.) He flirted shamelessly with the nurses, and was weighed in at an impressive 16.4 lbs. His numbers are still creeping down, which is to be expected. (In fact, if they weren’t it would probably be a bad thing because it would indicate that he isn’t growing well.)

Next Sunday Chase will be six months old (be still, my heart!) and our original estimate for his surgery was anywhere between six to nine months. So far, though, it’s looking like we’ll be on the far side of that estimate – Dr.C said that when a baby looks “as good as that”, there’s no reason to rush things; especially since his blood-oxygen levels haven’t yet fallen to 75, which is normally what people look for when they start talking about surgery.

So, that’s pretty much all of the news we’ve got. Dr. C also got ahold of the Big Wigs in Atlanta to set up a consultation with us and the surgeon – they called this morning and we will be going up at the beginning of April. We’ll see how that goes…

Toodles!

Hello there! Sammy here – or, more commonly known as “Chaseton’s Mom”. I want to apologize. Chaseton’s Grandpa handed this blog over to me quite a while ago, and I have failed dismally at keeping up with it. I’d like to say that this was completely accidental and that in the whirlwind of New Mommyhood things just got out of hand…but that would only be partially correct.

To be honest, I’ve been willfully ignoring this small space of internet. Please don’t be offended! I love this blog, and I love what my Dad has done with it. But it was created to serve a purpose – to keep everyone In The Loop while Chase was experiencing his first hospital stay. And for a little while, I just didn’t want to think about any of that. For a little while, I wanted to pretend that the every-day life we were living was all that there was to it, that I did not have the kind of baby that has his own blog and a medically-dedicated savings account.

And so, for the last four months or so, that’s what we’ve done. Chase has been amazing.

He is eating,

and sleeping,

and growing.

He was weaned off of his medications shortly after we arrived home, and hasn’t been taking anything since. Due to his own insatiable appetite, some amazing support, and a couple of wonderful lactation consultants, he has been eating on his own without the help of any tubes (or even any bottles.) We celebrated his first Halloween,

his first Thanksgiving,

and his first Christmas.

(And a few smaller holidays, too.) He has grown into the happiest, most easy-going baby I’ve ever met.

We hit three months,

four months,

five.

And things have been amazing.

Besides the monthly Cardiologist visits, it would have been easy to forget just what we’re in the middle of. Well, that and this:

Our pulse oximeter. We were lucky enough that our insurance covered a rental – one of the things that has allowed us to see Chase’s Cardiologist as infrequently as we do.

Now, though, things are starting to change. His “numbers”, as we refer to them (his blood-oxygen levels) are beginning to drop. We notice blue around his mouth and on his hands and feet with more frequency. Honestly, it’s alarming. But this is when I try to remind myself how lucky we are – how we’ve had these few months that many parents with Heart Babies never get. Medication-free? Eating on his own? Growing exactly on par with a “healthy” baby and meeting all of his milestones?! This child is actually in the 75% for height!

And I know how rare that is. I know how many babies are blue, constantly. And I know how lucky we have been. It is a comfort, but the honeymoon is over, and reality has started to sink back in. I find myself thinking about a Hospital Packing List on most days, and my parenting choices are made with his next visit in mind: “How can I soothe him in a way that will work in the hospital, too? Will introducing solids have any effect on his eating habits after surgery?”

And that is why I finally decided to try my hand at this whole thing. First, I re-read all of the original posts. It wasn’t easy, but I think it was necessary. Now, I’m forcing myself to look ahead. I will try to ease all of us back into this thing as slowly and positively as I can, with more regular updates about Chase and, when the time comes, our preparations. Hold on tight, folks, it’s gonna be a bumpy ride.

Chaseton’s Grandpa.

As good of a day as you can have in the hospital. Chase had a great night…all of his feedings were successful. They removed the feeding tube about an hour ago, and the good news keeps coming. Chase is sitting in his car seat as I type this. No, he is not going home today…the hospital runs a car seat test on its babies before they are discharged. The baby is loaded into his seat and gets to relax in it for an hour and a half; they closely monitor all his vitals to ensure that his seat does not put him in distress. That’s really important because his ride home tomorrow will be at least 2 hours long.

Yes Chase is going home!

Unfortunately we will have to come back in a few months for his surgery.

We were able to spend the entire day with Chase. He is doing great! I had a chance to sit down with him and have a good long talk about his future. Right now he is wavering between the NFL and NASCAR for top career choice.  He had another good meal with out using the tube. We have hopes that they will decide to remove it.

One happy Grandpa.

Chase did a really good job of keeping his parents awake all night long.  Now he is sleeping like a baby. It looks like we may have another night owl in the family.

They have increased the amount of time we can bottle feed him. So now we don’t need the feeding tube as much.

Its been a good morning

Chase is having a little trouble coordinating his breathing and eating. Its not uncommon for babies like him. They have installed a feeding tube so that Chase will not wear himself out when he is feeding. They just finished another echocardiogram to insure that his PDA has closed. If it has and he keeps improving we hope he will be moved out of CICU today or tomorrow.