Waiting for surgery...

In case you missed the update a few weeks ago, James' surgery got bumped to next week. The new date is July 14.

In the meantime, we're enjoying some family time at home, taking James to the park, getting his new room set up, and having lots of cuddles. He is reading books a lot and singing to himself frequently. He loves to snuggle with his blanket on his very own couch.

Elise is about to hit her own mini milestone: she'll be 6 months old on the same day that James heads to the hospital.

3 years old!

James turned 3 last week, and we had a small celebration with ice cream cake and gifts. The cake was for our enjoyment, of course, because he doesn't like cake or ice cream. He got some great gifts though, which he already is tearing into and mastering new skills:

- Spelling: he got a set of books with an electronic read-along pad that has prerecorded words and spelling activities. By the next day he had already figured out the spelling portion, and not just learned but memorized several words. He can spell sun, moon, art, baby, dog, cat, and cow without even a prompt now!

- Music: Between his new piano and his triangle (plus other instruments, but those are the favorites) his room has been emanating a constant cacophony of noise. He loves it. Fortunately Elise is a deep sleeper.

- Books: The flip flop flaps and alliterative silly sounds of his new pop-up book have him tackling some tough pronunciation like a champ!

- Stickers: These have already been plastered all over his face.

- Food: This is more of a birthday gift to us, but he's been enjoying cocoa puffs and spaghetti lately, even to the point that he will walk to his chair, sit down, and request them. Quantities are small, but requesting food is always a big moment for this kid.

- Baby toys: wait, oops, these aren't his. But the new apartment means they're out on display for Elise, so he is thrilled to rediscover old loves.

Baby nostalgia aside, reading and spelling are fun activities for him lately, and he chooses those all on his own so we are thrilled he is so enamored with learning to read. And thank you to everyone who helped him celebrate!

Some video of James lately:

Cath is done, plus a schedule change

Loooong day yesterday! Finally I have a chance to share an update: James went in for his cath in the morning and was pretty cheerful during the prep. He even got in a nice nap on my lap while we waited for his turn to come. He had some cute little tiger scrubs to wear.

The cath was meant to be diagnostic - take a look and see if there are any complications to consider. However, if complications are found, the cath can also be a way to immediately address them. Long story short, they did find a complication (a vein dumping blood into his heart when it shouldn't) so they took the opportunity to plug it up yesterday and have it fixed before the surgery. This meant James had to stay in the ICU overnight, so Peter stayed with him and they are prepping to go home sometime today.

James did great though with recovery so far. He was in the ICU around 4pm, waking up from anesthesia, and within an hour had his eyes open and was asking for water. We're so thrilled that he can communicate now, and despite the trials of the day, he reached right for his words to tell us what he needed. By dinnertime he was alert, only minimally cranky, and playing with the iPad.

He's waiting for the results of his echo this morning, and will be discharged and resting at home before long now :)

Oh, and about that schedule change: new date for the Fontan surgery is July 14. Several more urgent cases need to be dealt with first, so James got bumped back a week.

busy week

We are moving! James goes into the hospital on Thursday for the pre-surgery cardiac catheterization, and we are bookending that day with lots of moving. On Friday, when he returns home and recovers (he'll be groggy and swollen) he'll be hanging out in his new bedroom.

I think this surgery means we will finally cave and buy him some sort of iPad. He loves preschool apps, and the recovery period - both in the ICU and at home afterwards - will keep him stuck in bed for awhile, which will be very hard on him. He likes to play alphabet and spelling games in the iPad, so he actually is learning a lot from his technology addiction.

Elise is 5 months old now, and she and James are starting to play together, in small ways. She is becoming more interested in grabbing onto toys and exploring them, so James will put his toys in her hands. Also, she normally wants a lot of attention specifically from me (because food), but recently it's been making her happy to hang out with James and watch him play.

Surgery #3 on the calendar

The possibility of a surgery this summer has been bouncing around for some time now, but it is now a confirmed plan and we have a set of dates. James will have the Fontan heart surgery on July 7. Leading up to that, he'll be in the hospital on June 16 and June 18 for pre-op bloodwork, consults, and a catheterization, plus another day of prep tentatively scheduled on his birthday...

The Fontan on July 7 is part 2 of the Glenn procedure he had in 2013. His Inferior Vena Cava (which carries blood returning from the lower body) will be redirected to flow directly to the lungs, bypassing his heart. The Glenn procedure previously connected the Superior Vena Cava to the lungs in the same way. The goal is to reduce the amount of work his heart has to do - it will only need to pump blood out, but not back in again. Once the Fontan is complete, his oxygen levels are expected to rise to over 90%, a big increase from his usual 80%.

The catheterization on June 18 is an inpatient procedure to test and visualize exactly how his heart is functioning. This will help his doctors prepare for the surgery. It's not very risky but it is an invasive procedure so this will keep James out of school for a couple days and we'll be hanging out at the hospital hoping for no complications.

Our old surgeon has relocated, so our new surgeon is Dr. Paul Chai. We're sticking with the hospital and team we know, so James will be back at New York Presbyterian/Weill Cornell in Manhattan for both the catheterization and the surgery. He'll need 1-2 weeks in the hospital to recover after the Fontan, followed by about 6 weeks of at-home recovery.

We'll post updates here as he goes through this summer obstacle course. Prayers and well wishes are always welcome.

Heart Hero Cape

This is a month old now, because I never got around to posting it, but James received a special superhero cape made just for him! This charity, Heart Heroes, makes customized capes for children with heart defects as a way to recognize the tough stuff they go through and make them feel special. James has a yellow cape (his favorite color) with a big "J" on the back.

Heart Heroes also takes donations to keep providing new capes. It's a small thing that doesn't really help in any tangible way, but is an emotional booster for the child. I requested one in hopes that it would come before his summer surgery, and it came really fast so James gets to twirl around in his superhero cape as we tell him how super he is.

when James is unhappy...

As the Fontan surgery approaches, I've been struggling a bit more with what it takes to raise a CHD child. When we first heard James' diagnosis, we decided we'd give him the best life we could and make sure he was happy, and that would be enough. No matter what his future held, I made peace with the uncertainty by focusing on giving him happiness and love to make it all worthwhile. It's a promise that I find myself breaking...

We knew we couldn't predict what complications he might encounter, and while he's done wonderfully in most areas, the feeding is a serious issue. As long as he refuses to eat, and throws up what little we do get in him, we have to continue the feeding tube. He hates the tube, and keeps throwing up violently enough that it pushes the tube out. He vomits daily, sometimes more, and the tube has had to be replaced almost daily as well because of how often it comes out. We gave him more frequent and longer breaks as the vomiting accelerated, but now his doctors have given me a stern reminder that his low weight will negatively impact the surgery. Pick up the pace, they say.

He needs to gain, and in order to gain he needs to eat.

Yet forcing him to eat makes him cry. Throwing up makes him cry. Placing the ng tube makes him cry. Going to the doctor for frequent checkups makes him cry. Something hurts, and he can't tell us what or why, and no tests or dietary changes have brought us any answers, and so on we go for the remaining weeks pumping him full of formula and watching him scream and sob as his body tosses it back out again.

I wish I could just make him happy and let him enjoy his days, but instead I'm pushing him toward things that make him miserable.

Please please please let's hope that the surgery gives him a boost in energy and he starts feeling hungry on his own.