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.

Big kid and smiling baby

I went to visit and observe James' preschool this week, and it was a lot of fun to see how he has adapted to the new setting. He was totally outgoing about playing in the kitchen area with pretend food, not engaged with the other kids but not bothered by them anymore either, and eager but shy during the music session. He loves music, but stays completely frozen and won't shake his instruments, as though he really wants to join in and just doesn't know how. He doesn't dance much either, but did a little butt wiggle that was super cute.

He insists on waiting each day to watch the school bus leave so he can say "bye bye bus".

Some pics of James' new haircut, and Elise giving her new toothless smile:

James goes to school

It's been a long time since we've posted a James update, mostly because he's been doing so well. He started a two-hour morning preschool in January and seems pretty happy to go off to school each day. He now has about 25 hours a week of therapy, a big increase that started in October, and the results have been dramatic.

In October, he only knew a few words and only said them when prompted, meaning he could repeat but not communicate of his own volition. By November, he was saying a handful of words without prompting. By December, that had increased to dozens of words - some more clear than others. He knew the colors and was getting pretty good at the alphabet. By January he was stringing words together. In February, he frequently said sentences and started counting up to twenty without prompting. He babbles all the time now, and while he might have around 100 words that we understand, he clearly is trying to say a lot more. Some favorites? "bum-bo-bay"(bumblebee), "ssi-do" (sticker), "toy tway" (toy train) and "mooey" (music).

He weighs about 25 pounds now and looks great to us. This is still too low to please his doctors though, so he has been back on the ng feeding tube since last summer. He hates it, but with another surgery coming up, it's in his best interests to grow as much as possible beforehand.

Surgery #3, the Fontan, is the last planned surgery and will hopefully repair his heart enough to last for years before any additional interventions are needed. It has been tentatively planned for this summer and will likely be scheduled in July. However, it is dependent on his weight gain so we'll update accordingly as summer approaches.

And our family is 4

We welcomed James' little sister on January 14. Elise is a beautiful and healthy little girl!

Besides these pictures, we are happy to share with our family and friends the online photo album linked in the previous post.

Baby girl Elise is here!

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