Stella's Heart: Pre-Fontan Cardiac Cath

This ride is so crazy. And a constant reminder that we aren't in control. I know we posted on Instagram about how well Tuesday went - and it really did go so well - but we also got a little ahead of ourselves in the "no surprises" category. We tend to forget that 1). Stella is special and 2). Our road isn't up to us.

I wrote an entire blog post the night and morning after her Cath and didn't actually post it because I couldn't get pictures to load while we were still in the hospital. Since then, we have learned about a little hiccup that could effect her next surgery -and I'm being kind of cute when I use the word hiccup. It might be the chardonnay talking. But instead of wiping out that entire post and starting over, I actually want to keep it and then add the latest developments at the end. So humor me? Here we go:

I’m starting this post next to a very groggy Stella at 9pm, 9 hours after her cardiac Cath, and I’m just feeling immensely grateful. Stella was a complete rockstar today. She woke up with the best attitude, was smiling and incredibly brave in pre-op. I really can’t believe how well today went after weeks of stress and tears. We needed this day before her surgery next month.

A quick recap: Stella was the first case this morning and they took her back around 7:45 am. And if you aren’t on social media, then you didn’t see that her arrival in the Cath Lab was nothing short of BALLER. We were blasting Taylor Swift as she drove a mini bright red convertible into the Lab (Adam finds it important to point out the make of this tiny toy car was a Bugatti). Regardless, it was super cute and made the anxiety of going into an OR room melt away (for all of us). She was so brave as they prepped her and we got to stay until she fell asleep. The entire process was completely void of any anxiety and was totally unrushed. I said immediate prayers of thanks for our awesome hospital.

Stella ended up under anesthesia for a while longer than we anticipated - about 4 1/2 hours. But she did great and the cardiologist updated us the whole time. As expected, she needed some intervention while in the Cath Lab. They ballooned the stent in her LPA and coiled three big collateral vessels. See below for before and after pictures of what that looked like! It’s kind of mind blowing. The Cath Lab Cardiologist took tons of pictures and measured pressures in all her valves and other important heart things I pretend to understand like cardiac function and flow to the lungs/right ventricle.

In recovery, Stella was a champ. She had to lay still and flat for 3 hours and woke up after about 2 hours of foggy sleep. Ice cream and a kindle kept her completely content and we headed to a (private!) room just in time for some visitors. Connor, Ellie, AK and Lottie had all been waiting for hours to come say hello and were super excited to see she was awake and didn’t have any scary machines or bandages. I think having that positive image of Stella going into surgery is going to help them process and cope with the questions and emotions ALL of her tiny siblings and cousins will have!

For the rest of the day and night we just kind of hung out. Stella was punch drunk until about 10pm when she realized a slumber party with mom was just what the doctor ordered. Her fog lifted and she did her best to poke me with her unicorn horn 900 times, refuse to cooperate when the nurse took vitals and basically ensure I slept no more than 3 hours total.

All in all, yesterday couldn’t have gone better. We fully attribute that to the prayers you all said for us this month and all day long. We are the most blessed family on the 7th floor and we aren’t taking it for granted. I know that open heart surgery next month isn’t going to be a walk in the park, but I'll say it again - we NEEDED a good day.

Back to present day:

LOL! (said God, probably) We have a new complication. And if you are in the medical field and read this explanation please remember I barely made it thru 7th grade biology, so explaining heart anatomy isn't my thing. (But if you are reading this and judging my grammar, know I was the editor of my High School newspaper so I'm probably right on that comma placement).

Ok, back to Stella's heart. The day we got discharged the head of the Cath Lab came by and told me he had seen the results of her Cath and Echo and wanted to hit on all the potential issues going into surgery. I fully understood all of them until he mentioned her enlarged neoaortic root. What is that, you ask? Great question. Her neoaorta is something her surgeon built during her first open heart surgery and all the blood leaving the heart goes from the right side of her heart through her pulmonary valve and out to the body through the neoarta. Got it? Sweet.

Stella has 2 valves instead of 4, and her aortic valve has always had mild leakage but nothing her Cardiologist has ever been concerned about. So this enlarged vessel isn't a good thing, but we don't know how long it has been enlarged. We also don't know what caused it to be enlarged. Its a basket of "we don't knows". Its nothing anyone has seen or can barely see on an echo now that they know it exists, so that makes it more frustrating for all of us (because nothing about this has been hard or frustrating so far)

Here is what we do know about the next steps going forward. Our cardiologist will present Stella's case before the entire Cardiology Team on Wednesday, which is something that should have been a formality and now will become a conversation. Do they repair this enlargement while she is open on the table? The Fontan procedure involves the outside of the heart, so if they repaired it her surgeon would be cutting into her heart again and adding to the time she is put on bypass. BUT, if they don't repair or address it, and it worsens, would she need another open heart surgery to repair it? How could it negatively affect her heart anatomy if it stays the same or gets worse? What would even be the best way to monitor it since we can't see it on an echo?

Lord, please come back soon.

Because that is where we stand. In prayer, I'm here holding a Bible and a bottle of xanax. I wish I were kidding. It's been a hell of a week. We lost a very close family friend, my little sister's mother in law is losing her battle with cancer, and it just feels like death is everywhere. As we are surrounded by the reality of how futile our earthly life is, I find hope and strength knowing Christ came to this broken place to save us and make all of our hearts new again.

Focusing on this one, as always:

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.”

2 Corinthians 4:16-18

As promised, pictures from Stella's Cath on Tuesday! Stella “big pimpin” into the Cath Lab (sorry, mom), before and after photos of one of her largest collateral vessels, her cousin fan club, and a few more because she so dang cute I can’t handle it.