Sunley has had 8 NG feeding tubes through her nose, countless IV's and even more unsuccessful IV placement attempts (enter Momma Bear), too many drugs to keep track of (I tried), tons of oxygen support including 3 intubations (not bad for a single ventricle heart kiddo!), 1 interventional Cath, 2 open heart surgeries, and I've actually lost count of her hospital admissions. I believe she's had 7 hospital admissions, and 3 oxygen interventions at home. She has been intervention free (I'm including just basic oxygen support) for a whole year since Christmas, and really seems to be thriving! We thought at the beginning of winter that we were starting to see the decline, but she has definitely bounced back to the point that we would be shocked to hear that it's time for the next surgery. We think her decline must have just been the onset of cold weather, or her body fighting some mild virus. I was seeing brief drops in her saturations into the high 50s, but they were SO brief and never needed medical attention. Lately, she has been having oxygen saturations in the high 70s even up to mid 80s!

Sunley will have another surgery, but we hope to put it off one more year, if her cardiologist thinks she can wait that long. She will have the Fontan procedure. This is the last planned open heart surgery for Sunley. Unfortunately, it doesn't actually fix anything; The Fontan adjusts her circulation yet again to force her heart to pump in a different way than ours, with just her single ventricle. This surgery will slowly wear out her liver, which is why it's hard to get too excited about it. There are no really great options for a single ventricle kid, but this is certainly better than the alternative...as long as it works as planned.

Our hope is that Sunley will have a smooth Fontan surgery, a smooth recovery, and will finally get to experience oxygen saturations in the mid to high 90s! That would be such a beautiful number to see. We hope that her heart, as well as her other organs, will adjust to the new pressures created from the Fontan circulation. And in the meantime, her momma will be doing everything she can to help the research being done for Fontanners. More on that another time!

If the Fontan doesn't go as we hope, it is possible that Sunley could need a heart transplant, or a heart and liver transplant. But we seem to be very far from that outcome, and there is no reason to believe that a transplant will be her story. I always thought a transplant was a fix. I had no idea that your body always ends up rejecting the heart eventually, or that you had to take so many daily anti rejection meds. I also didn't realize how many people died without donating their organs. You can probably guess that I have a pretty strong opinion on that, especially as a believer who definitely won't be needing this body past her expiration date.

I digress, as always. Sunley's next surgery should give us SO many more years with our girl, which is the only part of the whole thing to which we can look forward! For now, we are enjoying all our days with our very spunky, very normal toddler.