Cardiology Check Up

/

It feels like it has been just about forever since I've posted anything heart related. I guess that's a big sign that Santi is a two year old first and an HLHSer second. His heart condition doesn't prevent him from being a normal (wild, unruly, loud, demanding, hilarious) two year old.

We had his six month check up with Dr. Frazer at Rady Children's in SD. The good news is that he is doing great, there is really nothing to report! Except this...
He's ready for his third open heart surgery, The Fontan.
Just to recap, Santi had his first surgery, the Norwood at 4 days old. His second, the Glenn, when he was 3.5 months. It's been a LONG time since we were in-patient at CHLA. He has a good track record of speedy recoveries and few complications. Let's hope (and pray and hope and pray some more) that this surgery goes just as smoothly.

Here's what the CHLA website says: Fontan procedure. This operation allows all the oxygen-poor (blue) blood returning to the heart to flow into the pulmonary artery and lungs, greatly improving the oxygenation of the blood. The Glenn shunt, connecting the superior vena cava to the right pulmonary artery, is left in place. A second connection is made directing blood from the inferior vena cava to the right pulmonary artery as well. This connection can be created in slightly different variations, depending on the method your child's surgeon prefers, and what is best for your child.

We will take Santiago to CHLA the first week of September for his pre-op cardiac catheterization. At that time we'll get a date for the Fontan. Most likely mid October.

Palm Springs

/

My 10th annual Palm Springs girls weekend rolled around just in time! I was in need of some serious RR & GT (rest, relaxation & girl time!)
We rented a gorgeous house nestled against the mountain and spent 3 fabulous nights swimming, tanning, eating & crafting. Flower crowns, portrait painting, Cards Against Humanity, bike riding & sparklers. Oh yeah, it was the perfect getaway!!!

Ryan Cruz

/

While we were at the farm, this adorable face kept popping up on my Instagram feed. I fell in love with him instantly. "Who is this gorgeous child?!" I thought. After clicking a few photos I learned that he is 3.5yo Ryan Cruz Saldana and he's gone.
He was tragically struck by a car while playing in the front yard of a family members home. This story ripped my heart out of my chest.
How could this sweet, loving family (who I don't know personally) lose their precious son? Why would he be taken from them? Oh and to know that the heartache I feel is the tiniest fraction of the suffering his parents are feeling is unbearable. Here I am, a total stranger, motherhood being my only connection with Ryan's mom, and I have literally spent days and nights sobbing over his loss. Tears for him. Tears for his mom and dad and everyone who knew and loved him.
As a heart mom, I was forced to think about my son dying. I hate to say that, but it's true. When we received his diagnosis, I was 21 weeks pregnant. So for the rest of my pregnancy, through his first 2 surgeries and even still today, I have to think about losing my beautiful Santi. I'm grateful for every moment I have with him.
Just a little reminder to cherish your loved ones. Hug them tight. Tell them you love them. Tomorrow is not a guarantee for any of us.
Follow Ryan's mom at www.babyboybakery.com

The farm

/

For Santi's latest trip, (His forth flight since he first started flying 2 months ago, if you're keeping track!) We took him to visit my grandparents in East Texas. They have a lovely farm, about 180+ acres, brimming with little boy adventures. There are tractors, motorcycles and a 4 wheeler with no brakes. Acres and acres of thick woods to stomp around in and several gardens which he plowed with his toy tractor.

Within 5 minutes of being on the farm Papa had Santi and I up in a tractor cruising the property. I was pretty sure Santi's head was going to explode with excitement. Santi started saying a new word after that, "Papa!" "Papa!" He fell in love with my Papa. They bonded instantly. Later in the week Papa took him on the riding lawn mower and fed him freshly picked wild berries.

I lived in Houston as a kid, a 4 hour drive from the farm and my mom would take us there for almost every school holiday and a few weeks every summer. It is such a special place for me. It is quite and calm, rich in nature and enchantment. Green and lush. Seeing Santi here, enjoying the company of grandmother and papa was simply beautiful.