Abe has been growing his hair since Santi was born. He grew it with the intention of one day donating 10+ inches to Locks of Love. Santi is almost 3 and Abe is ready for a change.
We headed down to Disconnected Salon and took care of business. Abe ended up donating over 15 inches of hair. We asked Santi if he was ready for a hair cut too and he said "No!"
Looking at him now, it's hard to believe everything he had battled and conquered over the past three months. Open heart surgery, diaphragm plication, a thoracotomy, four chest tubes, days without food, daily blood draws and four weeks in the hospital.
It's all a distant memory for Santi. One that will continue to fade from his mind, but will forever be ingrained in his soul. Seven weeks ago Santi was discharged from CHLA and I'm so happy to say he is doing so fantastic!
In celebration of his recovery and our baby moon (I'm 29 weeks!) we jetted over to Maui for a week of some serious R&R! We stayed in a gorgeous villa at the Kapalua Bay Montage with Abes parents. We soaked up the sunshine and the Aloha spirit. Santi needed this. And so did we.
That's a cup full of grapes. Not whoppers.
This guy is a great traveler! A long flight with a toddler is stressful. Period. I can't help but be nervous. You never know if they're going to be a sweetheart or have a major meltdown. Luckily we had a little sweetheart for all 5+ hours of the flight.
He watched movies and played the entire flight. Then fell asleep for the drive to kapalua.
Fun with daddy!
We watched humpback whales migrate between Maui and Molokai everyday! It was truly majestic to see them breach and play.
He's not a fan of sand
I wish you could hear the way daddy makes him laugh!
The belly!
On our last night we went to a Luau. A first for me and Santi.
After convincing him he didn't need a lollipop the size of his head we had a very smooth trip home. He conked out with only an hour left of our flight.
It was truly a spectacular vacation. ~Aloha~
Santi spent the entire morning playing in his jammies. We are so happy to be home. Tomorrow is our follow up at CHLA. Let's hope for a clear X-ray!
Believe it or not, staying in the hospital with your child actually has some perks. The one on one time is unparalleled. There is no pressure (and no possibility) to leave, to be anywhere, to make play dates. Just me and him.
Abe has been with us all day, everyday. Our families have stayed for countless hours and made sure we had plenty of delicious, non-cafeteria food to eat. But the one on one time I've shared with Santi over the past 19 days is priceless. They haven't been the best or most enjoyable days of our lives, but they are days I will cherish. Days when I could be there for him, around the clock, without distractions. I cherish them because they are rare and limited days when all he needed was me.
Another perk of our extended stay? Watching him sleep. At home, as soon as he's napping or in bed for the night, I'm off to take care of other things around the house. I check the baby monitor, but I don't take the time to just watch him sleep. Here in the hospital when he falls asleep, I get to enjoy the precious serenity of his sweet face and tiny body. I love to watch him drift off to dreamland so comfy and cozy. Getting the space, time and solitude to see a toddler at rest is really special. I wish the circumstances were different, but I'm grateful that I can recognize every bit of joy in a dark situation.
This guy. He is everything.
Baby stepping our way to CV Acute.
Santi made great progress today. He stood up, with assistance and lot of screaming, for about a minute. He also sat up in a chair twice. 15 minutes the first time, 30 minutes the second.
Aside from the three diuretics he's on, getting him moving is the only way to help clear all of the fluid away from his lungs.
First time standing post op
Naptime
He is still very depressed. Which is just about the hardest thing in the world to see. Nothing makes him smile. Not new toys. Not special visitors. Not his favorite movies. Nothing. It's awful.
I know this is only temporary. I know we will be home soon and soon this will be a distant memory. But for my sweet toddler, every hour is a miserable eternity.
Please continue to send love and prayers for Santi's happiness and wellbeing. We want to see his smile!
Movie and cuddles with Mom and aunt Renee
Story time with daddy
Santi is exactly where he should be in the recovery process.
Yesterday they removed his urine catheter and V wires. We didn't even know he had V wires pacing his heart. But it's standard Fontan protocol. They also removed the arterial line from his groin and the IV from his foot. And he's down to 1 liter of oxygen.
He returned from surgery with a lot of accessories. It's nice to see them go away, one by one, until eventually I will just be looking at my sweetheart and his fresh incision.
The fluid output from his chest tubes are average. His pain management is on track. Everything is as it should be, except my baby is sad.
He's sad he can't have as much water and milk as he'd like. His fluid intake is restricted to 1oz per hour. For a kid who's used to 30+oz of water and 30+oz of milk (goats milk) a day, it's a very difficult adjustment. He's sad he can't sleep on his belly. He's sad we can't go home. His nasal cannula and IV are upsetting and annoying. He's so sad. It's a very confusing situation for a toddler. Throw some pain meds on top of that and you get an unhappy, disoriented, thirsty little dude.
The gifts are helping by offering a brief distraction. I'm hoping to see Santi's big, bright smile again soon.
Post-Fontan! I can't even write that without tears.
Make no mistake. They are tears of joy! I hear all the heart mamas clapping, shouting, celebrating and cheering for us as I say,
WE ARE POST-FONTAN!!!
Freakin' post-fontan you guys!! Since the day he was born we have wondered if he would make it to the Fontan. Some kids don't. If we would ever jump this hurdle that has been on our calendar and in the back of our minds for years.
When I was pregnant and received Santi's HLHS diagnosis, they tell you about the "3 surgery process" for transforming your child's heart into a functioning single ventricle. Just to be clear, he will never have a left ventricle.
First, there's the Norwood, which they have as a newborn. Santi was 4 days old for his.
Pre-Norwood. No scar!
Post-Norwood. 2 weeks old
Then, there's the Glenn, which happens around 6 months old. Being an overachiever, Santi had his at 3.5 months. Prefaced by a 22 day hospital stay for a blood infection and 3.5 months on continuous oxygen. That was fun.
Post- Glenn. 4 months old
Finally, they tell you about the Fontan. The third and "final" procedure for HLHSers. The Fontan usually happens at age 3 or 33lbs. My dude is on the fast track once again. He's 2.5 years old and 31.2lbs. (I say "final" because it's only final for the lucky ones. So many HLHS kids have to endure many more.)
After the Fontan? So what's next? LIVE LIFE! Not that we haven't been living a fabulous life with Santi. We have. But it's a whole new world not having something like open heart surgery looming over you.
We are facing a few rough weeks of recovery, but we can handle that.
Sometimes, when I take him to the store, if I only have one or two things to grab, I let him walk with me and hold my hand. Sometimes he stays right by my side, other times he runs off and waits to be chased. Do you see the speck that is Santi at the end of the aisle?