Oooh, date night!
/We went to see comedian Bo Burnham at the Balboa Theater in San Diego. It felt great to sit and laugh for a couple of hours. If you're not easily offended look him up on YouTube, lol!!
El Paso
/We spent the past few weeks in El Paso. My last flight before baby comes!
My little traveler!
Santi had a great time with cousin Ricky. Their favorite thing to do is race each other and see who can scream the loudest. They are so cute together.
Playing with Ricky and Chadi at the playground.
Visiting Great Grandma Rosa.
Next time we go to EP, we'll be a family of four!
Chop Chop
/
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!"
My Guys
/Santi's favorite place to be these days is snuggled close to my belly. He lifts up my shirt saying "open baby," then tells me, "mommy, that baby so cute!" Or sometimes he says, "mommy belly SO biiiggggg!"
I'm 31 weeks!
Maternity Leave
/I have the greatest job.
Santi comes to work with me. I workout with a great group of mommas, we entertain the kiddos while building muscle and burning fat, we soak up sunshine and I always leave feeling recharged. I love teaching Stroller Strides. And I love that Fit4Mom is a momcentric company, full of women supporting other women.
Today I taught my last class before maternity leave. I'm looking forward to going back to work around the end of May.
How's that for a view?! (Santi's hiding)
Celebrating
/Santi is celebrating with a lollipop because he just got cleared to go back to a full fat diet. He has been on a low fat diet since his surgery in November. Last week he went in for an X-ray, everything looked great, so we had a three day "fat" trial. Meaning he could eat whatever he wanted. The doctor encouraged us to feed him ice cream and French fries!
Today we went back for a follow up X-ray and once again he had a clear chest. No fluid retention! It feels great to be over this hurdle.
Now we just have three more months on Coumadin and some diuretics to wean.
Cousins
/We had the privilege of watching my nephew Rogan for a little bit today.
Santi just adores him. I'd say he's ready to be a big brother.
Aloha!
/
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~
January
/We are easing into 2015, smooth and steady. Santi is doing fantastic.
His sats are consistently in the mid 90's. His most recent X-ray was crystal clear. His cardiologist reduced some of his medication from 3 times a day to 2 times a day. And we are approaching the end of his mandatory low fat diet.
We started attending a mommy and me preschool. That last picture is at the end of his first day. He loved it so much, he was sad to go home.
Santi is also happy to be back at swim lessons!
A rare rainy day in SoCal.
Santi's first trip on the Coaster, our local train. He LOVED it!
2015
/Happy New Year!
Merry Christmas
/
Christmas Eve
Christmas morning
My sister, Aubrey and nephew, Rogan
Santi sitting on his brother
Best Buds
/Santi & Kai checking the surf in Carlsbad.
After our walk, we had smoothies and exchanged Christmas gifts. We are so very happy to be home, enjoying our friends and our normal, mellow routine.
Six Weeks Post- Fontan
/Santi had a check up with his San Diego cardiologist today. His X-ray showed a tiny bit of fluid on his right side. The Doctor didn't seem too alarmed and didn't make any changes to his medication.
Overall, everything looked good and Santi did great at his appointment. It was a long day with lots of waiting around. Santi played quietly, ate lots of snacks and waited so patiently every step of the way. He constantly amazes me.
Happy at home
/We are getting into the Christmas spirit and enjoying every moment at home.
Santi helped pick out the perfect tree.
RAD!
/
His shirt says it all! Santi had a rad follow up appointment.
Santi's X-ray was clear, no pleural effusion! His blood work came back good too. The CHLA team is handing us back over to our San Diego cardiologist for regular check ups. Hooray!!
The weather and traffic getting to LA and back was awful! We left the house at 10:30am and didn't get home until 8:30pm. But getting the good news was worth the effort! Now we get to enjoy a relaxing weekend at home.
Four
/There's something we've been wanting to tell you. But amidst the seriousness of Santi's surgery and recovery, it just never felt like the right time to share our exciting news.
This spring we will become a family of four. Santiago is going to be a big brother!
I have done all of the early genetic testing blood work and ultrasounds. I'm happy to say that we have seen a four chamber heart and all of the blood work looks good.
We are excited to meet our second baby BOY this April.
Happy To Be Home
/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!
The Best Day Ever
/We were discharged early this afternoon! Knowing how easily it is to be re-admitted, it's hard to celebrate too much, but we are thrilled to be taking Santi home today.
Ready to roll! Check out daddy's Dusty CropHopper
Santi had another good nights sleep and a crystal clear X-ray this morning. I couldn't ask for anything more.
He is going home on higher doses of diuretics, something we believe may have been overlooked with his first discharge. Santi is not on a fluid restriction, but we will closely track his intake to ensure we are doing our part to keep him healthy.
Our first stop after the hospital was Lassens market in Los Feliz. They have the best sandwiches!
Our second stop was Studio Number One, the office of Obey Giant, to visit Abes' friend and fellow artist, Ernesto Yerena. Their office and design space is just as cool as you'd imagine. Santi managed to get his second celebrity photo of the week with Mr. Obey himself, Shepard Fairey.
Shepard, Santi & Abe
the gallery at the studio
I love my guys!
It has been a roller coaster of a week. We are happy to be on our way home!
Sleepy guy
An Awesome Day
/What can I say, we had an awesome day.
For starters, we had our favorite nurse last night. She is so considerate of Santi. He managed to sleep peacefully from 9pm to 6:45am, when blood draw came in. She does her job, IV meds, vitals, etc, she just has the magic touch to not disturb him and I am so grateful for that.
I've been working with Santi on staying calm for X-Rays, and today it paid off. It's the first time, ever, he didn't scream through his X-ray. I felt so accomplished. On top of that, his X-ray was perfect and clear.
Practicing for his X-ray
Since Santi had zero drainage overnight and a clear X-ray they pulled his tube this morning. Yay! Within 20 minutes of losing that tube he was more of himself than I've seen in a month. He was SO HAPPY. He just wanted to walk the halls and play all day.
Playroom!
Then, we were treated to another surprise. Actress Malin Akerman (The Heartbreak Kid, 27 Dresses) was visiting our unit, bringing toys to each child. She was so sweet and beautiful and surprisingly tall. (I'm 5'9 and she makes me look petite in this photo). She gave Santi a HUGE box of crayons and a cool coloring book. Santi and I were both thrilled. By the way, I'm glad I actually showered and got dressed today!
The tube is out and we're off oxygen, so if our X-ray looks good tomorrow then we are one foot out the door.
Steady Improvement
/We are having a great day.
Santi had another clear X-ray this morning, no sign of fluid. His chest tube had ZERO output in 24 hours. And he was given the green light to resume a low fat diet. Yay for milk & cookies! He's still on a fluid restriction of 31oz a day, so we have to pace ourselves, which is as hard as you can imagine. Try telling a toddler who hasn't eaten in 5 days that he can only have 2 ounces of milk at a time, LOL. He was thrilled to eat low fat/no fat food and have sips of milk throughout the day.
Happily snacking
We also had a special visitor, Panda the puppy! Oh man, dogs make Santi SO HAPPY. This therapy dog program has made such a great impact on us.
Panda the puppy!
kisses
If his output stays minimal while on the low fat diet, then his chest tube will be removed tomorrow or Wednesday. That will be followed by another few days of X-rays to ensure the pleural effusion doesn't return.