Santi isn't just our son, he's now the namesake of a new development in El Paso! We came out to El Paso for the ground breaking ceremony and it was so cool! The ground breaking was covered by all of the local media, we even made it into the paper!
I'm laying in bed, winding down, checking blogs and I just came across the most beautiful sentence from one of my favorite bloggers, "Cup of Jo."
"As a parent, it's strange and amazing to think that you are a little person’s safe haven. When I'm putting Toby to sleep, and he's cuddled in my arms, I sometimes think, But I’m just a random person! What do I know? But to this little person, you are the definition of all things safe and true, a touchstone and true north."
...But to this little person, you are the definition of all things safe and true, a touchstone and true north! With Santi in his clingy "Mama phase," this sentence really speaks to me. I'm happy to be the legs he clings to while I wash the dishes, to be his true north.
Our little love did great in the hospital overnight. I cuddled him all night in the makeshift recliner. Making sure he got to rest and wasn't disturbed by the routine vital checks.
When he woke up Saturday morning he seemed to be almost back to himself. He was a little fussy and irritated (understandably!) by the IV in his hand and the leads stuck on his chest, but before I knew it he was happily playing. By 8am I received word that we would be released WHOO HOO! We were home by 11:30, greeted by Stella and a million puppy kisses.
Leaving your baby in the operating room is the worst feeling!
We checked in at 9:30 this morning, went through the standard series of paperwork and waiting rooms until 11am. Despite having his last bottle of milk at 5am, Santi was doing great...until it was time for his vitals.
He is terrified of having his blood pressure, height and weight taken! We powered through it and he was back to his playful self by the time we got to pre-op. A nurse came to get us and escorted us directly to the operating room. We took him in and spoke with the doctors. The anesthesiologist had me lay him on the table and we held his hand while he was given gas to fall asleep. Once his screams through the mask subsided, they told us it was time to go.
It is SO HARD to leave the room. Handing your child over is bad, but waiting to hear from the doctor is the worst!
At 2:30 we heard from the nurse. "He's in recovery and everything went well, the doctor will be out to see you in 30 minutes." At 3pm, on the dot, the team found us in the waiting room. "Everything went great!" She said. Whew, Such a relief!!
Santi is in recovery now, but we won't be able to see him for another hour or so.
They closed two large collaterals that were putting stress on his right ventricle, making it work harder. He did not have any narrowing, so no ballooning was needed. They also confirmed that his left ventricle is unusable and he is not a bi-ventricle candidate.
He and I will stay here tonight and he should be released in the morning.
It's been a crazy week!
On Monday we found out that his cardiac catheterization was scheduled for Friday, tomorrow! Whoa, that's too soon!
We were unsettled at the short notice and needed to get a second option ASAP! I was given the runaround by Radys records office when I called to get the echo results overnighted to CHLA. You know...policy, procedure, mail us a consent, we can send it next week, blah blah blah
So you know what I did? I went down there and sweet talked 'em. After a few minutes they said they'd work on it, it would probably take a few hours. I didn't have a few hours. But instead of rolling my eyes and stomping my feet, I graciously smiled and explained the importance of getting the second opinion. It's amazing how powerful kindness and sincerity can be. But honestly, Santi was with me and I think it was his smile that really won them over. Ten minutes after they told me it would take "hours" to get the Echo on a disk, I was walking to my car, disk in hand!!
I drove the disk to CHLA and hand delivered it to our former cardiologist, whose opinion I value and respect.
Just a few hours after getting her the disk, she emailed me some answers.
She explained that he has both types of collaterals and that they would need to be taken care of sooner than later. She said it could wait a few weeks, but after a lot of deliberation, Abe and I decided to keep Santi's appointment tomorrow. We're nervous, anxious and sad to send our baby in for another procedure but this cath will give us a better understanding of his hearts current function.
With all that excitement over the potential of a bi-ventricle repair, I also asked her for a second opinion on that too. Here what she said:
"As far as left ventricle growth- unfortunately, what is seen is not his left ventricle; he has a thick muscle that appears to be the wall between the ventricles but his LV is still extremely small."
Sadly, it looks like he is not a candidate for the bi-vent.
Santiago's cath is scheduled to start at 11:30am tomorrow. Please keep him in your thoughts and prayers. I'll keep you updated right here, on the blog.
It's been so long since I've posted anything heart related, I kind of forgot this is an HLHS blog!
Santi's last open heart surgery (the Glenn) was NINE months ago today! (I can't believe it!) Our main goal after the Glenn was to keep him healthy. No colds, no flu, no cough, no hospital visits. And you know what? We did it! I don't know if it's luck or if it's because we are agoraphobic germaphobes but we managed to keep him healthy amidst a killer cold and flu season. YAY!
Yesterday we had an appointment at Rady Childrens Hospital in San Diego. He had a sedated echo cardiogram and a check up with his cardiologist. When we were first told that the echo would be "sedated" we were a little put off. CHLA never suggested that his echos be sedated. But honestly, it wasn't that bad. They gave him some cough syrup type sleep medicine orally. He cuddled up on me and dosed off in 9 minutes. I laid him on the table and they proceeded with the echo (an ultrasound of the heart), which took about 50 minutes. When it was over, we woke him up with tickles. We had one sweet little drunk money on our hands! I know its sad to see your kids medicated, but it was also really cute. He came out of the sedation very smoothly, no fussiness, no nausea. Then we met with the cardiologist to get the results.
The Doctor had good news, potentially great news and bad news. The good news is that his heart looks good. It's squeezing well, the valves have very little leakage and there was no mention of scar tissue from his surgeries. The potentially GREAT news is that his left ventricle is growing. (wait, WHAT?!) And because it's growing, he could maybe, possibly, potentially be a candidate for a bi-ventricle repair. AKA- WHOLE HEART REPAIR! Mind officially blown.
So until yesterday, Santi's path would have led him to the Fontan. The Fontan is commonly the third and hopefully final surgery most HLHS kids have when they are about 3 years old. But now we know there might be another option for him. We just have to be patient, do more research and see what they find in his next cath. Which takes me to the bad news.
He has to go in for a Cardiac Catheterization, soon. Like within the next few weeks. Remember what happened at his last cath? Yeah, our over night procedure turned into 14 days of IV antibiotics and an early Glenn! 27 days at CHLA.
Anywho, during the echo they saw some "collaterals," which are new blood vessels he doesn't need and could potentially cause problems. So they want him to come in for a cath to get the collaterals coiled and also to observe his heart function from the inside.
What a day! So much to digest and prepare for. After our appointment Santi was a little sleepy, but pretty much back to himself by bath time.
SANTI - The First Year from I Heart Santiago on Vimeo.
On March 23, 2012 Santiago Banks was born and our lives were forever changed. He was diagnosed with HLHS
(Hypoplastic Left Heart Syndrome) in utero. As first time parents, this news was terrifying. Santiago endured, 2 open heart surgeries and 7 weeks in the hospital by the time he was 4 months old. Despite that, the first year of Santiago's life has brought us so much joy and we hope to share that with you, through this video.
In celebration of both my boys birthdays (Abe 3/22 & Santi 3/23) we went to the World Famous San Diego Zoo! Abe and I hadn't been there since college! It's so huge, we only covered a quarter of the property. Santi seemed to like it, but he was a little overwhelmed by all the people, animals and new things to see. He was very quiet and just soaked it all up. When he's older, we will definitely get an annual pass!
We spent six weeks in El Paso and had a great time. Here are a few photos from our visit.
Santi's second cousin Arielle turned one on 3/10! We were happy to still be in El Paso and celebrate with her.
Santi is going to be a cousin!
My beautiful sister-in-law, Renee, is due mid-April. We are all so anxious to meet the newest edition to our family. To add to the excitement, they chose to be surprised by the baby's gender. We all have our guesses. I say it's a girl, Coco says is another boy for sure. We'll all just have to wait and see!
I just returned from a mini vacation up to Washington DC to visit the Littles! We had such a great time seeing the sights. Santi stayed home with Abe, while I got a few days to recharge and get inspired by Lindsay and Eva.
Eva is a year and a half now, I can't believe it! She is so smart, independent and well spoken, sweet and fun to be around. She loves reading books with Lindsay, eating oatmeal and giving kisses to her frog, Ribbet. Watching Lindsay mother her is a huge inspiration and motivator for me. They are my model of what a parent toddler relationship can be. And it makes me excited for what's right around the corner for Santi.
Oh wow! In one month we'll have a ONE YEAR OLD child!!
Abe's family and their best friends have a wonderful tradition of walking the Race For A Cure 5k every year. Santi and I joined in for the first time this weekend.
We walked in memory of Abe's Aunt Yoly, who passed away in 2011, and in celebration of Abe's Grandmother Rosa who beat breast cancer a few years ago. We also walked in celebration of my sister, Aubrey Renee, who was diagnosed with breast cancer when she was 27! She is stronger and healthier now more than ever and is going on 7+ years of being cancer free!!
Today (Valentines Day!) marks the end of CHD awareness week. Congenital Heart Defects affect 1 out of 100 people and HLHS is a little more rare, affecting 1 out of 1000.
Looking back on the past week of photos it's hard to imagine that our life would be any different if we had a healthy heart son. Santiago is so fun and full of life. He has a big personality and an infectious smile. He does everything that other kids his age do and that is what impresses us the most. We are in awe of him, his strength and his sweetness.
