Santiago had a remarkable weekend!
We are blown away by his progress! Our little superstar.
I've been hanging out with my lil homie this afternoon. He is doing great. "Very stable" are my new favorite words. He is still sedated but he's slowly being weaned off some meds. Within the next few days the doctors hope to remove his chest tube and breathing tube. Once those tubes are out we can hold him again. Hooray!!
In celebration of his 1 week birthday I read him "Curious George Goes to the Hospital." I have a feeling this book will be on heavy rotation for the next few years.
I love his fat little feet! I asked the nurse if they were normal baby feet and she told me "no way." He is still pretty swollen from surgery and retaining a lot of water. They're giving him a diuretic every 6 hours to help "dry him out."
He's only been here for a week, but I can't recall what life was like without him. I Heart Santiago, big time!!
They closed Santi's chest today at 1:30pm.
After his Norwood on Tuesday, his chest was left open to accommodate swelling and for easy access in the event of an emergency. Luckily he has been very stable so they decided to close him up. His incision is about 4 inches long and 2 inches at its widest. Closing an incision this size on anyone, even an adult, would be a major procedure.
He did pretty good. His blood pressure dropped initially, but the nurses are doing what they need to do to keep him stable. For the next 24 hours he'll be watched very closely. There is even a chance they could open him up again if he isn't doing well. But if I know my Santi, I know he's going to be just fine.
We certainly feel all the love and prayers that are coming our way. Keep them coming! The road to recovery starts tomorrow!
In the NICU at Hollywood Presbyterian he had oxygen and a feeding tube.
With Dad in the CT-ICU (Cardiothoracic ICU) at CHLA. They removed his feeding tube becasue he will not eat until after he is stablized and recovering from the Norwood. They have the SAME hair!
Then our little show off decided that he could breathe just fine on his own and they removed his oxygen.
Today has been one of the toughest days of our lives.
Santiago was picked up by the surgery team at 7am.
We were a mess. There's nothing we could do except wait, anxiously wait. We walked around the block and got some breakfast. Then posted up in the family lounge. Our parents, Ricky and Renee came to the hospital around 9:30am.
At 9:50am Dr. Starnes came into the lounge. He had a smile on his face. Santi did great during surgery.
At 11:30am Santi was back in his room getting stabilized and we were allowed to go see him. Considering the circumstances he looked good, pale but good. His chest is open and will remain open for at least 3 days. He has multiple IV's, he's receiving blood, oxygen and help from a pacemaker. He will be heavily sedated for the next few days. He is doing well but he's not in the clear yet. The first 24 hours are the most critical. The doctor told us to take a break and get some rest. Surgery is tough, but the next few weeks/months of recovery is going to be even tougher.
We kissed his head and told him how proud we are that he is so strong. We told him how much we love him and how we can't wait to hold him again. This sweet new life has been through more in 4 days than most adults have in a lifetime.
Abe and I stayed at CHLA last night. We got to help bathe Santi and put him to bed. He is a great sleeper and is soothed very easily. We didn't get much sleep. It's 5am now and the surgery team will be here between 6 and 7am.
Today is his Norwood. The first of 3 planned, open heart surgeries. We know he will be in good hands but we can't help but be worried, nervous, sad, anxious, scared, overwhelmed and every other adjective that describes new parents who are about to see their newborn undergo a MAJOR operation.
We are so grateful for the time we spent with him last night. He is our little love, so perfect and tiny. Yet so strong and feisty. He's a warrior, I just wish his didn't have to go to battle so soon.
The day before a monumental day is almost as big as the big day itself.
When I found out on Tuesday that I'd be induced on Thursday, suddenly Wednesday became the most important day of my life.
Here's how I spent my day. (Which also happeneds to be Abe's Birthday, HAPPY BIRTHDAY LOVE!)
I started with an old fashioned glazed donut from Bobs at the LA Farmers Market. Followed by a blow-out, mani and pedi at the Paint Shop of Beverly Hills.
Then we made a last minute run to Babies R Us and I FINALLY got to use one of those "Expectant Mother" parking spots, score!
We did a little more shopping at the Grove and got Uggs for the whole family. How cute are Santi's!!
I double checked my hospital bag.
Then we ended our day at Burger Lounge (my fave!). My last supper consisted of a delicious turkey burger and fries. Simply perfect.
Every Thursday is filled with Doctors appointments. We spend a lot of time sitting in rooms just like this.
Abe and I met with our surgeon today, Dr. Vaughn Starnes.
As soon as we found out that Santiago had HLHS we were on a mission to find the best resources possible. Living in San Diego, Rady Children's Hospital would have been the natural choice, it's a great hospital. But as any parent knows sometimes "great" isn't enough. I wanted the best. I needed the BEST.
After a lot of research, and even considering Children's Hospital Boston (the country's top neonatal cardiac hospital) we decided on Dr. Starnes at CHLA. After meeting with him today we are both confident that we made the right choice.
He told us that considering the circumstances, Santi's heart is in relatively good shape and that he is a great candidate for the Norwood-Sano surgery. The Norwood-Sano will take place 3-5 days after he is born.
This is roughly what we can expect following the surgery: 5-7 days in the cardiac NICU, followed by 3-4 weeks of recovery in the hospital. He will have a feeding tube that goes through his nose, among other tubes, wires and monitors.
Everything mentioned above is the "best case scenario." There is always a risk for infection or other complications. We will do everything we can and the doctors will do everything they can.
For a better understanding, here is a picture showing how his heart is different from a healthy heart
