He's "Acutie"

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Santiago was moved to CV Acute yesterday!

CV Acute, also known as, "step down,"
also known as, "the place you go before you go home!" He is doing SO good that we got to do skin to skin yesterday and today.

...And tomorrow we get to attempt nursing! So far he's only had my milk but through a feeding tube. I've been warned that nursing can be very difficult with a heart baby. They get tired easily and hard time gaining weight. I won't get my hopes up yet, but I have a feeling he'll do just fine.

1 week post-Norwood

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Santi is 1 week post-Norwood today! I hold my breath every time I say this, but...He's doing great!

 

WARNING: graphic photos

We were debating about posting these photos.

They are graphic and painful to see. But in the spirit of full disclosure and helping future HLHS families understand the reality of the situation, we decided that it's best to share.

 

 

 

 

 

 

 

 

 

3/27 - Day of surgery

 

3/28 - Recovery, Day 1

 

3/29 - Recovery, Day 2 - Chest is closed!

 

3/30 - Recovery, Day 3 - getting wiggly

 

3/31 - Recovery, Day 4 - reconnecting with Dad and the pacifier

 

4/1 - Recovery, Day 5 - First food ever and first post-op snuggle sesh with mom

 

4/2 - Recovery, Day 6 - just being a baby :)

 

Making progress

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Santiago had a remarkable weekend!

  • His chest tube was removed
  • His breathing tube was removed
  • His catheter was removed
  • His umbilical IV was removed
  • He was weaned off a couple of medications
  • He has been practicing with his pacifier and shows great sucking/swallowing coordination
  • He got his first food ever! freshly pumped milk through his feeding tube
  • Plus, I got to hold him today for 2+ hours (first time since surgery!)

We are blown away by his progress! Our little superstar.

Hollywood reservoir

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Abe and I hiked up to the Hollywood Reservoir this morning with Ricky and Renee. It was my first postpartum "workout." Technically, I won't be cleared from my doctor to workout for another 5 weeks but I can't help it. I feel great and I needed to do something.

The reservoir is a short walk up the hill from our house. On a clear day you can see the hollywood sign and all across LA to downtown. It felt so good to get some fresh air!

The best way we can take care of our baby boy is by first taking care of ourselves and staying healthy.

1 week old

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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!!

 

 

All stitched up

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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!

Photos from the first 3 days

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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.

 

Surgery #1- Norwood

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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.

Spending the night with Santi

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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.

Cervidil is my Friend: A Birth story

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I knew for a few months that my doctors wanted my delivery be a scheduled induction. The process they explained was something like this: Cervidil for 12 hours, followed by Pitocin for up to 20 hours. No food or drinks, only ice chips. No getting out of bed, not even to use the bathroom. If the baby didn't come within 20 hours of Pitocin or if his heart rate dropped they would do a C-Section. I was not thrilled with this plan. But I didn't have much of a choice. All I could do was go with the flow, hope for the best and use the power of positive energy to get me through it.

So that's what I did. I excepted that the situation was beyond my control and at 12pm on 3/22 I checked in to Hollywood Presbyterian Hospital with a hopeful heart and a smile on my face.

Nothing happened right away. I didn't even put on my hospital gown until 2pm. Abe took notes throughout the night which helped us remember the sequence of events. I'm so glad he did, otherwise the whole experience would be a big blur. This is from his timeline:

2:20pm- I was 1cm. This was great because it meant that my body had already started the labor process on its own. If my induction had stayed on the original day 3/26, I probably would have gone into labor on my own.

3:05pm- Cervidil was inserted. It would be left in for 12 hours as planned. Cervidil looks like a little shoe string. They insert it into the cervix and it secretes prostaglandins to help the cervix soften and dilate.

4:45pm- I started to feeling crampy. I later learned those "cramps" were actually contractions. I was allowed to get up and use the bathroom as often as I needed. I was so relieved to be able to get up and move around.

7:00pm- My contractions were irregular, coming about 3-6 minutes apart. At this point, I thought we might be able to have him by midnight and he and Abe could share a birthday. (Just like my mom and I) But the nurses let me know that the doctors would rather he come in the morning. I was afraid that not being able to eat or drink anything would make me feel weak. But honestly, I was not hungry and eating ice chips was plenty.

10:00pm- Painful contractions coming regularly convinced me that I should get some pain meds and potentially sleep so I'd have energy to deliver in the morning.

10:45pm- I was given a half dose of Nubain to help me sleep.

11:30pm- The second half of the dose was administered. They told me it would last 2-3 hours. The Nubain definitely helped me relax and made the contractions bearable, but I could not fall asleep. I shifted from side to side, listened to his beautiful heartbeat on the monitor and talked to him to prepare him for what was to come.

2:00am- On the dot, the meds wore off. From 2-3am, I breathed through contractions and listened to my iPod. The contractions were coming at a very consistent pace of 2 minutes apart.

3:00am- The nurse removed the Cervidil and checked my cervix, I was only 2-3cm. The contractions were VERY strong. Knowing that I had 7cm to go and feeling the unmedicated pain of consistent contractions I requested an epidural. The nurse said it could take an hour before the anesthesiologist was available to administer the epi.

3:20am- My water broke on its own. I was in A LOT of pain.

3:30am- The nurse checked me, 4cm.

3:45am- Insanely strong contractions 2 minutes apart. I'm dying for the epidural and the anesthesiologist is no where in sight. They strapped oxygen to my face and it made breathing very distracting. I reached into my deepest depths, trying everything I could think of to get through it. I remembered holding ice in my hand during our birthing class. I tried deep breathing and even howling. Abe squeezed my feet during contractions in an effort to displace the pain. Nothing worked, I was convinced I would die.  The Doctor told us that when my water broke the cord got pinched and was causing additional pain.

4:00am- EPIDURAL, hallelujah! Seeing the anesthesiologist was like seeing an angel! But the 5 minutes it took for him to get set up felt endless. Luckily he was good at his job, sweet relief.

4:20am- The doctor checked me, 8cm dilated! But she told me that his heart rate was dropping and if that continued they would have to do a c-section. I told her no and I told Santi to get ready. We were going for it!

4:40am- It was like troops deploying, so much hustle and bustle, the doctors started yelling "GO, GO, GO..." they needed to move me to the delivery room. Abe scrambled to gather our things as we would not return to the labor room and we had to have all of our belongings with us. Once we were in the delivery room, Abe furiously tried calling our parents who where asleep just a few miles away. Unfortunately, our LA rental house has really bad reception and no ones phone could get service. So it was just me, Abe and 10 doctors.

4:50am- The doctor told me that his heart rate was dropping and my contractions were slowing down. They might need to use the vacuum. Instead, they started Pitocin, which helped my contractions pick back up and thanks to the Epidural I could not feel their strength. I said out loud, to my son, "Santiago, my love, you have 10 minutes, you need to be here by 5am or else they are coming in to get you." He is a great listener and very punctual.

4:57am- Santiago Banks Aguilar was born. Our lives are forever changed. We are madly in love.

 

Thursday, 3/22 12pm to Saturday, 3/24 10am

The day before the day

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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.

 

Cesarean Delivery: In My Opinion

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My doctors would be THRILLED if I said, "Hey guys, you know what? Let's just schedule me for a c-section at the doctors convenience and be done with it..."

That's not going to happen and here's why.

Like any mother-to-be, as soon as I got pregnant, I started researching everything about pregnancy, labor and delivery. This is my first baby and and I wanted to be as educated as possible. Of all the things I learned, the most impactful was that I should avoid a c-section if possible. I know that sounds strange. C-sections are so common now, they're routine. People schedule c-sections like they schedule hair appointments. But the truth is, it's major abdominal surgery.

In short, a c-section is when they cut through your lower abdominal wall and through your uterus to remove the baby. One out of three babies are delivered via c-section today, YIKES! But why is this percentage so high? Because it's very convenient for doctors, and some mothers, to know when the baby will be born.

So why am I so opposed?

  • Hospitals are a business. Like any other business, time is money. Once you step into a hospital to deliver your baby, you are on their clock. If you take too much time, you will most likely have a c-section
  • Baby does not experience a gradual "transition" from womb to world.
  • Longer recovery for mom, usually 3 days postpartum in the hospital, restrictions on lifting including holding baby. For me, this could mean not getting to see or hold Santi until AFTER his surgery :(
  • Mom cannot get skin to skin with baby immediately after birth.
  • If mom wants to have other children, she will be classified as a VBAC, vaginal birth after cesarean, which is a riskier delivery. The scar tissue in the uterus could tear causing the uterus to rupture. Some hospitals even have a ban on VBAC's. Making another c-section you're only choice for delivery.

With induction day rapidly approaching I have to face the reality that I will most likely be the one in three that has a cesarean delivery. I'm the perfect candidate: my baby is high risk and he needs to be born at the doctors convenience. And not just one doctor, several teams of doctors. 

I have let it be known that a c-section is my last resort. However, the ultimate goal here is to deliver a healthy baby. As a mom, I will do ANYTHING to make that happen.

 

Birth Plan: an oxymoron

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All of the pregnancy books encourage you to write a "birth plan." Something that will outline exactly what you want to happen on the day you deliver. For example: Who's in the room, what music is playing, drugs or no drugs, mirror or no mirror, will dad cut the cord, how should they hand the baby to you, etc.

At this point I can't help but laugh at the thought of a birth going according to plan. Have you ever heard of a birth going according to plan? I have not.  It is great in theory and it is wonderful to outline your "do's" and "don'ts," letting the doctors and you family know your wishes, but expect the opposite. It's hard for ME to say that because I am a true optimist but I'm also a realist.

My original birth plan would have looked something like this:

  • deliver at the UCSD natural birth center with a midwife
  • no drugs, no induction, no episiotomy, absolutely no C-section
  • coconut water and other snacks to keep my energy up for labor
  • freedom to walk around, use birth ball and the labor tub
  • skin to skin contact immediately after he's born

Doesn't that sound lovely :)

I found out the details of the reality of my birthing situation this week.

It's pretty much the exact opposite.

The Price is right

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The Price Is Right is iconic. The original show started in 1956, then Bob Barker took over in 1972. I remember watching it when I was young and thinking how cool it would be to be a "Barkers Beauty" showcase model. Drew Carey started hosting in 2007 and from what we saw today, he's doing a great job. He was really funny, especially during the commercial breaks. He would converse with the audience and tell jokes and stories.

Getting tickets is easy, waiting to get into the studio is the hard part. If you ever go, bring a jacket and your patience. 

Our tickets said to arrive at 12pm, so we got there at 11am because we knew the lines fill up fast. They only take 300 people per taping. The first hour was spent standing on the street, in a looonnggg line, outside of the CBS lot. Even with a ticket, there is no guarantee that you are going to get in. So around 11:45 I approached the only person who looked like they had any authority and I told her a little white lie. I said I was being induced in 2 days and this was the only day we could see the show. She granted us admission right away. YAY, we're in the gate!

Even though we were on the lot by noon, we didn't actually get into the studio until 4pm. The waiting areas are covered, outdoor wind-tunnels with long benches.  Over the four hours we waited, we had access to a snack bar with tasty treats and a nice restroom. They even have a green screen set up where you can take souvenir photos (see below). Every audience member gets their photo taken by a staffer and has a short interview with a producer. This is how they select contestants.  When you get to the third and final waiting area they have TV's playing the show to get you pumped up.

Then finally, around 4pm we made our way into the studio. The set is SO MUCH SMALLER then you would imagine. We were seated on the right, third row from the back, towards the middle. I have an interior aisle seat next to the big $ platform in the middle of the audience.

SPOILER ALERT: we did not get selected :(

Our episode airs on 4/17 and if you look closely, you might see us when they pan the audience. Despite all the waiting around, we had a great day.

 

 

Observations: a week in Los Angeles

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First of all, let me say that I really like it here. I have spent quite a bit of time in LA in the past, but never for more than a day or two at a time. Being here for just over a week has allowed me to gain some new insight. Here are my observations:

Some of the stereotypes are true.

The drivers are awful, traffic is awful. I love to drive, but driving in this city makes me want to stay home. Everyone is in a rush and no one is paying attention. Bad drivers, no bueno.

EVERYONE is in the "industry." You can't walk down the street or sit in a restaurant without hearing about everyone's audition/script/agent/manager/blah/blah/blah. It is comical and kinda sad.  We can't just be a world full of actors. Someone (..hey, I'm not volunteering either) needs to do something productive and meaningful for society...

I use Yelp all the time, especially in a new city. Reading Yelp here is wildly entertaining/annoying. LA folks write their Yelp reviews as if they're auditioning screen-plays.

These are real yelp reviews:

Gorgy views and tasty sushsush make me a happy unagi.

These Burgers are JUICY ANGUS COUTURE!!! These are the juiciest burgers I've ever eaten hands down.   I mean your Mom and your friend in culinary school wish their burgers called you back for another like these handmade burgers do.

He showed me where to park and when to stop, guiding me through until I needed to step out. He opened the door for me as if I was some sort of celebrity and told me "I've got it from here...Go on inside, where we have some fresh brewed coffee & magazines!!!"   I looked at him a little confused (as I had not ever been greeted this way before at a Jiffy Lube) but he reassured me with that ear to ear smile and showed me the way to the relaxing waiting room (WITH FREE COFFEE!!!)