1 month

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1 month ago today, Santiago Banks was born.

It's amazing how one little life can impact so many others.

The past four weeks have gone by fast and slow all at the same time. Some days flew by and then there were hours when time stood still, like during his surgery. We have been on a roller coaster of emotions. Overwhelmed with happiness meeting our son for the first time, soon followed by sadness and heartache knowing what challenges he would have to face. I don't know how a newborn knows how to be brave, but he knew. He didn't just face major challenges in his first month of life, he conquered them. He is amazing! And now he's home!

He steals our hearts a million times a day, with every expression and funny face he makes.

 Happy one month Birthday little love!

 

Bath Time

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At the hospital, the nurses gave Santi his bath around midnight every night. He was always fussy and seemed to hate getting a bath. His first few days at home I continued with their routine, giving him his bath after his 11pm feeding. He would get so upset! I decided to switch it up and bathe him in the morning after his 11am feeding.

Ahh, much better!! Now he loves bath time and I love seeing him happy!

48 hours

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Santi has been home for a total of 48 hours and we are all doing great.

The first night was rough. The combination of adrenaline, no sleep, figuring out how to set up all of Santi's accessories in the most functional way and then needing to leave the house by 8am Friday morning for his first pediatric check up, left Abe and I very sleepy, but we did it.

Last night was much smoother. Abe and I both napped in the afternoon which made the overnight feedings a lot better. We changed Santiago's nasal cannula during bath time. While he was without oxygen, we hooked up his pulse ox so we could monitor his sats and heart rate. Santi did so great. He was without oxygen for about an hour and his sats were perfect, 79-83 and his heart rate was perfect too. Hopefully we can wean him off oxygen within the next few weeks.

Finally photos without tubes!

 

 

Having him home is the best. He is so sweet and cute and such a good baby! We are in awe of him, his strength and his charming personality. I truly believe that he can feel the love that all of you, our friends, family and even strangers have been sending him. We couldn't have gotten this far without all of your love and prayers. THANK YOU!

Please keep it up. We need to keep him healthy this summer until his next surgery.

Santi's Homecoming

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On 4/12/12, after 20 days in the hospital, we finally got to bring our baby boy home!

Exciting? YES! Scary? OMG YES! Knowing that this little guys life is literally in our hands is so intense. More so than bringing home a healthy newborn. We have to make sure he's getting enough oxygen, enough food and that his sats (blood oxygen saturation) stay within his normal range (75%-85%). We were sent home with O2 tanks and a Pulse Ox monitor. He is on .25 of a liter of oxygen continuously and we check his sats 3 times a day.

 

When we told Santi he was coming home he was like, "oh my gosh you guys! Are you serious?!" Abe made a shirt to commemorate the special day.

 

We can't get enough kisses

 

Getting loaded into the car seat

 

Here we go! ByeBye CHLA!

 

Welcome home Santiago Banks!

 

Big sister Stella checking out her new brother

 

Enjoying the sights and sounds of his new environment

What's missing?

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The photo on the left is from Monday morning and the photo on the right is from today. So, what's missing?
...his NG tube! The feeding tube that went from his nose to his belly was removed on Monday afternoon! Hooray!

He is eating like a champ. Taking 55-70 mL's every 3 hours. We are still working on nursing, but the majority of his meals are my milk fortified with a little bit of high calorie formula.

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 :)

 

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.

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.

 

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.

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.