Constantly Adjusting

You know things have been pretty busy if it’s been over two months since a blog update. (And that means you’re in for about a bajillion pictures.) I soaked up as much of my maternity leave with the girls as I could and that left little to no room for writing. Once I went back to work nearly four weeks ago, the thought of sitting down to write pretty much went out the window. I’ve journaled on and off for most of my life, starting as early as elementary school. Writing helps me think, process, revise, grow and learn. During hard times, writing is definitely a form of therapy too. After Lucie was born, it was an essential part of how Rob and I coped through the more painful days. I have been longing to get on here and post some thoughts about the recent months, but it has been a challenge. Not just because there has been little time, but also because it has been difficult to think about what to write.

The past 12 months have been full of adjustments: Adjusting to a new role at work and a new pregnancy at the same time. Adjusting to a very high risk pregnancy. Adjusting to being hospitalized, and Rob essentially becoming a single parent for five weeks. Adjusting to having a baby in the NICU — again. Adjusting to being HOME together as a family of four (my heart swells to think about that). Adjusting to caring for an outpatient infant, juggling several follow ups with specialists, ongoing medications, and serious health concerns. Adjusting to raising another premie, and constantly accounting for her adjusted age. And now, adjusting to me being back at work.

It feels like we’ve rolled from one set of trying circumstances to the next. Each time, requiring a recalibration and a reassessment of how we go about our day to day, requiring us to constantly shift into a “new normal”. It has been challenging, painful, and tiring. At the same time though, it has brought about a lot of growth for us internally. We are not the people we were a year ago, we are not the family we were. We have changed, deep down, in our habits and personalities, we have grown closer to each other and closer to the Lord. I am truly thankful for all of this, and I know these changes wouldn’t have happened without the difficulties as well. Don’t get me wrong, I’m so ready for things to settle down some, but one major lesson I hope to take away from this season is to not let myself get stuck in a rut or pattern of comfort that stops me from growing even further still.

I’ll just add some general thoughts about this newest season and how each of us is doing.

Rob is in the depths of summer camps and clinics, and planning ahead for what the fall season will look like for Huddle Up NYC. During my maternity leave it was so exciting to be a partner and collaborator with him on new ideas. What a dream it would be to get to partner with him more in the future.

Lucie is the most tender, loving big sister. She has been a thoughtful and willing helper. Sometimes we even have to tell her that it’s okay and that she doesn’t have to help, so that she can enjoy time playing. She is about to finish her final month of preschool, and then she will transition into Kindergarten. Even though she will be one of the youngest to enter kindergarten, not turning five until mid-December, I am hopeful that the school she will be in will prove to be a supportive and nurturing environment for her that helps her continue to thrive. She will be in an integrated classroom, which means she will have a General Ed teacher and a Special Ed teacher, and she will continue to receive Physical Therapy and Occupational Therapy at the school. It was decided that she will no longer be receiving Speech Therapy once she enters kindergarten and we are so thrilled by her amazing progress. Her school will only be a block away, and the start time is earlier than her preschool, so I am looking forward to being able to drop her off before work in the mornings while Rob will plan on picking her up each day.

I am back at work, and thankful to have such a supportive team. The first week was extra tough for me, but since then, I think Lucie has had the hardest time with the transition. When I get home, we really just have about an hour for dinner together as well as Lucie’s bath and bedtime routine. It’s so condensed and sometimes it’s hard for Lucie to express herself and how she’s feeling, especially near the end of the week when she’s extra tired. We’ve been trying to make sure mornings have plenty of time where we can focus on her and play with her, so that she feels that connection to us still.

Felicity is just the sweetest little 6 month old/ 4 month old adjusted age. We are getting more smiles every day, sometimes even little laughs. She is receiving Physical Therapy, Occupational Therapy and Special Instruction Therapy; all from therapists that worked with Lucie from when she was 6 months old to when she was 2 1/2. She is growing, but still quite tiny at just over 9 lbs, (most of which I think is in her cheeks, lol). All of the specialists that follow her are pleased with how she’s doing. Her eyes are improving, which is great! Her heart is unchanged, no better and no worse. So for now, her heart will continue to be treated through medication, although her Cardiologist expects she will require surgery sometime in the next year or two. Her Endocrinologists have made small tweaks to the mix of steroids she must take daily to manage her adrenal deficiency and she is continuing to do extremely well. As we have become more and more educated about her genetic condition, it is both helpful and nerve wracking at the same time. We’re praying that we can support her well, and not have to learn the hard way if and when we need to make adjustments to her medications during illnesses. If she doesn’t receive the cortisol her body needs to fight an illness through giving her additional does of her medicine, called “stress doeses”, she could quickly spiral into an adrenal crisis requiring hospitalization. Since this is a lifelong condition, not one she will grow out of, we know that as we all get more experience we will gain a greater level of comfort in helping her manage it. From what we have read, the first 3-5 years are the toughest because parents are still getting used to how to treat it during an illness (the most critical time). Day to day, while she remains healthy, it’s a breeze. She is strong, rolling over from her back to her tummy often, and preferring to sleep that way as much as we will let her. She loves to be held, and if she could be snuggled 24/7, she’d be in heaven. She might be the world’s greatest cuddler.

Thanks for reading along, here are some pictures from the last couple of months if you’d like to see.

With love,

Los Hicksons

Hard to believe we have been living in NYC for ten years now. Raising two fierce little ones and starting a business - all things we never thought we’d pursue while living here. We thought, start a family in NYC? No way, that’s too hard. Start a business in NYC? That’s got to be even harder. Well, it has NOT been easy, that’s for sure. But it has been truly rewarding, and an incredible journey so far.

Hard to believe we have been living in NYC for ten years now. Raising two fierce little ones and starting a business - all things we never thought we’d pursue while living here. We thought, start a family in NYC? No way, that’s too hard. Start a business in NYC? That’s got to be even harder. Well, it has NOT been easy, that’s for sure. But it has been truly rewarding, and an incredible journey so far.

Two sisters in hearts <3

Two sisters in hearts <3

Decorating a memory box to hold pictures of Felicity from her time in the NICU

Decorating a memory box to hold pictures of Felicity from her time in the NICU

Playing with one of her besties, Nat, in our favorite place in all the land. CENTRAL PARK.

Playing with one of her besties, Nat, in our favorite place in all the land. CENTRAL PARK.

We got to see P!NK in concert, she spiraled all around Madison Square Garden, it was so fun!

We got to see P!NK in concert, she spiraled all around Madison Square Garden, it was so fun!

Meanwhile, big sister Lucie was excited to have Clayton and Melanie over to babysit her and Felicity.

Meanwhile, big sister Lucie was excited to have Clayton and Melanie over to babysit her and Felicity.

Getting her haircut by daddy’s barber around the corner is one of her favorite things.

Getting her haircut by daddy’s barber around the corner is one of her favorite things.

Flossing… another one of her favorite things. “The Dentist told me to floss every day!”

Flossing… another one of her favorite things. “The Dentist told me to floss every day!”

More fun times in Central Park

More fun times in Central Park

Escaping a sudden rain storm that interrupted a perfectly nice picnic in Carl Schurz.

Escaping a sudden rain storm that interrupted a perfectly nice picnic in Carl Schurz.

TITI ELI CAME TO VISIT

TITI ELI CAME TO VISIT

Lucie liked getting to show Titi Eli how we get our groceries every week

Lucie liked getting to show Titi Eli how we get our groceries every week

Being silly - Lucie would say, “I can’t stop laughing!” And then just laugh and laugh and laugh.

Being silly - Lucie would say, “I can’t stop laughing!” And then just laugh and laugh and laugh.

Lucie leading her ballet class. She had them jumping and doing the silliest moves, in her mind though, I think she felt like she was genuinely leading the class in perfect ballet movements. She rocked!

Lucie leading her ballet class. She had them jumping and doing the silliest moves, in her mind though, I think she felt like she was genuinely leading the class in perfect ballet movements. She rocked!

Excited to show off her costume for her first ballet recital.

Excited to show off her costume for her first ballet recital.

Rob and Lucie went on a Daddy-Daughter trip to Florida for a long weekend

Rob and Lucie went on a Daddy-Daughter trip to Florida for a long weekend

Meanwhile, Eli, Felicity and I stayed in NYC and had Mint Chocolate Chip shakes from Baskin Robins like we used to when we were little. Our grandpa in Puerto Rico would ask us if we wanted to go visit our friend, Mr. Robin’s store, and he’d treat us to yummy ice cream. Such genuinely sweet memories then and now.

Meanwhile, Eli, Felicity and I stayed in NYC and had Mint Chocolate Chip shakes from Baskin Robins like we used to when we were little. Our grandpa in Puerto Rico would ask us if we wanted to go visit our friend, Mr. Robin’s store, and he’d treat us to yummy ice cream. Such genuinely sweet memories then and now.

Riding the city bus like a champ

Riding the city bus like a champ

lol

lol

Baby’s first trip to Target

Baby’s first trip to Target

Baby’s first trip to The Met

Baby’s first trip to The Met

so cultured

so cultured

Cutie

Cutie

Seeeesters

Seeeesters

Down in the 305, Lucie and her cousins played and played and played some more

Down in the 305, Lucie and her cousins played and played and played some more

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Addi and Lucie matching, with hair styled by Titi Crystal

Addi and Lucie matching, with hair styled by Titi Crystal

Lucie and Papa

Lucie and Papa

Looking through old photo albums with Papa

Looking through old photo albums with Papa

Playing the “pa-i-no”

Playing the “pa-i-no”

KNOCK IT DOWN!

KNOCK IT DOWN!

Tire swing fun with Michael

Tire swing fun with Michael

Playing in the rain

Playing in the rain

Fun morning swimming at a sweet friend’s pool

Fun morning swimming at a sweet friend’s pool

Back in NYC and ready for her first recital

Back in NYC and ready for her first recital

Lucie was SO brave on stage. She was the youngest dancer in the whole program that afternoon and spent her time on stage smiling at the audience, mostly standing still, and happily switching rows on cue.

Lucie was SO brave on stage. She was the youngest dancer in the whole program that afternoon and spent her time on stage smiling at the audience, mostly standing still, and happily switching rows on cue.

Proud of our brave girl!

Proud of our brave girl!

Walking home after the show

Walking home after the show

Celebratory ice cream, because it’s us, and that’s what we do!

Celebratory ice cream, because it’s us, and that’s what we do!

Our other brave little one at her monthly cardiology appointment.

Our other brave little one at her monthly cardiology appointment.

While Felicity and I were at the cardiologist, Lucie and Rob got to go on a field trip to the Fire Department in our neighborhood with her school.

While Felicity and I were at the cardiologist, Lucie and Rob got to go on a field trip to the Fire Department in our neighborhood with her school.

Lucie in her fire chief costume in front of the Fire Engine!

Lucie in her fire chief costume in front of the Fire Engine!

So exciting! When she grows up, she still says she wants to be a Firefighter, and to that list she has also added: Policeman, Ballerina, and Princess. She’s very well rounded.

So exciting! When she grows up, she still says she wants to be a Firefighter, and to that list she has also added: Policeman, Ballerina, and Princess. She’s very well rounded.

What’s Lucie doing in winter clothes in the middle of summer? Oh wait, that’s not the real Lucie... the real Lucie decided to hide under the dishwasher door. She is the silliest.

What’s Lucie doing in winter clothes in the middle of summer? Oh wait, that’s not the real Lucie... the real Lucie decided to hide under the dishwasher door. She is the silliest.

We ran into the Family Life coordinator from the NICU on our walk home from Central Park one evening. It’s nice to get to keep in touch with so many of the kind people that supported us while Felicity was in the NICU.

We ran into the Family Life coordinator from the NICU on our walk home from Central Park one evening. It’s nice to get to keep in touch with so many of the kind people that supported us while Felicity was in the NICU.

Making pancakes with Daddy-O.

Making pancakes with Daddy-O.

Another day scooting her way to the Park

Another day scooting her way to the Park

We’re starting to get more and more smiles, and even some laughs these days.

We’re starting to get more and more smiles, and even some laughs these days.

So cozy in her favorite nurse’s arms

So cozy in her favorite nurse’s arms

Felicity getting some morning PT in. She is getting SO STRONG. Look at that head control.

Felicity getting some morning PT in. She is getting SO STRONG. Look at that head control.

Lucie’s preschool goes all the way through the summer, but she has the last week of June and the last three weeks of August off. Her June break coincided with my last week of Maternity leave, so it was really nice to get in a lot of great time with both of the girls before I went back to work.

Lucie’s preschool goes all the way through the summer, but she has the last week of June and the last three weeks of August off. Her June break coincided with my last week of Maternity leave, so it was really nice to get in a lot of great time with both of the girls before I went back to work.

Meeting up with Marci and her son in the park, she used to give Lucie Speech Therapy.

Meeting up with Marci and her son in the park, she used to give Lucie Speech Therapy.

Look what I can do, guys!

Look what I can do, guys!

We discovered some fun sidewalk chalk art on our way to the library one morning.

We discovered some fun sidewalk chalk art on our way to the library one morning.

Enjoying an afternoon making friends with several cats and kittens at the Meow Parlour Cafe.

Enjoying an afternoon making friends with several cats and kittens at the Meow Parlour Cafe.

Purrrrrrr

Purrrrrrr

This cat really wanted to share Lucie’s snack with her.

This cat really wanted to share Lucie’s snack with her.

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Lucie came home one day saying she loved Iron Man and Harry Potter and asked if we could read some Harry Potter. I asked her how she knew about them and she said she learned in school. It must have been from another kiddo or something, but I was more than happy to oblige. We made it about five pages in over the course of 3 days. Looking forward to when she’s a bit older and she can really enjoy the stories with me.

Lucie came home one day saying she loved Iron Man and Harry Potter and asked if we could read some Harry Potter. I asked her how she knew about them and she said she learned in school. It must have been from another kiddo or something, but I was more than happy to oblige. We made it about five pages in over the course of 3 days. Looking forward to when she’s a bit older and she can really enjoy the stories with me.

Ice cream on a hot day

Ice cream on a hot day

Lucie’s costume from her ballet recital fits her big bear so the bear is permanently in costume now.

Lucie’s costume from her ballet recital fits her big bear so the bear is permanently in costume now.

Even though ballet classes have ended, Lucie still loves dressing up to practice at home.

Even though ballet classes have ended, Lucie still loves dressing up to practice at home.

I made this little board to help us easily update each other and Aly on how Felicity was doing for the day. Translating the corners, the top left corner meant, “happy or fussy”, top right meant, “hungry bear or peckish pigeon” (Rob’s idea =)), bottom left meant, “sleepy or ready to party”, and the bottom right is self explanatory. We used it for about two weeks after I went back to work, and it was really helpful to get us in to the new rhythm of care.

I made this little board to help us easily update each other and Aly on how Felicity was doing for the day. Translating the corners, the top left corner meant, “happy or fussy”, top right meant, “hungry bear or peckish pigeon” (Rob’s idea =)), bottom left meant, “sleepy or ready to party”, and the bottom right is self explanatory. We used it for about two weeks after I went back to work, and it was really helpful to get us in to the new rhythm of care.

Lucie so excited to show us her creation

Lucie so excited to show us her creation

Pool day in New Jersey at my cousins amazing home

Pool day in New Jersey at my cousins amazing home

Brave little one

Brave little one

Such a fun day. It felt like we were away on a vacation.

Such a fun day. It felt like we were away on a vacation.

Even Bess had a blast. She wore her paws down from all her running around though, so she spent the next week looking like you’ll see in the next picture.

Even Bess had a blast. She wore her paws down from all her running around though, so she spent the next week looking like you’ll see in the next picture.

Pa-the-tic…

Pa-the-tic…

Enjoyed a great lunch getting to see two dear friends - and loved so much coincidental yellow.

Enjoyed a great lunch getting to see two dear friends - and loved so much coincidental yellow.

Posing like John Mayer in his video for New Light

Posing like John Mayer in his video for New Light

We flipped Lucie’s bed around and turned it into a loft. Her room has so much more space for playing now. When I asked her if she liked it, she said, “Mom, I LOVE it!” =)

We flipped Lucie’s bed around and turned it into a loft. Her room has so much more space for playing now. When I asked her if she liked it, she said, “Mom, I LOVE it!” =)

Sweet little Felicity after a bath

Sweet little Felicity after a bath

“Mommy, I made your bed!” She has become the most thoughtful helper.

“Mommy, I made your bed!” She has become the most thoughtful helper.

“And look, I made my bed, too.”

“And look, I made my bed, too.”

A mid-week play date with a friend Lucie made in her ballet class.

A mid-week play date with a friend Lucie made in her ballet class.

At Lucie’s End of Year Celebration in her class she was given the “Most Amazing Storyteller” award. I got teary eyed hearing the teacher explain how much rich language Lucie has developed and how she has come such a long way from her shy self at the beginning of the year. It’s incredible to see that growth and we’re beyond thankful to know that her therapists have expressed she no longer needs Speech Therapy going forward as she is on par with her peers and even a bit ahead. Such a miracle.

At Lucie’s End of Year Celebration in her class she was given the “Most Amazing Storyteller” award. I got teary eyed hearing the teacher explain how much rich language Lucie has developed and how she has come such a long way from her shy self at the beginning of the year. It’s incredible to see that growth and we’re beyond thankful to know that her therapists have expressed she no longer needs Speech Therapy going forward as she is on par with her peers and even a bit ahead. Such a miracle.

They followed up the awards with a “graduation” certificate and a fun cap that Lucie had designed herself.

They followed up the awards with a “graduation” certificate and a fun cap that Lucie had designed herself.

Oh, good morning princess batman. This is how Lucie chose to wake us up one morning.

Oh, good morning princess batman. This is how Lucie chose to wake us up one morning.

Rob and I were in our room trying to install a new window A/C and Felicity was crying in another room in her bassinet. We couldn’t get to her, but then realized the crying had stopped. When Rob went to check on her, he found big sister Lucie soothing and calming Feli down. Lucie gave Felicity the pacifier, put the yellow toy on her chest, and sang a song while shaking the rattle. &lt;3

Rob and I were in our room trying to install a new window A/C and Felicity was crying in another room in her bassinet. We couldn’t get to her, but then realized the crying had stopped. When Rob went to check on her, he found big sister Lucie soothing and calming Feli down. Lucie gave Felicity the pacifier, put the yellow toy on her chest, and sang a song while shaking the rattle. <3

Bubbles in the park

Bubbles in the park

The littles

The littles

The bigs

The bigs

Monkeying around in a subway car all to ourselves. Whenever we take the train and have the stroller with us, we take the elevator from the street to the first level, and then take another elevator down to the platform once we’ve gone through the turnstiles. Any time it’s just us in the elevator we have a dance party. As the elevator doors close, when she can tell nobody else will be joining us, Lucie hypes us up be going “Aaaaaaaaaaaa…” followed by a chorus of, “Dance Party! Dance Party!” Sometimes we get to have a Dance Party in both elevators on the way down, and then on both elevators when we are getting out. FOUR DANCE PARTIES!

Monkeying around in a subway car all to ourselves. Whenever we take the train and have the stroller with us, we take the elevator from the street to the first level, and then take another elevator down to the platform once we’ve gone through the turnstiles. Any time it’s just us in the elevator we have a dance party. As the elevator doors close, when she can tell nobody else will be joining us, Lucie hypes us up be going “Aaaaaaaaaaaa…” followed by a chorus of, “Dance Party! Dance Party!” Sometimes we get to have a Dance Party in both elevators on the way down, and then on both elevators when we are getting out. FOUR DANCE PARTIES!

Rob had Lucie try on some new swag for Huddle Up NYC. This past week, we celebrated HUNYC’s 4th year! We couldn’t be more thankful for how HUNYC continues to grow.

Rob had Lucie try on some new swag for Huddle Up NYC. This past week, we celebrated HUNYC’s 4th year! We couldn’t be more thankful for how HUNYC continues to grow.