Thursday, June 15, 2017

Savoring Each Moment

Every now and then, in the midst of the daily hustle and bustle, I try to stop and reflect on how incredibly lucky I am.  I have two beautiful precocious children, a loving husband who adores us all, the support of family and friends, and a village of therapists/doctors/and specialists that care for every possible need my son could have.  I am blessed many times over.

Yet life has a way of rushing past us...not allowing us to savor each moment....instead they become a blur.  A blur of therapy appointments, daily work schedules, household chores and bouncing from meeting to meeting - assignment to assignment; the drone of putting out the garbage, washing the dishes, cleaning messy faces, and picking up an endless stream of toys strewn about the room.  But, in the midst of all that craziness is what life is all about - the daily joys of parenthood - which is something that if you don't stop and reflect on how miraculous and amazing each day truly is, you could easily take for granted.

So today I decided I wanted to reflect on all the things that amaze me about my sweet babies so that I never forget.  I figured I need to capture these thoughts and memories as babyhood/toddlerhood and honestly even the pre-school years seems to be going by in the blink of an eye.  These days Benton is 3 1/2 and Aurelia is already 15 months - I mean where does the time go?!?!

Don't let me forget...

Don't let me forget the ecstatic and slightly maniacal laugh that Benton makes every time he know he is doing something slightly naughty.  The joy in his eyes and the laughter that seems to jump from the bottom of his belly is something I hope he carries throughout his entire life.  I love how he knows he is doing something slightly naughty (from opening the gate to let his sister climb the stairs to jumping in our bed to running away when its time to potty) and wants you to come and find him so we can laugh together.

Don't let me forget my baby's soft chubby hands as they grip my finger or take my hand in theirs to rub my own face.  Aurelia and Benton have always loved playing with my hands and fingers acting as if they were the maestro and my hand was their instrument.  The little hands that graze my face as I nurse Aurelia to sleep or grab onto my arms to keep me close for just a minute more as she reluctantly lets go to drift off to dreamland.

Don't let me forget each baby's first bites of solids, their first sips of whole milk, and their first successful chews.  Even though both of my babies have had different paths toward solid foods - one more traditional than the other - I hope to never forget the pride and joy on their faces the first time they successfully speared a hotdog slice with a fork, spooned mac and cheese up to their awaiting mouth or took their first bite of ice cream.  Each step with Benton has had its challenges but that makes the reward all the more sweet.  And each challenge with Benton has made me appreciate every milestone with Aurelia even more.

Don't let me forget how each of them loves to be exactly like their mama and daddy.  From Aurelia's morning ritual of tearing apart my makeup drawer as I try to get ready, pretending to put on lipstick with my flavored chapstick and waiting the final spritz of perfume to say we are ready to face the day. To Benton trying on Joe's shoes and hat while running around buck naked before bedtime.  These are moments I treasure and know will be gone before I know it.

Don't let me forget how Benton waves his arms and hands with rampant excitement while watching a thrilling or humorous scene on one of his favorite videos.  While watching Lion Guard, Lion King, Lilo and Stitch, Little Mermaid or any other Disney film, Benton watches with rapt attention and with each exciting scene he jumps excitedly in his chair waving his arms as if to help spur the characters onward in the film's action-filled sequence.

Don't let me forget how Benton's simple hug and kiss for Aurelia could turn into a full out tackle and wrestling match.  Those two's love for eachother runs deep despite their rough housing which poor Aurelia often needs to escape from with a gentle screech or a call for Mommy's help.

Don't let me forget their pride when they successfully sit on the potty and make a pee pee or a poo poo.  Even though Benton has been potty trained for 5 months, each time Benton successfully goes he still gets this wonderfully proud expression and gleeful grin that only lasts a moment but lights up his whole face. Furthermore, Aurelia who is not yet potty trained wants to sit on the potty to be like her brother and proudfully shows me she can do it too!

Don't let me forget my superpowers.  My power to give magic kisses that can soothe the worst oowies, fix anything that is wrong and soothe every fear and worry.  I love when Benton asks me for the magic kisses and then happily announces "All Better" after he has received them.  I love that even when Aurelia is at her most upset she calms when she is hugged in close and slowly stops her hysterical crying in slow jagged breaths until she gently rests her head on my chest.

Don't let me forget how everything around us is of wonder to them...each tree..each bush..each flower.  Digging in the garden, watching helicopters fly overhead, playing in the dirt, finding a random stick, hugging a tree - each experience is new and brings joy and wonderment from both of my adorable kiddos.  I love how they like to point out each new item gently asking for clues as to its name and the reason for its existence.

Don't let me forget the joyous and infectious laughter that springs forth from Aurelia with each tickle. I love blowing raspberries on her belly and seeing her scrounch up her face in joyous laughter that emanates deep within her belly.  Her happiness is like a sunbeam radiating from her eyes and mouth.  That joy continues during marathon sessions of tracing "Going on a treasure hunt" on her and Benton's backs to the sound of neverending giggles.

Don't let me forget the latenight nursing sessions in the early months of Aurelia's infancy when the glow from our streetlamp would gently illuminate her perfect little face with its button nose.  Her insistent suckling giving way to long languid feeds that would end with the heaviness of her drowsy head dozing off in the crook of my arm.

Don't let me forget the excitement surrounding our nightly baths with yells of "Tubby, Tubby" echoed by both Aurelia and Benton.  Their little bodies so excited to hit the water that they would be climbing over the tub's walls clothes and all.  Aurelia would be trying to use the wash cloths to wash her face while Benton would use our tugboat pail to dump water on poor unassuming Aurelia.  Each bath ending with Benton's insistent words dictating which animal towel he would get and which would be Aurelia's.  PS. Benton would get the giraffe or frog while Aurelia got the ladybug or lobster. Their freshly bathed bodies wrapped in fluffy towels as we scooted them into bedrooms for pajamas and prayers. 

Don't let me forget the way it seems that both babies fit perfectly against my body.  Benton facing me with his arms wrapped around my neck and his legs clinging to me like a little monkey and Aurelia sitting perfectly on the curve of my hip.  Each one fits so perfectly and yet so differently.  

Don't let me forget how they yell "Mommy" when I arrive home from work and can't wait to be picked up and covered in kisses.  I love how Benton greets me with an ecstatic "Mommy" and then proceeds to try and pull me by my hand to get me to focus on whatever he cares about that day.  I love how Aurelia will yell "Dadda" even though she knows its mommy because she thinks that is the greeting you say when someone comes home :) and then immediately starts pulling on my shirt so she can nurse.

Don't let me forget the way each one pronounces certain words or phrases with their own inflection and creativity.  Aurelia loves to say "Crackoo" for cracker and Benton loves to softly sing "You are my sunshine" to me when he thinks I am mad or upset with him.  Benton's cheerful, spontaneous and impromtu singing bring me great bliss.  For a boy they weren't sure would be able to talk his exhuberant singing is a vision.

Don't let me forget their rhythm and first attempts at dancing.  After the methodical mimicry of nursery rhymes with "Wheels on the bus" and "Heads shoulders knees and toes" both kids have started to show some of their own original dance moves.  Aurelia loves to hold out one foot in a semi ballerina / line dance cowgirl move and then shake her arms wildly.  Meanwhile Benton likes to bop up and down and sway side to side.  These moves can be seen in our kitchen with dinner dance parties that end with fun-filled laughter. 

Don't let me forget every first - first steps, first words, first smiles, first laughs, first claps, first rolls, first foods, first waves and first hugs.  I hope that each first will never be forgotten as we know how precious each first truly is.  When you aren't sure of your baby's outcome in life you can't take anything for granted and each first is just proof that God's love is all around us - whether it be in the blessings that allow Benton to be here today or in the blessings that allowed Aurelia to be born healthy.  Each first is something to be treasured.

And finally don’t let me forget the way everything seems to glow as we lay in bed together on lazy mornings before coffee, before waffles. While they roll around with each other and giggle and squeal, I watch them, tiredly, proudly, gratefully, wondering by what stroke of luck these two were chosen to be mine.

As a a wise woman wrote:
"Don’t let me forget their littleness. Because sometimes, that littleness is what makes me wish they would just grow up faster, sleep for longer, be more independent, give me more personal space, give me some freedom and let me just do what I want to do, for once.  But it is that littleness–that precious, fleeting littleness–for which I will one day ache and yearn and desperately, dearly miss.  So while I have it now, let me bask in it that little bit longer, breathe them in that little bit deeper and hold onto them that little bit tighter, because who knows how quickly this sweet, sweet littleness will pass."
Don’t let me forget.

Monday, April 10, 2017

Siblings Loving Eachother

Here are some fun pictures and a video of Benton and Aurelia.  Honestly each day they get more excited about eachother.  Aurelia is obviously obsessed with her big brother and now that Aurelia is walking (as of February 26th!!!) Benton seems more excited about her as well as she is becoming more of a playmate :)

Siblings eating together!
Enjoying our first snow day!!!
Aurelia at 10 months and hanging with her bro
Fun in the ball pit!





Benton loves giving Aurelia a ride!!!


Posing with my cuties
Fun at the local park!
Hugs can turn into tackles :) Hahah
Springtime beauty at the Arboretum
Reading together
Racecar cart riding at Lowes
Family fun on Aurelia's big day!!!
Walking with Benton and her Grandpappy on her birthday
Family portrait!!
Can't wait to play together even when out and about :)
Life during potty training!!
St. Patty's day in Irish green :)
Riding Paya

Friday, April 7, 2017

Benton Amazes Me Every Day

A little Luck of the Irish on St. Patricks Day
This is going to be a short post and I'm sure I have much else to catch everyone up on in the life of the Bertram Family of Four...but today Benton amazed me yet again and I felt the need to capture my feelings live in this forum.

Today I came home ready to celebrate the fact that it was Friday and that meant the start of the weekend and fun with the kiddos.  As usual I started getting dinner ready for the kids and feeding them which is always a task in and of itself.  Having a three year old requiring assistance to physically eat his meal while trying to also get a one year old to cooperate and eat their food is difficult if you can't imagine.  While feeding Benton a lovely dinner of dumplings, meatballs, hummus and yogurt he began his usual antics of turning his head away, refusing to take another bite and generally just playing with his food and not eating anything that wasn't forced upon him.  Joe comes home and Benton immediately starts chanting "Want a video"...if you can't tell Joe can be a softy when it comes to giving Benton videos at meal time to help keep his caloric intake up :)  As I'm explaining that no we aren't going to be watching a video, it's time to eat dinner, Benton looks at me and says plain as day "Mommy I want to go upstairs and watch a video."  I just about started crying.  That was by far the longest and clearest sentence he has ever said!

Obviously my willpower to keep videos away from my son after hearing those amazing words crumbled... However I stayed strong and explained to him that he had been naughty earlier so he wouldn't be getting a video on the iPad unless he could prove himself.  I told him he needed to finish the entire rest of the yogurt by himself and then help me clean up the table and then and only then could he watch a video.  He readily agreed and then my big boy did something else amazing - he fed himself over 20 spoonfuls of yogurt finishing it off and then got up and cleared the table bringing all the dishes to the sink.  I was pretty much in shock.  Not only had he spoken such clear words but then he fed himself the most I have ever seen him do using a spoon and readily took up a chore with no fussing at all.  The cherry on top was that when Joe came down later, I asked Benton what he had done to earn a video and he said "Eat the yogurt" and "Clean the table".  Wow just wow.

Today I am feeling incredibly grateful and blessed with the leaps and bounds Benton continues to do each and every day.  Even though some days are hard and challenging the joy of watching him succeed and progress by even the tiniest of babysteps is all so worth it!!!
My sweet little Irish cuties decked out in green!

Special Mommy - Son time at the Cherry Blossoms!
Benton deciding he should sit in the mud next to his name :) 
Handsome happy boy
Smiling happy Benton :)

Monday, January 2, 2017

2016 Recap of the Bertram Family of Four!

So it's hard to believe it's 2017 and over 8 months have passed since I wrote my last post.  It's a time for New Years resolutions and one of mine is to be better about keeping my blog up to date and not let life run away without capturing these moments.  Not only is blogging helpful so that I can better process my feelings but I also think it's important to showcase Benton's journey as other parents of micro preemies might want to know what life looks like 3 years post NICU.  So with that being said it's time to update the blog!!!
Aurelia + Benton = Twinsies!!!
Love these little love bugs
8 months is a long time so I have much to update you on-- I will give you both the short and sweet version and one with more of the twists and turns.  The short and sweet of the past 8 months is this- our little family of four is doing amazing - Benton got his gtube out in June, he is speaking more every day, and he is off all of his heart meds and now is only on asthma meds and a daily vitamin.  His progress is nothing short of a miracle.  In addition, we went on our first family airplane trip all the way to Hawaii for Christmas and it couldn't have gone better.  Aurelia is crawling, babbling and feeding herself.  God is indeed good.
Pure Happiness <3
First Time Playing Together
Getting Ready for Bed with my Two Little Loves
Now back to the long version :)

Adjusting to being a family of four definitely took awhile.  While Aurelia has seriously been an absolute angel sleeping well, not colicky, and latching easily it is always a seismic shift to welcome another member to your family unit.  After the first month when we were inundated with visitors it was time to settle into a new routine.   I was lucky enough to have a 5 month maternity leave and I wanted to truly know what it was like to be a stay at home mom of two and boy did I get that experience.  I have to hand it to every stay at home mom out there it is a tough job but also the most rewarding.  I cherish those moments every day now that I am back in the office.  Over the summer we took advantage of my maternity leave and took a road trip to Michigan (Aurelia's first trip out of state), headed to the Eastern Shore and went to the beach (both kids were not fans), enjoyed outdoor picnics and concerts, and even went to Annapolis to eat crabs.  All of these adventures helped not only solidify our family unit but also provided Benton the opportunity to truly explore his surroundings and go on adventures.

Our Trip to the Eastern Shore
Fun times in Annapolis :)
Not a fan of their first outing to the Beach
Starting in April we officially took Benton out of winter isolation and threw him out into the world.  now that he was mobile and had been off oxygen for almost 6 months we felt it was time to let him explore and get more socialized.  We began by taking him to the playground multiple times a week and enrolling him in a little music class.  Entering such new environments definitely put Benton outside his comfort zone.  Each trip to the playground would cause Benton to try and run away from the other kids and escape after about 5-10 minutes; with similar behavior at music class.  During this same period, I was also lucky enough to get him accepted into a Strong Start playgroup which has really helped him socialize better over the past months.  Despite his rocky start Benton has become much more socialized over the past 8 months especially since we hired a nanny (when I went back to work) who takes him out daily to storytime, playground playdates and many other activities with kids his age.
Our Handsome Boy
Participating in the Strong Start Playgroup
Since April he has truly blossomed in every possible way.  His speech which was really just some small babbling or silence in the early part of the year kicked into high gear around September and then in November went into overdrive.  Now it seems like every day he is saying more and more words, identifying everything in books and pictures, and has even started to ask questions and say random phrases like "whatcha doing mama, "oh boy"', and "correct" (if you pick out what he is asking for).  He also sings and knows all the words to dozens of nursery rhymes.  When his speech picked up in November I truly breathed a sigh of relief and honestly felt my shoulders unclench for the first time in the over 3 years since his birth.  I know it may sound silly but until that moment I was never sure he would have a "normal" or typical outcome in life.  For so many years I felt like I was waiting for the other shoe to drop...after your kid is born at 23 weeks and they tell you to say goodbye to him and his oxygen levels are below 50% for hours upon hours on end --- lets just say the odds for a typical childhood aren't good.  When Benton learned to crawl - I breathed a sigh of relief, when Benton learned to walk - I cried tears of joy, when Benton no longer needed a feeding tube-- I couldn't believe our unbelievable blessings, but throughout this all Benton wasn't talking and I guess I felt that might not change.  Despite the encouragement by his therapists, speaking was the last piece of the puzzle - the one thing that very much differentiated Benton from any other his peers NICU or otherwise.  Finally this Fall we saw real progress on this front and every day I am so grateful to hear him talk.  Every utterance is music to my ears, every new word a wonderful surprise and when he strings words together I can't help but cheer.  God is indeed good.
Family trip to Put-In-Bay, OH
Summer splash time
The last time I updated Benton was still on multiple medications each and every day with his most important medicine being his pulmonary hypertension medication for his heart (sildenafil aka viagra).  This medication used to mean the difference of being hospitalized and on a ventilator to being able to be off oxygen and at home -- very important if you couldn't tell :) Since January we had started weaning the sildenafil and by May our cardiologist was ready to pull the plug and fully wean off the meds.  We honestly couldn't believe it.  We were so ready to be off this med- it is incredibly expensive and our insurance is a pain in the ass to get it covered but we were always willing to jump through those hoops if it meant we had the medication and Benton could be home with us.  Well as the cardiologist said Sayonara!  As of May he went off his sildenafil and as of august we went back for a checkup to confirm his echocardiogram and EKG looked good despite the lack of medication.  All the tests showed that everything looked amazing and according to the doctors we don't even have to go back for one whole year!!!!!  With that medication weaned Benton now only takes his asthma medication for his chronic lung disease and a regular multivitamin.  Our little boy is truly amazing!!!
Spring Picnics
Aurelia Doing Tummy Time and First Time Sitting Up!
I'm almost forgetting one of the biggest updates of 2016....Benton got his feeding tube removed!!!!! Yes, you read that right he is tube free!  In one of my last updates I said he was no longer getting calories in his tube and by March/April they said we could even stop giving him water via the tube as he had learned to successfully drink from a straw and sippy cup.  Once we were no longer using the tube for calories or water it was just a matter of time before we could be tube free :) According to our GI we could pull the tube once we hadn't used the tube for 3 months and kept his weight up.  Well as of Late June we did a weight check and were given final permission to pull his gtube!!!  Now I know I should have been jumping for joy that day but honestly I was so incredibly nervous and excited - basically just a ball of nervous/excited/anxious energy.  While I couldn't wait for us to be tube free in theory the reality scared me.  What if Benton started losing weight and we couldn't supplement and he ended up needing another feeding tube or another surgery? What if Benton got sick and we couldn't help keep him hydrated? But at the end of the day Joe and I knew he was ready to take this big step.  What's funny is that while removing his gtube sound like a big scary ordeal in reality it took less than a minute.  We laid Benton down on his bed and simply deflated the gtube's balloon, removed the tube from his stomach and put a band aid on top.  By the next morning it was fully closed and had all but healed.  Now his stomach looks like he has an extra belly button or a dimple where the gtube button used to be but that is all that remains of such a major aspect of my son's early life.  It truly is unreal how something that affected every aspect of your daily existence can all of a sudden disappear.  Benton's feeding tube had meant that we had to bring feeding tube supplies (feeding pump, extra bags, formula, extra buttons, and syringes) wherever we'd go and often we would need to find secluded places in public to give him his tube feeds.  Now being tube-free we can just pack up his lunch just like you would for any other child-- what a weight that has been lifted!


The day the Gtube came out!!
Smiling since he is Gtube free :)
Other major developments: Since Benton was turning three we had to be reevaluated for therapy services by the D.C. Public School system which would also use the evaluation to create an IEP (individual education plan) for Benton once he started preschool.  During the evaluation Benton was a little wild.  He had been going through a stage (at least we hope it's a stage!!) where he liked to try and escape from rooms/park/music class/etc and also wasn't listening to directions very well.  This compounded with his delayed speech and his refusal to show off his fine motor skills meant that while we easily met the criteria to continue therapy services it also led the evaluators to recommend placement for Benton into a special education only classroom rather than an inclusion or general education classroom.  This did not make us happy in the least bit.  One of the main reasons being that Benton's therapists believe he needs to be around high performing peers to model good behavior and show off their speech and language skills so he can continue to make great strides.  Another reason being that the special education only classroom near our home is in a school that is not well respected on the Hill.  Not that it's a bad school but it's test scores are definitely lacking...it's an option but definitely wouldn't be my top choice.  After the evaluation we made the decision to keep Benton home working with his current speech, occupational, feeding and physical therapists for another year and potentially start pre-k in the Fall of 2017 when his cohort would normally start school.  We felt that if Benton was a typically developing kid he wouldn't start school until Fall 2017 anyway so why rush him especially since he was born premature.  As we approach this coming school year we will tour the schools and see what is a good fit and also see if he has made enough progress by the Fall to get placed in a general education or inclusion classroom.

Corn Maze at the Pumpkin Patch
Fun Times with Family
Pumpkin Festival at Butler's Orchard
Aurelia's turn at in the Pumpkin Bumbo
Getting ready for Halloween
The Family as Old McDonald's Farm for Halloween
Finally, in November we had Benton's latest pulmonology checkup as well as a hypoxic challenge.  The hypoxic challenge was to test how Benton would do a in a reduced oxygen environment like that of an airplane.  We were doing this test so we could travel to Hawaii for Christmas for our first big family vacation!!!  Well the hypoxic challenge was very interesting- first they tried to put a hood over Benton's head but he was having none of that.  Then they put a mask on his face and pumped 15% oxygen into the mask (rather than the 21% of normal room air).  Throughout the test, the staff took pulse oximeter readings every minute for 20 minutes and then took the mask off and tested Benton's oxygen levels as they rebounded post-test  Benton did amazing!  He had baseline oxygen levels of 95-97 and when taking the test his oxygen levels only dropped to 92.  Even though he had such a great showing during the test his pulmonologist couldn't say that Benton absolutely wouldn't need oxygen on the flight since the test was only 20 minutes and we would be in flight for 12 hours.  Overall Benton's lungs are doing the best they ever have and so while we are allowed to fly his pulmonologist ultimately recommended we bring oxygen on board our flight.  Good thing he did because while Benton did well on the two 5.5 hour sections of the flight he couldn't keep his oxygen levels up on the direct flight home so we eventually ended up using our portable oxygen concentrator in flight.  Even though it was a pain to carry a portable oxygen concentrator, supply bag and pulse oximeter along with the plethora of other items you need to carry when bringing two kids on board a 12 hour plane ride (we brought everything but the kitchen sink!), the plane ride was so incredibly worth it because we got to arrive in beautiful Hawaii!!!!
Benton's Third Birthday!
Our two week holiday in Hawaii for Christmas was one of the best of our lives.  Benton and Aurelia got to try out swimming in Tutu and Grandpappy's pool, we went on daily adventures and checked out the beach, saw friends and family and ate tons of yummy food.  Aurelia and Benton got to really know their cousin Sunny and Sunny and Aurelia got along famously.  I can't wait to watch them all grow up together!


Overall the past 10 months there have been huge changes for our family.  We have welcomed a new member to our family, Benton has made massive strides across so many fronts, and we went on our first major family vacation.  2016 could not have been more exciting and amazing for our family and we hope for continued progress in 2017.  I started this blog post talking about New Years resolutions and keeping this blog more up-to-date is one of my New Years resolutions I plan to keep so please check back for future updates.

Some more fun pictures of our family :)
The many smiling faces of Aurelia

The Happy Faces of Benton
Aurelia loving on Indiana and making her duck face
Summer fun with this little lady
Adventures at the Arboretum
Fourth of July family photo op
Fun at Hidden Lake Gardens in Michigan
Watching their first Michigan Football game
Fall Apple Picking

Turkey on a 4x4!


Thanksgiving = baby in a turkey costume


Matching Christmas Jammies!!!