Benton has Teeth!!!!!

Big development in Benton's world.  He got his two bottom teeth in quick succession.  He is crazily possessive of his teeth and doesn't like to show them off so getting a picture of them has been quite difficult.  So here's the only pictures we have thus far:

Starting to get teeth!!!  Still smiling though :)

Teeth coming in but not happy about it!!!!

Merry Christmas: Benton starts crawling!

On Christmas Eve we got the most amazing gift of all - Benton started crawling :)  It's so wonderful to see Benton starting to move independently.  Watching him take his first "crawling steps" was one of the most magical things I have ever witnessed.  We all cheered him on as he kept showing off his new skill.  At this point Benton has just figured out how to move his hands forward in crawling and still needs a bit of help moving his knees.... if he doesn't get help with his knees his hands move forward so fast that his knees just can't keep up and he looks like an inchworm. :)

As part of our Christmas Eve tradition each person opened a present on Christmas eve.  Benton's toy was awesome - a remote controlled piggie that he could chase while crawling.  We were in hysterics watching him play with his new found toy.

Happy Thanksgiving! A Day of Giving Thanks

This Thanksgiving was an amazing celebration and a day to truly give thanks for our multitude of blessings.  Unlike last year, this Thanksgiving wasn't a day filled with trepidation and trips to the NICU, it was a day filled with joy, food and fun with Benton at home.  As it was Benton's first Thanksgiving at home it was obviously a tremendously special day.  We counted our blessings and said thanks for the amazing year we have had and the fact that we were getting to spend this Thanksgiving with our beloved boy.  As I looked around our Thanksgiving table, I knew we were witnessing a very special moment - our first holiday meal as a family!

Pictures from Thanksgiving Week

Our big boy!

For Thanksgiving we decided to make a massive feast in celebration and have a couple of friends over for board games, fun and food.  We made turkey, mashed potatoes, sweet potatoes, brussel sprouts with cranberries, gorgonzola and pecans, chorizo cornbread stuffing, apple onion stuffing, homemade cranberry relish, popovers, deviled eggs, pumpkin custard, chocolate bourbon pecan pie and glazed pumpkin bread.  Whew!  With so much cooking it was fun to have Benton join us in the kitchen watching us make delicious food and hang out in the living room with his grandparents.

Enjoying Thanksgiving with Friends

And Family!

The Starters: Deviled Eggs and Bourbon Apple Cider

The Feast

And Finally Yummy Dessert

Our Friends Catie and Lucas Giving Benton a Goodbye Hug

Thanksgiving was an amazing day.  A day full of blessings, fun and food and one we will never forget.  Thank you to everyone who has prayed for Benton and our family this past year.  We are forever thankful for those prayers because we know that Benton wouldn't be here without God's miracles and you are a part of his miracle by supporting our family and praying for our sweet boy.

Ready for Thanksgiving Football

P.S. As part of our celebration we decided to dress Benton up as a cute little turkey and take some family photos.  Enjoy!

Loving Grandma and Grandpa

Family portraits with our little turkey!

Riding on Daddy's Shoulders

A Year of Reflection on World Prematurity Day

Benton's one year birthday was just over a week ago and today is World Prematurity Day and if those two events don't deserve a moment of reflection on life's blessings I don't know what does.

6 days old during our first diaper change

Just over one year ago, I was faced with one of the scariest moments of my life...the premature birth of my beloved son, Benton.  Sitting in that hospital room hearing the odds of your baby's survival is something I would not wish on my worst enemy, yet there I was listening to spectacularly terrible odds that my baby would not make it.  5% chance of survival...and even if your baby lives there's still over a 90% chance of severe neurological impairment.  As the doctors paraded in and out of my room, they went over my options.  1) I could choose to abort my baby since it had so little chance of survival.  2) I could choose to give birth vaginally which would basically be a death sentence for Benton because of the traumatic nature of a vaginal birth on such a small micro-preemie; however, it would save my body from a hard recovery from a classical c-section and would allow any future pregnancies to be easier.  3) I could choose a c-section knowing full well that it was my best chance for my baby's survival but that even then it would likely not save my beloved baby and then I would have a much harder chance at getting and staying pregnant in the future.  I chose Option #3.  I wanted my son to have the best possible chance even if that meant that any future pregnancies might be compromised.

Benton's baptism day

I had made my decision - I would fight for Benton no matter what and hope and pray that God would provide us with a miracle.  That my baby would be part of that 5%.  Later I heard from friends who know OB-GYNs and they told me that the 5% chance doctors tell parents is really just to give them hope.  In reality almost no child ever makes it when they are born at 23 weeks.  I'm glad I didn't know that at the time, because I clung to that 5% chance like it was a lifeline.

On November 8th at 11:41am Benton Robert Bertram came into the world without a peep.  He weighed only 470 grams (1lb 0.5oz or the equivalent of 470 paper clips) and was only 11 inches long.  He wasn't breathing, his skin was almost gelatinous and he had bruises over a large part of his body due to a prolapsed cord.  The doctors told us he wasn't going to make it, but just 15 minutes later they came back and said he was breathing better on the ventilator and had stabilized.  Our miracle was at work.

So tiny and fragile

Over the next 200 days Benton proved that miracles truly do exist, and after 6 1/2 months in the hospital he finally came home.  Our hospital stay was definitely a roller coaster ride full of prayers in the hospital chapel, nights in the nesting room when it looked like Benton wasn't going to make it and days where I cried myself to sleep.  We were told 3 times that he wouldn't make it and it was time to say goodbye, but each time he came back from the brink.  No parent should ever have to say goodbye to their child.  It was a heartbreaking time, but miracles do happen.  The power of love is a miraculous thing. We believe that Benton is here with us today because of God's grace and the miraculous healing power he sent our son.

Each day I remember how lucky I am that my son is alive, thriving and healthy.  However, as Benton gets stronger and stronger its easy to forget how much he's been through in his brief life and how it still affects him to this day.  Benton is one year old now, but he can't crawl, walk or pull up on the furniture.  He can't eat a lot of solids by mouth because he was traumatized by his many intubations and he still aspirates his liquids so he is gtube dependent.  When you compare him to a "normal" one year old he is definitely behind, even if you were to compare him to others his adjusted age he still lags in certain areas.  But when you view his progress in relation to where he was when he was born and for what he has been through you realize that he is the most amazing little boy in the entire world.  Benton has an amazing love of life, he smiles constantly, enjoys sitting up and getting on his hands and knees, he loves babbling and squealing and playing with his toys.  We know that he will continue to thrive and reach his developmental milestones, it will just take time and patience.

To be completely honest, there are days that I look at Benton and wish he could just be normal.  I would love to not be in RSV isolation for all of cold and flu season.  I would love to have Benton get a cold and not end up in the hospital for the umpteenth time.  I would love to be able to have him play with other children at the park or even feel free to put him in a swing with the need to disinfect everything he touches.  I would love for Benton to be excelling at his developmental milestones and be crawling all over our house.  I would love to see Benton scarfing down food in his highchair during family meals.  I would love to feel free to travel and visit my family with Benton for the holidays, but flights are off limits for kids on oxygen.  I would love to feel free to bring Benton on daily errands so as to not feel homebound by his oxygen tanks, monitors and feeding equipment.  But that is not my reality and most days I am okay with that.  There are moments when I throw myself a pity party, but I know that I am so incredibly lucky to have an amazing son like Benton.

Smiling happy Benton today

Despite all of the challenges our family has faced this past year, I consider us one of the luckiest families in the world.  We have an unbelievable son who fills our hearts with joy and melts our hearts with his smile.  We have the promise of many more wonderful years ahead with our energetic son.  We have had the support of countless friends and family all over the world - without their support I'm sure we would have crumbled in the face of so many obstacles.  We have had the best team of doctors and nurses taking care of Benton without whom Benton would surely not be here today.  We are forever blessed and today on World Prematurity Day I feel the need to say "THANK YOU"!!!! Thank you for following our story, thank you for sending prayers and love to our wonderful son, thank you for caring about the plight of premature babies, thank you for supporting our family in our time of need, thank you thank you thank you.  And now I'm going to go kiss and hug my precious preemie who has defied all odds to be here with me today.  He amazes me today and will amaze me for the rest of his life.  And I thank God for all the miracles that have brought us to this point today.

Happy 1st Birthday Benton!!!

Family portrait on his birthday!!!!

Today Benton hit a major milestone.  He turned 1!!!!! For an ex-23 week preemie, that is pretty much an unbelievable accomplishment.  Today we celebrate the amazing strides of modern medicine that allow our beautiful boy to be with us today.  In one year Benton has conquered unbelievable odds and has thrived at home.  He now weighs 19 1/2 lbs and is over 27 inches long!!!!  

Opening Presents!

To celebrate his big day we had cupcakes and a small family gathering to open presents and smash cupcakes.  To start off the big day Benton had his first cupcake which he was not super keen about.  He pretty much just wanted to smash the cupcake with his first present.  As he opened up his bountiful presents Benton was more interested in the wrapping paper and the boxes than the gifts themselves!  It was a very special day and we definitely felt the love from all of our family and friends who sent Benton tons of gifts.  

Here are some pictures and videos from his special day!

Happy Halloween!!!

Happy Halloween from the Bertram Family!!!!  Yee haw from a cowboy clan!

Family selfie

Giddy Up Cowboy!

Yay!  My first Halloween onesie

Going on a Halloween walk

Blowing Kisses and Squealing!!!!

Here are a couple of cute videos of Benton showing off his newfound skills.  He loves to blow raspberries (aka kisses) and has started squealing in delight.  Enjoy!

A Month of Colds, Sniffles and Sore Throats

All smiles before the cold

October was a month lost in the Bertram family....a month lost to colds, sniffles and sore throats.  Starting at the beginning of the month I got a scratchy throat that developed into a terrible cold with a sinus headache and lots of congestion.  While I stayed away from Benton, tucked in an isolation chamber of my own making, sprayed everything with Lysol and wore a mask and gloves if I left my isolation room, my cold still unfortunately spread like wildfire.  First Joe got it, then Benton then Joe's parents.  We kept Benton away from whoever was sick at the time and we made it over two weeks before he himself succumbed to the cold.

Our little country boy

It was Benton's very first illness since we had brought him home from the NICU and boy were we freaked out.  We felt terrible that we had gotten him sick despite our numerous precautions and we were just hoping and praying that he would pull through his cold like a champ.  For 4 days Benton battled the cold at home.  We would suction his nose multiple times a day, help loosen his cough by sitting in a steamy bathroom and then check his sats.  His sats remained high for the first few days but as the cold dragged on his reserve couldn't hold.  On Day 4 of his cold Benton started to sat badly and require more oxygen.  Overnight he went from satting well on 1.25 liters to requiring 2 liters and still having trouble holding a decent oxygen saturation.  We called our pediatrician and we all agreed that with his history of pneumothoraxes it was safest to go to the ER.

Smiling through the sniffles

Once we were at the ER they administered a couple of breathing treatments, gave him some steroids to help his lung inflammation and took a chest x-ray.  Luckily there was no sign of pneumonia or lung collapse.  As we sat in the ER Benton continued to require more oxygen and eventually was admitted to the hospital requiring 3 liters.  Once we were in the hospital Benton continued to require more oxygen and was flirting with ICU status.  Luckily we were able to stay out of the ICU and only went up to 3.5 liters before they were able to start weaning him again.  After 4 days we were able to go home again!!!!  Benton had survived his first cold and luckily had not required ICU-level oxygen.  Yay!

First Step: Get an Xray, Next Step: Smile in your Hospital Gown

Hanging with Mommy at the hospital

Uncle Ryan came to visit

Playing despite the IVs and the cords

Enjoying the view while leaving the hospital

As we continued to battle this cold, Benton still had his usual appointments.  Here is a short breakdown of his appointments and how he is faring medically:

• Eye Doctor - His ROP is non-existent and they just need to check on him every 3 months or so to see how his eyes are developing.  Right now he is far-sighted so it makes it harder for him to see items up close so he may need glasses someday soon.  The doctor also noticed a lump on Benton's eyebrow (which we thought was a scar from the NICU) and said it looked to be a benign tumor....so now we have an appointment with the occular plastic surgeon.  Don't you just hate it when one appointment begets more appointments instead of less?!?!
• Pulmonology - Benton's lungs are pretty much the same.  We haven't been able to do much weaning and we are still stuck around 1-1.5 liters.  They did give him some lasix though.
• Cardiology - Benton's pulmonary hypertension is pretty much the same as well though it didn't look worse during his cold which is a great sign that he didn't have a pulmonary hyptension crisis.  It means his meds are working!
• Developmental - Benton's tummy time was deemed "atrocious" by the developmental pediatrician but she said it was understandable due to his lung disease and how much harder he has to work on his belly.  She also said that he has trouble with visual fine motor skills which means he has trouble tracking small objects and quiet objects.  So now we are giving him puffs and cheerios to play with so he can work on his pincher grasp.
• Surgery - Benton's surgical sites look great and are healing well.
• GI - Benton's  gtube  looks good and they have switched us from 6 meals a day down to 5 meals a day.  They are also happy with his weight gain since he is now a chunky 19.4 lbs!!
• Speech Therapy - After a month-long setback post-surgery Benton is now accepting spoons in his mouth again and we are starting small tastes of purees, yogurt and other fun items like lollipops.
• Physical Therapy - Benton is starting to be able to hold quadriped (getting on hands and knees) and hopefully he will start scooting soon.

Getting on hands and knees!!

PT time with Daddy

Yum! Fun with Food

Showing off his motor skills

With so many appointments and therapy sessions it feels like we are constantly on the move, but there is a light at the end of the tunnel.  After Benton gets his RSV vaccine and his one year immunizations we don't have any doctors appointments for almost one month!!!! Please pray Benton doesn't get any infections or require hospitalization again.  We are praying for his lungs to continue getting stronger, for his pulmonary hypternsion to disappear and for him to start eating better by mouth.   Thank you for the love and prayers.  Our little fighter continues to amaze and impress us everyday and we are glad you are a part of his journey.

What a dapper gentleman

Such a cutie

Reading his Halloween book with Grandpa