Surgery 2.0

It has been known for awhile that Benton would ultimately need surgery to remove his dermoid tumor above his eyebrow, but we had always thought we could wait until this upcoming summer.  Unfortunately once we heard that his hearing was ultimately being affected by the fluid buildup behind his ears, our ENT recommended that ear tubes should be placed sooner rather than later.  So surgery was moved up to December 18th.  Luckily both of his doctors agreed to do their separate procedures in the same surgery.  This would help Benton have a quicker recovery time and less chance for complications with the anesthesia.

Waiting to be taken back for surgery

While we knew that these procedures would be beneficial for our sweet little munchkin, I couldn't help but worry about the intubation.  As you may remember last September a little over a year ago, Benton had surgery for a gtube and circumscion.  Those surgeries went beautifully but Benton did not react well to being extubated post surgery and needed high flow of 12!  I couldn't help but worry that Benton would lose all of the amazing progress he had recently made in coming off the oxygen both day and night.  Each night leading up to the surgery I prayed and worried and worried and prayed.
Luckily on the morning of the surgery I felt peace.  I knew everything was going to be great.  Benton had the first surgery of the morning and we were quickly whisked into pre-op where we answered an endless stream of questions and filled out paperwork.  Then surgery was set to begin.  After half an hour the ENT doctor came out and told us the ear tubes were a success.  She was able to put them in and drain the fluid from his ears and also was able to do a bronchoscopy and examined his airway.  After another hour our occular plastic surgeon came out and told us the surgery on his tumor was a success as well.  The tumor had been fat and scar tissue and he was able to remove all of the fat.  As we were thanking God for a successful surgery we were called back to the recovery room.

Post-surgery still out from the anesthesia

As we rushed to recovery to see our little man, we came upon his room with several doctors hovering.  Never a good sign.  Luckily they were just afixing an oxygen mask to his face as he had experienced some atelectasis (i.e. small pockets of lung collapse).  This was exactly what I had worried about!  Joe was able to calm me down and showed me the oxygen wasn't nearly as high as last time and they were still planning to send us home that very day.  As we sat with Benton he awoke groggy and out of it and we began comforting him - this was the moment I felt relief.  Our little boy was okay.  He had made it through surgery yet again.  As we sat with him and gave him juice I will admit that I was still unconvinced they were going to let us leave since Benton was still requiring a small amount of oxygen.  But luckily half an hour before our scheduled discharge Benton was able to come off the oxygen.  Thank God for these blessings.

Heading home from the hospital and showing off his stitches!

Benton was able to come home the same day from surgery and wasn't requiring oxygen!  Every single day this little man amazes me. What a wonderful Christmas present to be able to avoid a hospital stay and get to have Benton home for the holidays.  God is good.

Happy Birthday to our Terrific Two Year Old!

Family portrait with the birthday boy and his birthday sign!

Benton's second birthday was a time of joy and blessings for the Bertram family.  Both sides of the family had converged on DC to celebrate this special milestone for a very special little boy.  Having both sets of grandparents in town as well as close friends come together for Benton's birthday meant a lot to us.  We made cupcakes, opened presents and went for a phenomenal trip to the local park.  All in all the perfect day!

Benton's little sister makes her debut at the birthday party!

Singing Happy Birthday!

Birthday Family Portrait

Birthday boy with Auntie Breton and Mama

Opening presents :)

Papa helping Benton open his presents

This year, Benton actually tried the cupcake and the frosting which was a first!  Every day he is trying more and more tastes of food and stepping out of his comfort zone.  What a little rockstar.  We are so blessed that we were able to celebrate another wonderful birthday with this little miracle who is the light of our lives :)

Enjoying his cupcake!

Birthday Dinner / Early Thanksgiving with the Family

Pictures of our fun adventure at Lincoln Park over Benton's birthday weekend :)

Walking in the park with Tutu and Grandpappy

Playing in the leaves!

Beautiful moment with Grandpappy

Family moments at the park

Three generations

Giving Thanks on World Prematurity Day

Today is world prematurity day so I wanted to take a moment to reflect on life’s blessings.  This morning I re-read my blog post from last year and all I can say is “Wow”.  Wow - Benton has come so far to meet many of the milestones I yearned for last year.  Wow - Time truly does begin to heal all wounds, as my memories of the NICU have slowly begun to fade and today’s precious moments take their place.  Wow - Sometimes I can’t believe how truly blessed and lucky we are to have Benton in our lives today.

I write this post crying.  Crying because I am so utterly grateful to have my sweet, sweet boy in my life.  It has been over two years since Benton was born and looking at my son now you could almost forget his traumatic start to life.  Reading some of my previous posts put this in jarring perspective - God, we are so lucky to have him here today healthy and thriving.  Today, Benton is walking, he’s eating purees like a champ, he’s started to drink from a sippy cup, and he is fully oxygen free (even at night!!).  It’s incredible how much difference each year truly makes.  Compare this to many sleepless nights calling the NICU desperate for my son to be doing better than my last call; when doctors were telling us there was no hope for our son; and days upon days, weeks upon weeks, months upon months in the hospital.  God does provide miracles.  Benton is living proof.

Walking in the Park

So today, on World Prematurity Day, remember that miracles do happen.  That love and modern medicine combined can save babies born far too early.  I can’t thank Benton’s doctors, nurses, and respiratory therapists enough for everything they did for my son.  So today I give thanks.  Thanks big and small to everyone who has supported us these past two years.  Without your love and support we would not be where we are today.

Family Portrait

Benton is Walking!!!!!!!!

On October 5th, Benton defied all odds and took his first independent steps.  Since then he has been getting better and better - taking up to twenty steps at a time and walking all over the basement. 

Walking to Mama

Walking with Tutu and Abuelita

Seeing Benton take his first steps was magical and awe-inspiring.  Not only had the doctors told us Benton may never walk during his terrifying moments in the NICU, but seeing your son struggle to learn this skill makes you appreciate it so much more.  Benton's first steps at home and at therapy:

Benton has been crawling since January and while most kids crawl for approximately 3-4 months before walking, Benton crawled for 9 solid months.  While Benton had been cruising for ages, his balance was very tenuous and he needed orthotics so his ankles wouldn’t buckle when he stood.  But all of that work, all of the physical therapy and daily exercises, has been worth it - Benton is walking independently!!!!!!!!

Benton’s first steps brought many of us to tears, including his therapists, as this was a tremendous moment in his life.  Now Benton can go wherever he pleases and boy does he love the independence.  God is so good.  He has blessed our beautiful son with mobility and we are forever grateful. 

This blog post is dedicated to Benton’s new skill and we wanted to show off a bunch of photos and videos of him walking. 

This is the a video of Benton using his walker before he started walking independently.  This walker helped give Benton the confidence he needed to start walking all on his own :)

Happy Halloween!

Winnie the Pooh and the Gang!

This year Halloween was extra special.  Not only did we get to celebrate with a fun family costume, but my parents had flown in to celebrate Benton's birthday and were in town for a couple weeks.   For this year's family costume we picked a childhood classic - Winnie the Pooh, Tigger and Piglet. Benton loves Tigger especially the song "The Wonderful Thing about Tiggers."

Love our little Tigger

Prior to Halloween, we looked for a giant pumpkin to do a redux of Benton in a pumpkin, but had trouble locating one in the District.  Lucky for us we found one a couple of days before Halloween.  We were able to carve it and Benton had lots of fun playing with the pumpkin seeds as we carved the pumpkin.  Amazingly Benton was able to fit in the pumpkin and he seemed to like it even more than last year.

Pumpkin Bumbo 2.0

Picking out his own baby pumpkin and then first moments in his big-boy pumpkin

Fun in the Pumpkin!!!

On Halloween day, we all dressed up in our costumes and took pictures with Tutu and Grandpappy.  By the way our costumes were a huge hit and my costume was awesome since it was not only comfy cozy but it was great at covering my pregnancy bump.

Halloween Family Portrait

Looking at our little cutie

Tigger with Tutu and Grandpappy

That evening, we passed out candy to trick-or-treaters, carved pumpkins and took Benton out for his first time trick-or-treating at Auntie Lauren's house.  He loved walking around the neighborhood and picked out his first candy - a three musketeers.  Such a fun evening!

Three generations of men out trick-or-treating.

Carving Pumpkins with Grandpappy and Tutu

Our Lovely Pumpkins

Things are A-Changing...

Announcing we are expecting Baby #2!!!

After August's adventures it felt like summer break was over.  With September things really began to change in our household.  The first major change was that Joe's parents, who have helped to care for Benton for over a year, indicated that they would like to head back to Michigan sometime in the fall.  We had known this was coming so we had started to put out our feelers for nannies and looked into nurses.  Well as luck would have it, at the end of August we were contacted by Medicaid to say we were approved for in-home nursing for 40 hours a week.  This would allow us to work while also ensuring that Benton's medical needs were taken care of by a professional. 

Father and Son bonding

Once we were approved things moved very quickly.  Within two days the nursing agency was sending out nurses for interviews and we selected one by the end of the week.  This same nurse started the very next Monday and just like that we had in-home help.  After that whirlwind, Joe's parents decided that they would stay and ensure a smooth transition with the nurse and then head back to their home in Michigan.  So by mid-September my in-laws were gone.  Joe's parents had done so much for us over the last year and we couldn't have done this without their unwavering support and we are ever grateful for their loving sacrifice.

Once my in-laws were gone it was weird.  The house was so quiet without their hustle and bustle and it was definitely a wake up call to realize just how much they had helped around the house.  So many little things needed to get done and now it was all on us.  But at the same time it was absolutely wonderful to have our first moments as a family of three in what felt like ages.

Pictures as a family of 3!!!!

Family portrait after a bath

In addition, another big change is on the horizon for the Bertram family.  It's time to announce that we are pregnant and having a little girl in March.  The decision to have a baby after a micro-preemie is not one that you enter into lightly, but at the same time Benton is so amazing that we couldn't help but want to give him a sibling.  Luckily we were blessed to find out in late July that we were expecting and so far so good.  This time I have switched practices and will be seen exclusively at Georgetown Hospital which is where I ended up last time after Benton was to be born so early.  I have a great team of doctors and they are supporting me 100%.  This pregnancy I decided to have a preventative cerclage to help my short cervix as well as take the progesterone shots every week starting at 16 weeks.  So at the end of September I had my cerclage placed and while it definitely wasn't pleasant I felt it was necessary.  When my doctor performed the procedure he told me just how little cervix I truly have and how if I hadn't chosen to get the cerclage placed preventatively at 13 weeks I wouldn't have been able to do it later.  So thank goodness I made the right call.  After the cerclage I have been gradually placed on more restrictions.  No lifting Benton, no exercise, no traveling great distances from the hospital and modified activities (aka modified bedrest) so I am no longer working at the office but have the luxury of working from home.  While these restrictions are hard to take at times (all I want to do is pick up Benton and swing him around for a big hug) I am willing to do anything to keep this baby cooking longer than Benton and stay out of the NICU.  Now I just have to stay positive and pray for a healthy full term baby. 

Benton is so excited to be a Big Brother!!!!

Besides the big changes on the home front, September and October also had some crucial doctor's appointments.  This month we met with Benton's pulmonologist, cardiologist, occular plastic surgeon, GI Specialist audiologist, and new ENT.  Here is the lowdown on where Benton is medically:

• Pulmonology - Benton's lungs sound clear and we can attempt to wean him off the oxygen at night.  We can also wean him off the dieurtics and graduate to a big-boy nebulizer (which looked more like an inhaler).  By late September we weaned Benton off his oxygen at night, but when he got a cold in October he needed it again (luckily only at night).  So for now the oxygen requirement is touch and go but we are flirting with being completely oxygen free!!!!
• Cardiology - Benton's pulmonary hypertension is well controlled with his current medication and they are hoping to start weaning the medication once he is fully off the oxygen and diuertics.
• Occular plastic surgeon - Benton's dermoid tumor in his eyebrow is slowly growing and they want to remove it.  Just have to figure out when to schedule the surgery and if it can be coordinated with the ear tubes.
• Audiology - Benton still is showing hearing loss due to fluid pressure behind his eardrums.  Therefore we are being referred to ENT for possible ear tube surgery.
•  GI Specialist - In August Benton's weight had been stagnating since March with no improvement but no loss -- staying at about 23 pounds.  However, with the advent of Benton's new nurse Benton's weight skyrocketed to 27 lbs within 2 months.  Delphine, Benton's new nurse, is a rockstar at getting him to eat and has brought alot of positive changes to Benton's routine which has helped him burn off less calories thus allowing for him to finally gain weight.  Therefore, after Benton's October appointment we were allowed to wean Benton's tube feed by 1/3rd and start giving him breakfast!
• ENT - After two different ENTs have examined Benton it has been decided that Benton needs ear tubes to allow for the fluid in his ears to drain properly and increase his hearing.  The surgery is being scheduled in December.

Benton at the eye doctor.  Joe is not amused by the camera

With all these changes, we are just grateful that our family is thriving and moving forward each day at a time.  As we enter the cold and flu season we are praying for Benton to be able to stave off any colds and flus (especially the dreaded RSV) and not end up in the hospital like last Winter.  In addition, we are praying for our new little baby girl and pray that we are blessed with a full term healthy baby.  We would appreciate any prayers you send our way :)

After Officiating Auntie Breton & Uncle Chris' Wedding

Playing with pumpkins is fun!!!!

Learning to water the plants with Grandpappy

Watering is Benton's new favorite activity

Reading with Grandpappy