Helmet Therapy and Beyond

Months have passed and honestly, things are going so great with the Little King.  I apologize for neglecting to share our helmet journey, but I will share a few pictures with captions from the past 8 months. It's been a whirlwind of emotions (from Archer, Mama and Dada....)  So, so many emotions.  Sweet Archer remained a demanding and high needs infant, but has really blossomed into such a fun and active little toddler.  He is a great communicator and always lets us know how he is feeling and when he wants his desires met.  As we move into true toddlerdom, this is somewhat expected, and I tend to often think, "Wow.  He's basically just like every other kid his age now." HAHA, until we get together with a group of kids his own age.  Archer is definitely paving his own path, and the Lord is really helping me learn to love it.  Everyone enjoys watching their child grow, and I am no exception.  I take photos and videos of him all day, as we play together.  Then, after he's asleep, I review the day's footage.  If I wasn't his mother, I'd be a total creeper.  I just love him so much!  Nothing compares to being a mom!  It's beyond edifying and challenging to my heart and mind, but it's absolutely perfect.  You know how marriage really brings out the selfish nature of our hearts? Yea...have a baby.  Hehe!  Then you'll really understand how self seeking you really are.  

I digress.  A few quick updates from the past few months!

We saw the orthotist every two weeks to a month for helmet fittings.  Archer really rocked them after those first few visits.  By the time we completed the helmet therapy, the orthotist didn't even remember his outrageous wailing.  She always would say "He's just such a good baby!" "What a little rock star." etc. and so on.  Seriously incredible how he would do at these visits.  I don't think we ever had to take more than 1 comparison scan, except maybe once after he was just distracted.  Praise God for that! 

By the end of January, we had battled through heat rash, raw skin from rubbing, and discovered the beauty of moleskin.  Archer adapted easily and quickly to the helmet.  Sleep was touch and go at the beginning, since he would turn his head side to side as a method of self soothing.  That became a bit more challenging with the helmet strap across the back, but he quickly adjusted.

Mid February (7 months old, 3 months post op, 2 months in helmet) As you can see, his head shape is changing a lot.  I'll add some before pictures at the bottom of the post. Also, I miss our little fat fat :( He's so lean now.

Mid February (7 months old) Starting to grow out of his post of helmet.  The first one was clear so we could see the incisions and insure they were healing properly.

A few days after the above pictures were taken, we received Archer's second helmet.  This big golf ball!  He transitioned effortlessly to this one, despite it being much bulkier.  Not long after, we moved him to his crib at night from cosleeping.  We had to install bumpers, because he would flail around and bonk his helmet into the rails every half hour.  Guess it was a good thing he had that additional protection, or he might have never slept! 

I put my art training to good use, and painted the golf ball helmet like an aviator.  There were a lot of adorable designs and ideas via google, but this one was just so dang cute.  You will notice a little star wars tribute in a later photograph.  Chance wanted him to have a rebel helmet, but since I was the one looking at it every day, I got to choose.  I decided to compromise a smidge.  We still have Archer's helmets, and one day his stuffed animals will wear them.  I know he'll love to hear about his journey as a cranio warrior when he gets older.  Not many kids can say they've overcome brain surgery before 6 months old!

Mid March (8 months old): His head looked so good! perfect little round thing. 

Late June (11 months old): Still sporting the aviator helmet during our visit home to Texas.  

The week we found out we were DONE with the helmet!  Bring on the summer heat!

Archer on his first birthday! 8 months post op! You would never know he ever had a surgery or any issue with his head at all.  The endoscopic surgery and helmet therapy worked wonders for his shape.

Our last appointment with the plastic surgeon (for this year anyway).  The scars are so hidden that Dr. Marcus had trouble finding them!  We will still visit the plastic surgeon once a year until Archer is age 6 and everything has closed up nicely.  

So, that is the helmet journey in a nutshell.  A nutshell disguised as just a bunch of photos of my baby!  What can I say, he's too cute to not share with the world.  He is such a blessing to our lives, and we thank God every day for His hand over Archer's first very rough year.  We know it will only go up from here.  

:: Just a couple of before photos of Archer's fused suture. You can see the dip in the top of his skull, where the suture was restricting the brain from growing in width.  This caused the head to look slightly pointed from the front view.::

Home

When I wrote down the events of Archer's story, I had included the following.  

We are closing in on 2 weeks post op and his incision wounds seem to be better after every single nap.  We are able to scrub them clean and put polysporin on them, without any fight from Archer. In fact, he is totally unphased, as if we are not touching him at all. He used to hate his head being touched and would refuse to wear hats.  I’m not saying it’s because of the surgery that he maybe feels less sensitivity there, but it is uncanny timing for him to suddenly become less bothered.   Our next step in this journey is his helmet fitting and transitioning into wearing that for 23 hours a day. 

We were discharged on a Thursday, allowed swelling to disappear over the weekend, and went for his post op helmet scan on Tuesday.   His pre-op scan was somewhat of a disaster that resulted in owl like screeches, overwhelmed shakey hands and arms, and a bright red face that remained red for an hour afterwards.  Did I mention the scan required him to lay on a piece of glass (like a copying machine) still for all of….2.5 seconds.  He couldn’t do it!  I was super worried we were going to have trouble with the post op scan, but after hours and hours of prayer, we were able to get the scan in the first attempt!   We had brought all the toys we own, along with my mom and cousin for added support.   So thankful we didn’t need them. 

Next Monday, we have a post op appointment and then the helmet fitting.   We were warned they can be a bit rough on the baby, because they’ll be taking the helmet off and on to make sure it’s fitted correctly.  It can be annoying, but won’t be painful at all.  I anticipate lots of crying and cranky behavior as we begin walking down the helmet path.   We’ve made it this far!  We’ll make it a few month in a helmet.

Update:  His helmet fitting was pretty rough.  The orthotist didn't lie about that.  Mainly, Archer did not like having it on and off, as well as all the pulling to make sure it was on correctly and fit snug.  As usual, he was pushing his awake time, getting very cranky, and super easily irritated, resulting in escalated crying.  He even ended up falling asleep in my moms arms, while we were scheduling our future appointments.  This may seem like normal infant behavior, but it was not with our child.  It still isn't at 5.5 months. He doesn't sleep just anywhere. I will write a separate post on his helmet journey, but wanted to update on that fitting.  The ones since have not been thrilling, but they are just something we have to deal with in order to move on to the next phase, which is to be helmet free!

Post Op: Day 1

I had slipped out to check on Chance and grab some food from Starbucks at around 5 that morning.   Just in time to miss the doctor’s rounds, of course.   My mom relayed the message that they were expecting him to go home later that day.  What?!  The surgeons had said they thought he would only stay a couple of days, but we didn’t expect to only spend one night there.  How on earth can an infant have a piece of his skull taken out and then be sent home the following day?   Babies have the most incredible fight, will to live, and miraculous healing capabilities.   We think they’re so fragile, but they handle and recover from things a million times better than adults! It’s amazing!  

So, at around 8 a.m., Archer was able to be freed from a lot of his tubes.    He was smiling and kicking around. Back to his old tricks!  He had only almost smiled one other time, during an early morning diaper change by my mom and myself.  As usual, his awake time was approaching the one hour mark, and he began to get fussy.  Another patient had been admitted into the room again that morning, so I was trying my best to keep him from crying much.  I was able to rock him back to sleep for about 45 minutes, before the order was finally submitted for us to move to the regular recovery room.  During that time, Dr. Fuchs visited us again and mentioned going home that afternoon after they monitored him a bit more.  The morning nurses helped us get archer into the “crib” bed to wheel him down to the recovery room.  Luckily, he had had just enough sleep to not be a total fuss, and was alert and smiling.  One of the nurses even asked me, “Is he normally just a really happy baby?” To which Chance and I looked at one another, laughed, and said, “No, he’s usually pretty cranky.”  

We were unable to take the rocking chair with us to our new room, so my mother in law had gone and gotten us a camping chair that rocked!   God send!! So grateful that she thought of that, because it allowed us to get another couple of power naps for Tater.  At around 4 pm, we got a visit from one of the doctors on Dr. Marcus’ team, saying that he was putting in the paperwork for us to go home!   Less than 36 hours later, we were going to be back at our house. It seemed like days being in the PICU with a child in pain, but what an amazing turn around!  When we were taken to the recovery room, we were told that pain meds would be administered as needed.  We were to let the nurses know if Archer seemed fussy. He never did.  He went from morphine all night to nothing. NOTHING! We gave him a small dose of Tylenol when we were home, the following day, but he never used his prescription for oxycodone.  The doctor discharging us kinda gave a surprised face, and said he was impressed that archer was not on anything, but that it was great news.   We packed up and headed into rush hour traffic to make our way home and put our tater baby to bed.  My amazing mother in law made us dinner, and I even had a moment to sit with my sweet cousin who came into town that day.