Second Appointment with Neurosurgeon

On Thursday, September 19th we met with Dr. Myseros and reviewed Bryce's scans.  Ray and I had viewed the CD at home and could very clearly see that the suture was closed.  So we knew we would be discussing surgery options and where to go from here.  We had several questions typed up for him and after he told us the basics of what his part of the surgery would entail we went through our list.

• The next step was to see Dr. Rogers, the plastic surgeon for a consultation (we made that appt for Oct 4)
• The optimal time for Bryce's surgery would be when he was 6-9months old (mid November-mid January)
• Bryce would have a surgery called a unilateral frontal orbital advancement
• Bryce has Coronal Synostosis
• Bryce's left coronal suture is closed
• Dr. Myseros's job was to cut into his skull and open up the suture enough so it wouldn't close too early again
• Dr. Myseros starts the operation.  His part should take a few hours and then Dr. Rogers finishes.  He said the operation should take about 5-6 hours total.
• Bryce will be cut, ear to ear, across the top of his head. Huge surgery, huge cut, very scary but I know he's going to be ok.
• His hair will only be shaved in the area where he makes his incision.
• All is well with his brain.  He will be adjusting his skull so his brain can continue to grow and his head shape will become normal over time.
• Recovery time in hospital is typically 3-5 days.  Once Bryce opens his eyes he can go home.
• He said he may or may not need a blood transfusion, just depends on how things go.  He said we would get more information about how to donate blood from Dr. Rogers at our next appointment.  
• Typically after surgery we will have a 2 week follow up, then a 6 week then go from there to see how often he will need to be seen.
• He said 10% of kids need another operation.
• Bryce shouldn't have any issues playing sports, getting hit in the head, etc. He should be fine just like any other kid.  He should have a normal life!  Phew!

Other questions we asked that Dr. Myseros said have to be answered by Dr. Rogers:

• Scarring - how long it will take to heal, scar to fade, size of the scar, etc
• Will Bryce need to see an eye doctor
• I asked if his nose will be touched or if adjusting his skull will make his nose straighten out

We also asked about the risks of his surgery which Dr. Myseros went over in detail with us.  He explained in depth his part of the surgery and how careful he is.  It's a little too intense and complicated to type about but I know Bryce is in great hands and will be ok.  I never thought I would be writing a blog about my son having to see a neurosurgeon or a plastic surgeon.  But I am so grateful that we live in an area that has the best doctors and care I could ask for.  That truly is a blessing and our experiences so far with everyone has been top notch.

By the end of our meeting his secretary had us scheduled to see Dr. Rogers, and again Dr. Myseros gave me a hug.  He said, "I'm glad I didn't make you cry this time, and don't worry Mom, he's going to be ok."

CT Scan at Children's

Friday, September 13th - CT scan

Bryce's scan couldn't have gone any better, what a relief!  Grandma came in to watch Kaylin (thank you Grandma!) and Ray and I headed to Children's hospital in Rockville, MD for his 11am appointment.  We left at 9:30am and got there pretty quickly by10:30.  We filled out some paperwork and they took us in right away.   I can't say nicer things about the people who work there.  Everyone was fantastic!

We went into the room, they dimmed the lights for us and I fed Bryce.  As planned, he fell asleep as I fed him, I swaddled him up and the nurses helped me put him in position for his scan.  Ray and I got to stay in the room throughout the scan.  The scan took only a few minutes.  He was perfect.  He remained sleeping and still the entire time, he didn't spit up and the scan was a success!  Deep breath, huge relief!  

When the scan was over the nurses checked with the neurosurgeon to make sure they were readable (which they were) then we headed to the waiting room to wait for the CD.  

The entire process from the time we got there until the time we left, probably took 45 minutes to an hour at most.  We would have had quite a different day if we had gone to Fairfax Hospital and Bryce had been sedated.  Again I couldn't be more thankful for Dr. Ku and her husband for reaching out to us and encouraging us to go to Children's Hospital.

The lines that you see are the open sutures in his head which allows his head to grow and take shape.  As you can see the suture on the right side is normal, but there is no suture on the left side.

4 month well check

September 10th - 4 month well check with Dr. Ku

Bryce weighed in at a whopping 16lbs 7oz.   I love having a chubby little guy and it cracks me up that he's the complete opposite of Kaylin when it comes to his size.  He is the happiest little boy and we are so lucky to have such a sweet little son.

We updated Dr. Ku on all Bryce's appointments and she reassured us that we were in great hands with Dr. Myseros and Dr. Rogers.  She told us that her husband is the head of radiology at Children's Hospital in DC and that he knows both surgeons very well.  She told us they're the best at what they do and that Bryce was in excellent hands.  I can't hear that enough!

I told her I had spoken to a nurse at Fairfax Hospital where Bryce was scheduled to have his CT scan.  The nurse explained to me that Bryce was going to have to be sedated for the CT scan and that since he had reflux he couldn't eat 8 hours prior to his scan.  Ray and I both weren't happy with having him have to go that long without eating and were very hesitant that he had to be sedated for the scan.  I explained to Dr. Ku as I did the nurse at Fairfax that if Bryce had a full belly he would fall asleep easily.  Also that he never spits up when he's sleeping.  He only spits up when he's upright and moving around.  Dr. Ku explained that if he did spit up while he was sedated he could get fluid in his lungs.  So we agreed we would listen to the nurse and her and not feed him.  Dr. Ku asked us why we weren't heading to Children's Hospital for the scan and I told her Dr. Myseros sent us to Fairfax probably just because it was closer and he deals with both hospitals.

The next morning my cell phone rang and it was Dr. Ku.  She told me she spoke to her husband about Bryce and that he said they could do the scan at Children's without sedation.  I was shocked to hear her voice on the other end of the phone but was overjoyed with her news!  No sedation, yes!  She asked me a bunch of questions about his scan that I didn't know the answers to and then said she would check on everything and call me back.  She called Myseros's office to get the script sent to Children's, and Fairfax Hospital then called me back.  I called Ray and we quickly made the decision to go to Children's.  Why sedate Bryce when we didn't have to?  It was an easy decision and I was so thankful she spoke to her husband.  I was on and off the phone with her all morning and could not be more grateful for her help.

Later in the day her husband, (the head of radiology at Children's) called me and gave me the name and number of who to call to schedule Bryce's scan.  He also gave me his cell phone number, and told me to call him anytime with questions or concerns.  WOW!  When I got off the phone with him I started to cry.  I couldn't believe he was now calling me, checking in to see how we were doing and going out of his way to do what was best for our son.  It was the best feeling to know that we had such fantastic doctors in our corner and looking out for our precious little boy.  Grateful to say the least and a day I will never forget.

This all happened on a Wednesday, we made an appointment for his scan on Friday at Children's in Rockville, MD.


                                                                           First day

And in other news...Kaylin started preschool this week!  She absolutely loves her teachers and is having the best time with all her new friends. Yay!

The First Appointment with the Neurosurgeon

On September 4th we had a consultation with Dr. Myseros and found out Bryce had craniosynostosis. I had not prepared myself for this appointment at all and thought we were going to rule out that there were any major issues with him.  Boy was I wrong.  I had convinced myself that Bryce needed a doc band and was going to be in his helmet for a while and all would be better with his head.  So the day of his appointment was pretty shocking and intense to say the least.

We got to Dr. Myseros's office and went right in to see him.  He picked up Bryce looked him over for less than 30 seconds and said "your son has craniosynostosis." He asked me what I saw when I looked at him.  I told him, the ridge on the left side of his head and his face looks a little flat, his forehead isn't straight and his nose is slightly crooked.  I told him that I was worried about his eyes, that one looked set back and one looked squished.  He agreed with all those things and also pointed out that Bryce's ears are misaligned.  He said everything I pointed out are classic signs of craniosynostosis and that Bryce also had positional plagiocephaly.

He explained to us that the suture in his skull had closed prematurely and that he would need surgery to correct it.

Holy s#!t, surgery.  I couldn't believe it.  I started to tear up and freak out.  A million questions and terrible thoughts were running through my head about what my poor little guy was going to have to endure.  Why is this happening?  How are they going to fix him?  Will my sweet little boy have a normal life after surgery?  As I was attempting to keep the tears from rolling down my face, (which I failed at miserably) Ray and Dr. Myseros kept talking.  I heard some details but missed a whole lot more which I later found out from Ray...

Dr. Myseros explained that Bryce's brain was growing fine but since the left suture was closed the right side of his skull was getting pushed out more than it should be.  Of course we asked what caused it to close, and the doctor said it was congenital.  In his words, the premature closure "would have occurred months before Bryce was born" and there was nothing we could have done to prevent it.  It wasn't because of the way I carried him or because of anything that happened during his delivery.  We asked what the risks were if he didn't have the surgery. Chronic headaches, cognitive and motor delays were things we were not going to allow Bryce to suffer with for the rest of his life.  Not to mention Bryce looking funny.

He told us if we decided to have the surgery it would be performed at Children's Hospital in DC since the plastic surgeon, Dr. Rogers,  he works along with only operates there.  He also said he didn't want to answer too many more of our questions because Bryce needed a CT scan so he could be sure, but then he followed up by saying, "I'm never wrong."  

At the end of the appointment Dr. Myseros shook Ray's hand and gave me a hug and told me Bryce was going to be okay.

Physical Therapy

We got back from NY on Sunday and started back at PT on Tuesday.  The first appointment (in July) with the Physical Therapist was great but also tough emotionally.  It was extremely hard to hear that Bryce needed therapy, that we needed to put him in all types of uncomfortable positions to make him stronger and stretch him out.  I had Mom guilt x 100 and it sucked.  I knew I didn't intentionally cause him any of his problems but I couldn't help but feel guilty that I could've done something better to relieve him from all this.  So when we were headed back to the therapist in August I was anxious and praying that we had done a good job while we were in NY.  The therapist told us he looked great. He was stronger, his neck wasn't as tight and he was progressing well.  He had more rotation and flexibility and was holding his head up a lot more than the month prior.  However his head shape still hadn't changed much even though we were keeping him off his back.  We talked more about the doc band and she referred us to Cranial Technologies in Annandale, VA for a consultation.  We called and got an appointment for two hours after his appointment with the neurosurgeon on September 4th.

Now that we've been going to therapy for over a month now, it's become part of our weekly routine and Bryce really enjoys it. Most importantly, our physical therapist couldn't be better!  She's great with Bryce and he absolutely loves her.  We joke now that she's Bryce's first crush.  He smiles at her, spits up all over her and laughs while she stretches him out and puts him through his strengthening exercises.  She is the BEST and I'm so grateful that we have her working with our son.

                                     Little Bryce 3.5 months old, happy as can be at therapy

Daddy and the physical therapist working with Bryce

Bryce's First Months

I'm writing this blog so we can update our family and friends on how Bryce is doing as he goes through this journey with craniosynostosis.  We've had so much going on lately that it's hard to find time to talk on the phone and update everyone.  So hopefully this blog will be a great way to keep everyone informed about all of his doctor appointments and answer some questions that people may have.  And who knows, maybe even Bryce will end up reading it one day.

Another reason for writing is so that other families going through something similar can hear our story and learn from our experience.  When we had our first appointment with the neurosurgeon I was in shock that Bryce had craniosynostosis and I was a complete basket case.  I cried a lot the first week after his appointment, and the only thing that helped me was reading other blogs about families who went through the same thing with their child.  Reading the blogs and seeing their pictures allowed me to get a grasp on what to expect through the entire process and I hope to do the same for other families going through this as well.

So here we go, from the beginning...

Bryce David Detwiler was born at Reston Hospital, VA on May 14, 2013.  He weighed 8lbs 1oz was 21.5" long and was full term with no complications at birth.  Other than the fact that he was HUGE compared to his older sister, Kaylin (who weighed 6lbs 1oz at birth) we had a precious healthy baby boy.  We were in love the minute we saw him.  He was cute as a button and is the PERFECT addition to our family.

Big sister Kaylin meets Bryce for the first time

Getting ready to leave the hospital

Bryce had quite the cone head when he was born but was still absolutely adorable.  The doctors and nurses reassured us it would go down within days and it did.  However we also noticed he had a ridge on the left side of his face/head and that did not go away.  His left eye looked larger than his right eye and he just kind of looked a little off.  We mentioned the ridge at his 2 week appointment and our pediatrician (we have several that we see in the group) said it was probably just from his delivery and he would even out soon.

              His right eye is usually squinty and his left eye looks wide open and set back a bit

Our next well check with another pediatrician was at 2 months.  On July 16th we saw Dr. Ku and she asked us if we had any concerns about Bryce.  We mentioned the ridge/flatness on the side of his head, his eyes looking funny, his nose appeared crooked, and that the back of his head was quite flat from sleeping on his back.  Our daughter had the same flat head when she was an infant so we weren't too worried about that but everything else really concerned us.  She examined him and referred us to Children's Therapy Center in Sterling and to see a Neurosurgeon, Dr. Myseros, in Fairfax.  Other than those issues he was perfectly healthy and doing great!  He weighed 12lbs 13oz and was happy as could be!  He was sleeping through the night (which was unheard of with our first) and just the sweetest little boy.

2 months old

We called the neurosurgeon and could not get an appointment until September.  He was in Greece, visiting family and was fully booked after returning from his trip because of the time off.  Thankfully we got in the next day for therapy.

July 17th - 1st appointment for Physical Therapy at Children's Therapy Center in Sterling, VA

After the physical therapist evaluated Bryce she told us he had right torticollis.  His right sternocleidmastoid (neck) muscle was tight causing his head to rotate to the left and tilt to the right.  She put him in a lot of different positions to stretch his tight neck and gave us exercises to do at home.  She also told us he had positional plagiocephaly.  We were to increase tummy time and keep him off his back as much as possible (but still allow him to sleep on his back).  We talked about his head shape and the possibility of him needing a doc band (helmet) as well.  I told her we were heading up to NY for a month to visit family and friends and asked if we should stay in VA so Bryce could continue to see her on a regular basis.  She reassured me that he would be fine with us doing the exercises up there and that she wanted to see how he looked in a month.  So the next day we left for NY.

We had the most wonderful time catching up with family and friends and everyone loved meeting Bryce.  Summer in LI is the BEST and I hope we continue to do it for years to come.  We nicknamed my Mom's house, Nanny's playhouse (think of PeeWee's playhouse from when we were kids).  She has tons of toys for the kids, lives on the beach and has the most beautiful property. Nothing beats waking up to the view of the bay day after day, watching Kaylin run around in the yard in her bathing suit with the neighbor's kids and going on adventures that our kids will never forget.  Oh and lets not forget my Mom!  Cooking the most amazing meals for us, helping out with the kids and being just the BEST Mom and Nanny in the world.  Spending time with my brother and his family, my Dad, my extended family and all my wonderful girlfriends is what makes my summer complete.  I miss them all year long and catching up with everyone day after day warms my heart.  However all good things must come to an end and on August 18th it was time to head back to VA.  I was more than ready to head home and see all our family and friends in VA, and of course sleep in my own bed.

                                             Nanny's Playhouse - North Fork, Long Island

                               

                       SUPER BABIES!  Bryce & Mila, my brother's sweet & super smiley little girl
                                             
In this picture you can really see the ridge on the side of his head/face and that his forehead is protruding on the one side.

My girlfriends & all our kids.  8 beautiful kids among the 6 of us.  

So grateful for all their love, support and amazing friendship for so many years.