The past 9 months

I've been terrible about updating this blog but am so happy to report Bryce has been doing great these past several months!  Following his surgery in December, Bryce was fitted for his STAR cranial remolding orthosis (helmet) and began wearing it on January 1st.   In February he had follow up appointments with his neurosurgeon, ophthalmologist, plastic surgeon, physical therapist, STAR cranial/helmet specialists, and the pediatrician. All of his visits went well--his neurological development was great, his eyes were in normal range, and his scar healed very nicely.  Dr. Rogers (plastic surgeon) was very pleased with how he looked (which is always good when a plastic surgeon likes his own work!) but did tell us Bryce would continue to change and look different in the months ahead.  We had appointments at Star Cranial every 3-4 weeks and those appointments were the furthest from home (Columbia, MD), took the longest (2-3 hours), and were hardest on Bryce. 

Around 9 months old (February) Bryce started crawling a lot, cruising a little bit, and getting busier as each day passed.  It was amazing to see how quickly he bounced back from surgery, and how happy he was through the whole thing!  He went to physical therapy only a few times in February and stopped going in March.  

The picture to the left was taken at his 9 month well check approximately 2 months after his surgery.  His scar was still red and would continue to look that way for a few more months.  However it was healing and looking better every day.  His hair also started growing a lot and before long was completely covering his scar. 

Head starts to look less swollen
10 months old (March)



Start to see bump on left side
11 months old (April)





May 2nd - last appt at Star Cranial - no more helmet!

May was a big month for Bryce! 

 He got his helmet off, first tooth, had a great check-up with Dr. Rogers, & celebrated his 1st birthday!  

Happy 1st Birthday Bryce!

Dr. Rogers told us the swelling would go down and his head shape would continue to change--and it did.  Once the swelling subsided we noticed a bump on the left (corrected) side of his head near his temple, which is a dissolvable plastic bracket Dr. Rogers put in his head to hold his forehead together.

Celebratory lunch after appointment with Dr. Rogers

May 16th was our last visit with Bryce's plastic surgeon, Dr. Rogers.  He was very happy with the way Bryce looked and told us that typically the bracket will dissolve and no longer be visible around December '14 -- maybe sooner.  He actually apologized and hated that it was so prominent, but of course we were just happy he  responded so well to the surgery and looks so great!  He told us we didn't have to come back for a year!  We were shocked and honestly I was a little hesitant at the 1-year statement.  We were seeing him every 6-10 weeks and the thought of not having to see him for so long was frightening to me.  Of course he reassured me that we can come in to see him at any time, but that Bryce looked great and he was more than happy with how well he was recovering.  We felt so lucky and proud of our little guy. Yay for Bryce!

On June 2nd we saw Bryce's new eye doctor, Dr. Bazemore, and she too said he was doing great.  Next appointment: 6-9 months!  Another huge sigh of relief!

On June 11th we saw his neurosurgeon, Dr. Myseros, and received pretty much the same report from him as well.  He asked us a bunch of questions about how Bryce was doing developmentally, he looked at Bryce's scar, forehead, measured his head circumference and told us to come back in 9 months.  If all goes well at that appointment we will only check in with him on a yearly basis.  

With all the appointments behind us it was time to celebrate and head to Long Island for the summer!  

Silly boy showing us his kissy face

Nearly impossible to get these two photographed together!
At the ocean, enjoying digging in the sand

End of June…in these two pictures you can really notice the bump on the side of his head

After catching up with all our family and friends in NY we were thrilled to announce Baby Detwiler #3!  Another little girl will be joining our family in mid-October! 

We got home from NY at the end of July and about a week later Bryce was walking.  He was taking steps, pushing toys, and cruising around for quite some time but I guess all he needed was to be home to really take off!

In September Bryce got his first haircut.  He went with Daddy to the barber shop and now he really looks like a big boy!  He's 16 months old, 9 months post-surgery, and this was the first time in a long time that we've seen his scar.  The hair will never grow on his scar but for months his hair was long enough that the scar was always covered up.  It's more noticeable on his right side than on the left for some reason.  He still looks handsome as ever and now so grown up and ready to be a big brother!  

And just like that no more bump on the left side :)

The bracket is no longer visible.  So much for having 

to wait until a year post-surgery! 

For families of a child with Cranio: I started this blog during a very difficult time in my life, and found comfort in reading what others had posted in various blogs online.  Starting this blog was not only therapeutic for me--it also allowed me to communicate updates to friends and family.  I hope that you find information and reassurance that others have gone through what you're going through, and that everything is going to be ok and your child too will heal!

PT & follow up appointments with surgeons

Bryce’s first day back at Physical Therapy was Tuesday, January 14^th, which was also his 8-month birthday!  He did great and his therapist was very happy with how he looked and how strong he is.  He still has a slight tilt but it’s only noticeable when he gets tired.  His flexibility continues to improve but he still doesn’t have as much mobility looking to his right as he does to his left.  Overall, he’s doing so well and we’re very pleased.  We are now on a bi-weekly schedule instead of weekly like in the past. 

Thursday we had his follow up appointment with Dr. Myseros.  The nurse asked us several questions about how he’s healing, how he’s adjusting to the helmet, and what type of things Bryce is doing.  She saw him clap his hands, smile, say “dada”, and blow bubbles with his lips.  She was very impressed with all his skills and of     course his charming smile!  She also measured his head, and no surprise here…HUGE!  Just like his sister and every other Detwiler.  He’s in the 96th percentile.  (Lots of brains, obviously.)  Dr. Myseros came in and made a few comments about how well and symmetrical Bryce looked.   With Bryce in my lap Dr. Myseros felt around his head and said, “He looks great.”  We continued to talk about Bryce’s head circumference and his jump from the 34^th percentile before surgery to the 96^th after he told us Bryce was on track, no motor or cognitive delays (thank goodness!), and that he would like to see us again in 6 months.  He will continue to see Bryce for several years to make sure his head is growing properly, that his suture doesn’t fuse prematurely (again), and that his neurological development is on track.

The next day we had another appointment with Dr. Rogers in Rockville.  He too was happy with how well Bryce was doing. At all of his appointments and PT we take his helmet off and same drill with Dr. Rogers.  We told him his scar concerned us a bit and he explained to us that it would be pink for some time and not to be alarmed.  We also asked if the helmet would make his scar worse and he said no.  We told him how the helmet was shifting and moving around when we laid him down and he wasn’t happy about that.  We talked about the fit of the helmet and whether or not it was safe to touch the left side of his forehead where everything has been reconstructed.  Dr. Rogers was pretty adamant that he didn’t want the helmet shifting and that it needed to be adjusted ASAP. He wanted the helmet to hold with slight pressure the right side of his forehead and hold less on the left (reconstructed) side.  He said we no longer had to worry about him sleeping on his stomach, face down and that Bryce was healed enough that the helmet pressure sleeping face down wouldn’t damage his perfectly reconstructed forehead.  Dr. Rogers said his face and eyes will continue to change over time and that his swelling is mostly gone.

Before we left Rockville we called Star Cranial in Columbia to see if we could be squeezed in and luckily, once again, they saw us.  We got there around 11 and were there until 1:30.  The appointments are SO long and this one was extra long because Bryce barely napped and we had Kaylin with us.  They put extra padding in the front of the helmet and it fits much better now.  It takes time and lots of patience but I think now that his forehead is more stable and Dr. Rogers gave the OK for the helmet to hold his forehead things will be a little smoother now…fingers crossed.   We go back on the 27^th for a follow up.   

 

Since Friday night Bryce is in the helmet for about 23 hours a day.  We give him a short break in the morning, sometimes one in the afternoon and take it off every evening for his bath.  Right before his last bottle we put it back on and he sleeps in it.  Surprisingly he’s been sleeping pretty well.  We have good nights and bad ones but overall he’s doing great! 

Last week was one appointment after another and now we get a week break! J  Each day gets easier and we’re already seeing an improvement in his head shape.   Again I never thought we would be where we are today with his recovery.  He’s healed beautifully and it’s such a blessing.  Yes, there are definitely challenges and some sleepless nights but overall he’s such a trooper and we couldn’t be more grateful.  We’re extremely lucky that he’s so tough and just the happiest little big boy! 

 Pics taken January10th, exactly one month since his surgery.  

Unbelievable how well he's healed!

Helmet

Bryce’s appointment at Star Cranial on December 31^st was pretty long – 3 hours to be exact.  Even though the helmet was made for him there were still many adjustments that needed to be made.   We would put it on him and then see how he would do for 20 minutes playing in it, then adjust it again (etc.).  They would check his skin and hair and see if the helmet was holding him in all the right places.  

The helmet doesn’t touch his forehead at all since his forehead has been reconstructed and there can’t be any direct pressure on it.  So instead the helmet is tighter around his cheeks and behind his ears.  There is space in the helmet in the back so his head can grow out and fill in that space. Ideally we want the back of his head to be more round/less flat.

Ray and I practiced taking it on and off and went over all the specifics about how to take care of the helmet, clean it with rubbing alcohol, etc.  Putting the helmet on him is still the worst part.  However, once it’s on him and we’re done adjusting it, he’s fine.  He plays all day in it and it doesn’t bother him.  When we lay him down to change his diaper or if he is on his belly he still gets cranky but I know that will get better with time.  He’s supposed to be in it 23 hours a day but that hasn’t happened yet either.  When we started the helmet they gave us a schedule for the first 5 days to work him up to 23 hours…

1^st day – 1 hour on, 1 hour off

2^nd day – 2 hours on, 1 hour off

3^rd day – 4 hours on, 1 hour off  - wear it to nap

4^th day 8 hours on, 1 hour off – wear it to nap and sleep

5^th day 23 hours on, 1 hour off – wear it to nap and sleep

The first few days were the hardest but after a couple days it became part of our routine.  In the beginning Bryce would get extremely sweaty so they suggested we have Bryce stay in a short sleeve onesie until his body temperature regulates.   He’s doing much better now, thank goodness! 

Bryce's surgery & pics 10 days after

Tuesday, December 10^th

The morning of Bryce’s surgery was pretty uneventful considering the snow we were expected to get.  We got to Children’s at 5:30am and missed the traffic and the snow by about 30 minutes (thank goodness).  We checked into the surgery center and got started pretty much right away with paperwork.  Bryce slept the entire car ride in and was a happy camper while we waited.  I was very nervous he would get cranky since I couldn’t feed him, but he did great.  He wasn’t allowed to have any formula past midnight and was only allowed breastmilk or water up to 3:30am.  So I woke him and fed him around 3:15am and was so happy that I did.  He started to get cranky right around 7:30 when he went in for surgery so the plan worked!  Around 6:45am a nurse came and got us from the waiting area.  She put him in a cute little gown and checked all his vital signs.  Of course he flirted with her the entire time!

A few minutes later Dr. Martin (anesthesiologist), Dr. Myseros (neurosurgeon), and Dr. Rogers (plastic surgeon) all came by and talked to us about his surgery.  Each Dr. had a team of other residents with them.  It was pretty intimidating to see 15 people circling around us, but at the same time comforting to know all these doctors were taking care of Bryce.  Emily (Ray’s cousin’s girlfriend – basically already family and a surgical resident at Children’s) was also with us and told us she would be observing Bryce’s surgery in the OR.  I can’t even put into words how comforting it was for us to know she would be in the OR with Bryce during the surgery.

Around 7:45 the nurses returned with a big warm blanket to get Bryce, and Ray and I gave our little guy a pep talk and snuck in some kisses.  It was an emotional time for us to let our little boy go, even though we knew it was for the best…  The nurses let us know it was going to take at least an hour to get all his IV’s and breathing tube in, and get him sleeping/knocked out comfortably.  Emily came out and updated us around 8:45 to let us know they were going to start his surgery soon, and that Dr. Myseros would update us when he was all done.   His part was the more dangerous aspect of the surgery, so we were anxiously awaiting our conversation with him. He came out to see us around 10:30, and in typical Dr. Myseros form got right to the point.  He told us how great Bryce was doing, that everything was going really well, and that he didn’t lose too much blood.  Dr. Rogers was still working on him and would be out to talk to us in a few more hours.  Ray and I were SO relieved – that was the best news I had ever heard.  Our little guy got through the toughest part, Dr. Myseros took wonderful care of him and his suture was now open to allow his brain to grow and his head to take normal shape.  Huge relief. 

Ray and I needed to get out of the waiting area and take a walk, so we went to the car to get the present from Kristin and Nanette (Ray's cousin and Aunt).  The BEST gift in the entire world I might add! The book was full of cards and notes from our family and friends (near and far).  Tons of funny stories, notes full of encouragement, and pictures that made us laugh until we cried.   It was the greatest break from reality.  Ray and I laughed so hard and are still just so touched that this was done for us and for Bryce.  We truly are so loved and super blessed to have such wonderful family and friends.  

Around 1:30pm Dr. Rogers came out to the waiting room and told us how well Bryce was doing.  He went over again how he performed the surgery, how Bryce now has plastic plates holding sections of his forehead together (that will dissolve over time), and also talked about his stitches (approximately 200).We asked him if Bryce lost any more blood and he told us he didn't -- in fact they only used half a unit of our blood for him.Truly amazing, and such a relief.  So blessed to have two of the most amazing surgeons work on our son.

Dr. Rogers said it would take some time to get Bryce up to the ICU so we grabbed a quick lunch then were on our way.  I was a nervous wreck about what he was going to look like.  I had seen pictures of babies right after surgery and even though I felt prepared you’re really never prepared to see your little baby in that state.  To my surprise he looked pretty good and thankfully his head was completely wrapped up so I couldn’t see the drain that was in his head.   He seemed to have IV’s coming out of every limb and had monitors attached all over his little body.  He was pretty out of it for some time too but overall he looked great.  He slept a lot and was being closely monitored by the PICU nurses who were in and out of his room constantly.

The first 24 hours after recovery were pretty rough.  Even though Bryce was pretty sedated and drugged up we did have times where he was crying and totally uncomfortable.  His cry sounded terrible, his throat was so scratchy and hoarse from being intubated.  It’s a sound I never want to hear again.  He was trying to roll on his side at times and we could just tell he was so uncomfortable with everything that was attached to him.  The nurses were great but there were moments when we had to make sure he was getting his oxycodone and morphine on time.   We didn’t want him to feel any pain if at all possible so staying on top of his pain meds was top priority for us. 

Only one person was allowed to sleep next to him at night so Ray and I took turns sleeping in the “family room” down the hall, which was basically a room with reclining chairs and some random people.  Around 10pm Bryce opened his eyes and could see me, and started swinging his arms around.  I gave him his Sophie the Giraffe and he got so excited!  He was laughing and throwing the giraffe around and playing with it.  I was so touched by his happy little moment.  It was like he was back to himself for those 5 minutes – and it was then that I knew he was going to be OK. I cried, tears of pure joy that he was happy and playing.

The night was a blur though… Nurses were in and out, Ray and I slept just a little bit, and by Wednesday morning we were ready to get out of the ICU. Around 6am Dr. Myseros came by, then around 7am Dr. Rogers popped his head in to check on Bryce. Both were happy with how our little guy was doing.  By mid morning his catheter and one of his IV’s were taken out as well.  At that point they told us he would probably be out of the ICU by mid afternoon.  Hooray, not even a full 24 hours in the ICU! Bryce is such a champ.

Mid morning Bryce was sleeping and our nurse stayed with him so Ray and I could get breakfast and meet Lance and Claire (Ray’s cousins).  It was so nice to see their smiling faces and get great big hugs from them.  Again, I cried. Typical.  I think they were our lucky charms too.  They came back to the ICU to see Bryce and within minutes our nurse told us they were ready to move Bryce upstairs to the neuro recovery wing.  So off our visitors went and we went upstairs with Bryce to a much bigger and more comfortable room.   He was put in a crib instead of a huge bed, and slowly but surely was able to get rid of his IV’s and monitors.  Although the swelling in his face/eyes got worse we could tell his spirits were lifting.

   Wednesday evening, peak swelling

Wednesday evening was tough.  Ray left around 8:30 to head back to the house to get some sleep and get Kaylin to school in the morning.  The nurses tried to wean Bryce off of the pain meds (which totally makes sense) but he was pretty miserable at times.  Their rule was basically that if we couldn’t console him and calm him down then they would allow more pain meds.  There were times we could console him and times we couldn’t and had to ask that they give him something.  Also holding him was very difficult since he still had the drain attached to his head and was still hooked up to the machines.  Wednesday was also the peak of Bryce’s swelling.  He could barely see out of his eyes but could still open them; they never swelled shut like we expected.

 

Thursday was much better.   Dr. Myseros came by bright and early and told me Bryce could go home later that afternoon! His eyes were open and he looked great but I wasn’t so sure, and was super nervous that he might need heavier pain meds which we couldn’t get for him if we were at home.  About an hour later a resident that worked with Dr. Rogers came by and took out Bryce’s drain and unwrapped his head dressing.  It was the first time I saw his scar and it was pretty intense, but not as bad as I had imagined.  I really think seeing pictures of other babies that went through this surgery helped prepare me immensely. It was so much easier to hold Bryce and cuddle with him without having to stand next to the bed holding the drain. 

The BEST daddy & husband in the world!  Took such great care of all of us, all week long.  

He's my rock, and I'm so lucky to have him.

Ray and my Mom got to the hospital around noon and Ray’s Mom came to our house to watch Kaylin for the day.  Thank you Grandma!  Bryce had a good day.  Dr. Myseros came by again in the afternoon and reassured us it was safe to go home and all Bryce needed for pain was Tylenol and Ibuprofen.  An hour later Dr. Rogers came in and recommended we stay one more day – and Ray and I agreed that we felt more comfortable making sure Bryce had another day under the care of doctors and nurses before heading home.  Probably our biggest concern was that we wanted to make sure Bryce didn’t need heavier pain meds and could go a day without them.  He did great Thursday night – no morphine or oxycodone needed. Mom and I left around 6:30 and Ray held Bryce most of the night to comfort him, but we were relieved he did well without the meds.  
                                              

My amazing Mom who took care of Kaylin all week, then came to hospital to see Bryce and give Ray and I a break.  I don't know where she gets her energy from.  But I hope I'm as great of a Mom as she is one day.  Love you Mom!

I was happy to get some sleep in my own bed Thursday night, and went to Kaylin’s Preschool Christmas Show Friday morning.  After a long scary week with Bryce it was the greatest gift to be able to see Kaylin sing Christmas songs and watch so many adorable and excited little kids.  It was truly heartwarming and just what I needed.  

I rushed back to the hospital Friday afternoon and found Ray and Bryce watching Top Gun on the laptop!  They were both so happy and I was so relieved.  We were really ready to leave and Bryce was looking and feeling great.  We checked out of the hospital just a few hours later, around 2pm and felt grateful to be heading home with our little boy – a great weight lifted off our shoulders.  

Took these pictures after his bath.  Friday, December 13th.  Ready to leave the hospital.  

Saturday, December 14th - Bryce is 7th months old today!  We got lots of smiles out of him.  First full day at home, he did great and loves watching Kaylin all day long. Kept him on tylenol every 4-6 hours for pain, and sometimes gave him ibuprofen too.  Plastic surgeon wants him sleeping upright  so his head doesn't swell on the side he's sleeping and also to keep him off where his plates are.  He's sleeping in his swing or on Ray at night.

Wednesday, December 18th - one week (and a day) after his surgery

Amazing how quickly he's healed!  Never thought he would look this good one week after surgery.  He's still sleeping in his swing, some nights better than others.  His swelling has gone way down.  Yesterday we took him to the pediatrician because we were worried about his breathing and he still had a bad cough.  He has a lung infection...basically a walking pneumonia.  Probably due to being intubated during surgery.  He got amoxicillin which gave him terrible diarrhea and diaper rash, so Thursday the doctor switched him to zithromax.  He's doing much better now, thank goodness!

Thursday, December 19 - I'm posting this pic because his forehead and eyebrows look so incredibly straight to me. I also notice that his chin and nose are a little crooked (and always will be) but he looks so much better and symmetrical.  He's obviously still swollen, but no more ridge on the side of his face and his eye isn't bulging.   Our plastic surgeon is THE BEST!

Friday, December 20th - 10 days after surgery - post op appointment with plastic surgeon, Dr. Rogers in Rockville, MD.  Dr. Rogers was very happy with how he looked today.  

He encouraged us to clean his scar with some peroxide and scrub his dressing a bit more thoroughly. 

He still wants us to keep him from sleeping on his face/belly.  About a month before Bryce's surgery we couldn't keep him off his belly at night.  We would put him to bed on his back and he would roll over onto his belly to sleep.  We told Dr. Rogers we were concerned that he hasn't been rolling over and he said that's normal and it will come back as he heals.  Before surgery he was rolling all over the place, totally across the room at times.  

We talked about getting Bryce in a helmet since the back of his head is still pretty flat (he has brachiocephaly).  Dr. Rogers recommended we go to Star Cranial Center in Columbia, Maryland and go as soon as we can since the older he gets the harder it is to mold his head.  He said we would get a helmet that would only put pressure on the sides of his head, not his forehead and leave space in the back of the helmet for his head to expand and round out.  Hopefully he'll be in the helmet for only a few months and he'll have a perfectly shaped dome just in time for summer!  We called Star Cranial as we were leaving Dr. Rogers' office and actually got an appointment for noon today so we drove straight there since we were only 30 minutes away.   It couldn't have worked out better.  

Happily playing and waiting for Dr. Rogers

Paper is so much fun!

                                              

We arrived at Star Cranial around noon.  They asked us a bunch of questions about Bryce's medical history, his surgery, scanned Bryce's head, talked to us about the type of helmet that would be best for Bryce.  We picked a black helmet so Ray can decorate it with Steelers stickers and we go back to pick it up December 31st.   Happy New Year to Bryce! He'll be in the helmet 23 hours a day starting the 31st.

Lastly but most certainly not least I have to thank all the wonderful people who have helped us get through the past few weeks.  All the amazing girls from DCC, I can't thank you enough!  Amy, Danielle, Jen, Jillian, Lynette, Cathie & Wendy.  These wonderful women have been dropping off dinner for over a week now and it's the greatest treat.  It's such a huge help and so nice to have delicious home cooked meals.  Thank you!  

My Mom has been here and has been taking care of all of us, especially Kaylin when we are busy with Bryce.  Ray's Mom has helped us out too and we couldn't be more grateful.  My brother and Annette for making me laugh so hard it hurt, and for being here for me throughout this entire thing, thank you for listening, I love you.  Emily, Lance, Claire, Lucas and Kim, thanks for coming to see us, checking in on how Bryce was doing and giving us much needed breaks from our day.  Again all our family and friends for the beautiful book Nanette and Kristin put together.  We love you guys.  My NY girlfriends and cousins for showering us with gifts.  Our Locklear neighbors and our new Deerhurst neighbors, thank you for helping out my Mom, checking in on her and Kaylin and being here for us if we needed anything.  And everyone for all the calls, texts, emails, prayers and well wishes.  Thank you, thank you, thank you!  We are so blessed and thankful for all your love and support!

“Keep your face to the sunshine and you cannot see the shadows.” ― Helen Keller