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

Pre-op appointment

Thursday, December 5th was Bryce's pre-op appointment at Children's in DC.   Ray and I both gave blood first and then had his pre-op appointment with the neurosurgeon at 1:30.  Bryce was his happy little self in the blood bank, smiling and playing and just being cute as can be.  For some reason our paperwork wasn't complete to give our blood to Bryce so it took forever to get started.  But once everything was signed we were good to go.  While we were waiting we met a really nice couple who were giving blood for their daughter who is having open heart surgery on Tuesday.  She's only 9 weeks old. So heartbreaking to see what other people are going through.  I'm sure we will bump into them next week while both our kids are in surgery.

After donating we went upstairs to meet with Dr. Myseros.  He went over the procedure again, his part mostly, then mentioned Dr. Roger's part and we asked him a few questions.  We had to sign a very scary paper/waiver stating we understand all the risks in having the surgery etc.  That wasn't so fun.  The appointment was very quick.  He said a nurse would call us Friday, which they did with instructions for Tuesday's surgery.  

Afterwards we headed back downstairs for Bryce's blood to be taken.  Ray held him while the nurse drew his blood for what seemed like 10 straight minutes.  He was so strong though and stopped crying once I picked him up.  He's one tough cookie.  But I absolutely hate seeing our little guy in pain.  It was a long day but it also feels good to have it behind us and be one step closer to surgery day and getting Bryce taken care of.

So thankful for our family insider/surgical resident at Children's Hospital, Emily Koeck, for donating blood for Bryce on Friday this week as well.  

This past week has been very hard.  Harder than I could've ever imagined.  I've been extremely anxious about his surgery, nervous about Bryce getting sick before his surgery, and worried about all of the things I can't control.  Ray has been my rock and has helped me keep it together and stay positive.  I don't know how he does it but without him I wouldn't even be able to function.  He does so much and always knows what to say.  We are doing what is best for our son.  I keep saying it over and over in my head.  My Mom also arrived this week and has kept Kaylin entertained while we were at the hospital with Bryce.  She has fed us, kept me calm, let me cry, allowed me to sleep off my migraine, and most importantly just been here.

I also reached out to another cranio mom whose blog I read when I first found out about Bryce.  Her daughter had the same coronal craniosynostosis that Bryce has and her daughter had surgery this past May.  It was so great to talk with her and see pictures of her daughter right after surgery and now and also get advice from her since she's been there.  She has helped me more than she will ever know and I will be forever grateful for her willingness to share her story with me.  Her daughter is doing so great, and I know that will be Bryce too when he is all healed.  

She also encouraged me to get a care package from Cranio Care Bears, http://craniocarebears.org which I had just done a week prior.  The package came yesterday and is filled with absolute love.  Everything from things we need to keep us entertained in the hospital, to toiletries, to a hat and pj's for Bryce.  Such a wonderful gift.  That same day we also received a beautiful snuggly Vermont Teddy Bear and matching outfit from my wonderful girlfriends.  Can't talk much about them or I will start to cry, but they know how much I love and appreciate them for all their support through the past months.  So needless to say we are most definitely feeling the love.  We have received emails, texts, phone calls and so many well wishes.  It's so nice to know so many people are thinking about us and praying for our little Brycie.  We feel so blessed and I thank every single one of you.

So Tuesday is the day. We will be at the hospital at 5:30am, his surgery is at 7:30am and it should take around 6 hours.  I will update the blog as soon as I can.  Thanks for all your thoughts and prayers xo

Appointment with Ophthalmologist

On Tuesday, November 5th we met with Dr. Hutcheson to see how Bryce's vision was measuring and to get an idea of where he was before his surgery.  She dilated his eyes and put him through a bunch of tests, and so far so good!  Huge relief!

However she did say that about 50% of the children that have coronal craniosynostosis need eye surgery, so she wants to monitor him closely.  He will probably need to see her for the next 3-5 years depending on how he's doing.  So Bryce will go back to see her in February once he's all healed from his surgery.

Also if he does need eye surgery she said the procedure is pretty quick and he would be out of the hospital the same day.  Nothing compared to his cranio surgery.

On our way out of the hospital we happened to walk by the family services department.  We decided to walk in and see what it was all about and were so happy we did.  We learned they have something at Children's called Child Life Services.  We met the manager of the Child Life department and the manager of the social work department.  Both women were extremely helpful and encouraging, and the Child Life Specialist walked us around the PICU (pediatric intensive care unit) and explained to us that Bryce will probably be there for at least one night and then will be moved to the neuro wing.  We talked to her about Bryce's surgery, visiting hours, the type of room we will be in and so forth.  She encouraged us to rotate sleeping at the hospital and to have a plan for visitors, sleeping at home, friends bringing us food, etc.  She also talked to us about Kaylin, if we should bring her to the hospital, how and when to explain Bryce's surgery to her, etc.

In the meantime:

We had a wonderful Halloween!  Cinderella and her little cute mouse were so adorable and had a blast trick or treating.

Bryce is so strong and is sitting up so well now!  He loves playing with all his toys and grabbing everything in sight.  He's rolling over a ton and also enjoys being on his tummy a lot more now than he used to.  He's getting so big!

We have a plan

Bryce's surgery will be on December 10th at 7:30 in the morning.  We will have a pre op appointment with Dr. Myseros (Neurosurgeon) on December 5th.  We will also donate blood on the 5th at Children's in DC.  We are all O+ so hopefully nothing will be wrong with our blood and he can have ours.  We are only allowed to give 1 unit each, and Bryce only needs 2 units for his surgery so we should be all set.

I thought I would feel a great sense of relief now that the surgery was scheduled....

I am happy we have a plan and can schedule things but also feel nervous/anxious/sad because now that there is a date, it feels very real.  Most days I'm fine and am very positive about the whole thing.  Then I have days like today....I'm sad and nervous and angry that he has to go through this.

So since I have nothing positive to say I'm going to stop writing.  Anyone ever seen Debbie Downer on  SNL?  I feel a little bit like her today.  But I can't help but crack a smile at this skit.  Everyone is totally cracking up.  And who knew Debbie herself had a 2 year stint at Children's?!

http://www.nbc.com/saturday-night-live/video/debbie-downer/n11825/

Grateful

It was weeks ago that I sent the link out to family and friends about this blog and the response we got was SO amazing.  We are extremely lucky to have such wonderful people in our lives and couldn't be more thankful!  We've received visits, calls, emails, texts and so much love and support.  We truly are blessed to have so many people thinking and praying for Bryce.  Thank YOU!  We love all of you!

Bryce turned 5 months old on the 14th and is rolling over a ton,  loving tummy time and trying to sit up by himself.  He also loves to jump up and down either on our lap or in his exersaucer.  He likes to pull my hair (and Kaylin's!) and is still spitting up like a champ.  He's very into grabbing our faces as well.  Nothing makes him happier than a nice slobber on Ray's face.  It's so cute how much he loves his Daddy.  He probably looks at Ray and thinks, "Man, my Daddy looks just like me!"

We are still waiting to hear when Bryce's surgery will be scheduled.  I called earlier this week and talked to both surgeons' schedulers.   Hopefully we will have a date by the end of next week.   The plan is still to have surgery in about a month when Bryce is 6 months old.  It's less than a month away and the anticipation is not fun.

In the meantime we scheduled an appointment with the ophthalmologist.  We go to DC Childen's hospital on November 5th to meet with Dr. Hutcheson, and will (hopefully) come away with a baseline on Bryce's vision.

I was finally able to get some pictures of what Bryce's head looks like. When you look at him straight on it's sometimes hard to notice but looking at him from above you can definitely see how uneven his forehead is. His surgery will adjust the left side to be even with the right.

Plastic Surgeon Visit

I keep thinking these appointments are going to get easier but they don't.  Now that I know more, I'm more upset that we didn't insist on getting Bryce help sooner.  I keep going back to Bryce's 2 week appointment and wishing I would have done things differently.  I wish I would've insisted that they refer us to someone instead of just listening to the pediatrician and waiting to see what he looked like at 2 months.  I know I'm torturing myself but I can't help but wonder what Bryce's suture would've looked like so young.  We learned yesterday how great the endoscopic surgery is -- or could have been.  30-minute surgery, small incision, helmet afterwards -  and that surgery has better results in fixing all his facial abnormalities (his nose is crooked, ears are misaligned, chin is crooked) and is obviously less invasive.

The surgery is usually only performed on babies up to 5 months of age but it all depends on what the suture looks like.  Unfortunately for us, Bryce's suture is completely closed from the top of his head all the way down to his eye.  So the endoscopic surgery is definitely not an option.  In hindsight I kind of wish now that I didn't know all the wonderful parts of that surgery. We had a shred of hope that the endoscopic procedure might still be an option, but now know we're planning for an open surgery.  No matter how much we learn about it, it doesn't get any less scary.

Dr. Rogers asked us if we wanted to know all the details and we said we did, so I guess we had it coming.  It's just hard to hear that he could have had an easier surgery.  But then again, maybe not.  Ray keeps reminding me that his suture could've been completely closed when he was born.  We have no way of knowing, so I guess I should stop torturing myself.  Mom guilt sucks.

Things we learned from this appointment:

• Dr. Rogers agrees with Dr. Myseros and wants to do a unilateral frontal orbital advancement to open up the coronal suture that is closed.
• He would like the surgery to be closer to 6 months of age, so around mid November
• Bryce needs to see an eye doctor to check his vision
• He tilts his head slightly, which we thought was due to the torticollis but it's more likely because his eyes are offset (ocular tilt) and that's the best way he can see :(  Problems with vision are likely as Bryce gets older.
• After surgery and Bryce's forehead is straighter/more even we will probably notice his facial abnormalities more.  Fabulous.  
• Dr. Rogers said there is no way of correcting it because his entire face is shifted.  It probably won't be severe enough to try to correct down the road.
• We could still put Bryce in a helmet after surgery to help with the flatness on the back of his head if we want.
• His scar will heal very quickly and should be very thin. His hair will not grow on the scar but if his hair is long enough it will cover it up.  Dr. Rogers said if his hair is a short as Ray's we'll be able to see the scar. (Ray says chicks dig scars)
• The eye doctor he wants us to see is booked until December, but Rogers is going to get Bryce in.  Good to know people I guess :)  Dr. Rogers wants us to have a baseline prior to surgery.
• Next steps are to see the eye doctor, schedule the surgery date, and find out when we can donate blood.  He said blood donation is 2 weeks prior to his surgery date.  Very soon.
• Dr. Myseros and Dr. Rogers will follow up, discuss their opinions on how to approach Bryce's surgery, and get back to us on when/how to proceed. 
• On a lighter note, Dr. Rogers is quite good looking!  Even Ray commented on his looks!  But I guess good looks are a criteria when you're a plastic surgeon.  He likes to talk, explain all the research he's done, his approach, the doctors he's worked with, his time at Boston Children's Hospital, etc. etc.  He's obviously very intelligent and the head of plastics for a reason. 

Dr. Rogers worked with Dr. Proctor who is in this video. Explains all the different types of craniosynostosis, treatment, etc.  Great video:

http://www.youtube.com/watch?v=8l53va7jAzI

Can you feel the brother sisterly love? They melt my heart every single day!  Bryce is so in love with his big sister and as you can see the feeling is mutual.  They're so sweet together. 

Bryce weighed 17lbs 8oz yesterday.  10 days short of his 5 month birthday.  He is a tank and definitely fits his nickname, B Chubs.

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