Discharged 9-21-18

We're out of here!! It's a personal record.. 3 1/2 hours after being admitted for surgery we are heading home! She had a really loose tooth going into surgery so they ended up pulling I out after they sedated her. She came out with her tooth and a dollar in a specimen jar. Tooth fairy gets to come twice today! She is so excited to not have that expander in anymore and she has no pain meds on board and is feeling great! She's our hero!!

Out of surgery

She is out of surgery and her surgeon said everything went great. He doesn't even think she'll need any pain meds! We will get to head back and see her soon! Thanks for all of the prayers!

8th surgery underway 9-21-18

They took her back about 10 minutes ago. They anticipate it to take around 30 minutes. Prayers for our baby girl and her doctors!

8th surgery tomorrow 9-21-18

Having fun at soccer

The day has finally come to remove the palate expander that they put in back in May.  It has been in for 4 months and 10 days.  The surgery is scheduled for 7:30 am.  It should be a quick and easy procedure.  They usually don't do this procedure in an operating room but since they had to pin the expander onto her tooth they will have to sedate her to remove it and since her airway is so compromised she will need to be intubated.  They expect it to take around an hour total.  We are hopeful that we should be able to go back home tomorrow afternoon but we will wait and see how she is coming out of anesthesia and go from there. There is always a risk with anesthesia especially when her airway is so tiny and this will be the 8th time so please say a prayer that everything goes smoothly tomorrow.  As always we'll keep you updated when we can! 

Goofing around with Dad at the store

Happy 6th Birthday!!!!! 7-23-18

I can not believe she is 6 years old!  Time is sure flying!  She had a wonderful birthday party with a bunch of her friends.  They had a blast playing in the park and then breaking open a pinata!  They even got to ride in the horse drawn wagon that goes around town.  They all had a blast!

I can still remember the day she was born like it was yesterday.  I had a scheduled c-section since our first daughter had to be born via c-section.  It was all rainbows and butterflies until they pulled her out and then the operating room went dead silent, I heard Braylee crying so I knew that wasn't why they were all silent.  Jeff went over to see her and all I hear is my OB in a very worried voice telling them to get samples of this and that and send them off for testing STAT.  Shortly after all of that Jeff comes back over and I can tell something wasn't right by the look on his face and I asked him what is going on, he didn't say much, just that Braylee was ok.  Then the pediatrician comes over really fast and tells me that Braylee has webbed hands and feet, a cleft palate, and her forehead is protruding, then she ran out of the room.    Jeff was not very happy with her at this point because turns out he didn't want to tell me anything until they had finished closing me up.  Thinking I would panic or freak out on the operating table.  I told Jeff to go with Braylee and that I would be fine, I just wanted him to be with her.  They finish up and take me to post-op where I got to see Braylee for a total of maybe 2 minutes before they rushed her off to get a CT. Jeff tried to go with Braylee to the CT but they wouldn't let him in so he came back to me and we just sat there, I'm not really sure we said very much to each other at that point.  The worst case scenarios just running through our minds of what is going on with our daughter.  We get back to the room and finally get to see Braylee again and get to looking at her and she's breathing on her own and doing everything that a newborn should. We fell in love instantly and knew she would do great things.  The pediatrician comes in and says that she isn't sure what syndrome she has so she was going back to the office to do some research.  At the same time Jeff is already on his computer doing his own research and after a couple of hourse he came up with it's most likely Apert Sydrome.  Braylee was born at 1:03 p.m. and we finally got some answers from the doctors around 6 p.m.  One of the other pediatricians in the practice came and told us that he has been going over everything with Dr. Wheeler and they are pretty certain it's Apert Syndrome and they have to send some blood samples off to North Carolina for testing to be sure.  He said that it is very rare and that in all of his years of practice he has only seen it once back in the 70's; 1 in every 160,000 births. It was a whirlwind of a day and one that we will never forget.  I don't think anyone who was in that operating room or the maternity wing will ever forget either. It has been a whirlwind 6 years ever since.

It has been one our busiest summers with buying a new house, selling our old one, moving, surgery,   post-op surgery check-ups in Salt Lake City, attending our first Children's Craniofacial Association Retreat (more on that in a minute), and then trying to find some time for fun in the midst of all of that. Hence why this post has taken me over  month to write, writing a little bit here and there.  We are happy to report that everything is going smoothly with her expansion.    We  had a couple of issues after this surgery; one was she woke up one morning and her whole right side of her face was swollen.  I took her to her pediatrician and we still aren't quite sure what happened but it had to be some sort of infection (sinus or tooth abcesss). They put her on a broad spectrum antibiotic and it cleared it up.  One little setback is with this surgery it has caused her palate to concave.  Which can happen with this type of surgery. We talked with her plastic surgeon at one of her check-ups and we will play it by ear after the expander is removed and see if it will need to be fixed. Her surgery has been scheduled to remove her expander for September 21st.  Now this isn't a big surgery per say but since a bracket on the expander broke when they were putting it in, they had to pin it to her tooth.  So now she will have to go under anesthesia and be intubated because of her compromised airway to remove that one little pin.  Making it her 8th surgery.

She lost her first tooth the other day and has 3 more that are going to come out soon!  If they aren't out by the 21st I can almost guarantee they will be when they intubate her.

Jacob Tremblay aka Auggie

Millie Davis aka Summer

Back at the end of June we attend the CCA Retreat in Salt Lake City, UT.  Here we got to meet other amazing families who have craniofacial syndromes or diagnoses.  This was one of the most amazing experiences we have ever done.  It was so great to officially meet some of the families we have grown to know from social media and also make new friends.   Usually when we walk into a busy place with a lot of people around I go into protector Momma mode and I can always see those stares and whispers, and the kids looking scared.  Well as soon as we walked into that hotel I didn't feel the need to be on protector mode because it was full of people like us, who know what we go through and know that these kids are amazing and are just kids.  You could tell that the older kids were at ease and could just be themselves and have the time of their lives. Talking with the adults that have craniofacial differences was so amazing.  They gave all of us that have younger kids hope. Hope that they can really grow up and live amazing independent lives and follow their dreams.  Something that we are sometimes afraid to question in the midst of all of these surgeries.  I just can't explain how much we needed it and how great our CCA family really is!   We also go to meet some of the cast from the movie "Wonder". They are the sweetest kids and they truly had an amazing time playing and talking to everyone at the retreat.  We have already booked our slot for the retreat next year!

Ellie McKinnon aka Charlotte 

CCA group picture time

As usual nothing less than EXTRAORDINARY 5-22-18

Today is 11 days post-op and she had her first check up with her orthodontist.  There has been a lot of movement and change going on and we were anxious to hear what he had to say.  Going into this surgery her nasal passage was about 95% blocked by bone and she could barely pass any air through her left nostril.  Well as of today I am happy to report that she was starting to move more air through the left side.  He said that it is still pretty swollen so we should see a little more improvement on that as the swelling starts to decrease.  He then had her open her mouth and he was amazed at how much space she had!  We went into this appointment expecting to turn for  4-7 more days and come back in a week for another progress check-up but her progress has been so amazing and she is where he wants her to be so we get to stop turning and don't have to come back for a month!!! All we have to do now is sit and wait for the bone to grow and fill in which should take around 4 months with a check up being done once a month.  Then sometime in September we will be removing the expander.  

Before and after

Before and After

Each surgery is hard for the obvious reasons but I think one of the hardest parts is knowing that your child's appearance is going to be different than when she went in.  We love her just the way she is and we  don't ever want her to change so we have to remind ourselves that each surgery is to help her have a better quality of life and is for the best.  What we have noticed most with this surgery is her smile has changed. It is bigger and more open.  It has changed and it is beautiful just like her as was her old smile.  Just something that in the near future we wont' even notice is different anymore.  We will miss that old smile but we still have our amazing Braylee and that is what matters the most. 



We will not fear change for change can bring amazing things

HOME!! 5-12-18

We made it home!  Braylee did great last night and today on the trip home she did great also.  We are going to stay on top of pain management and hopefully be able to start and wean her meds a little bit tomorrow.  She is pretty swollen in the cheeks as to be expected.  Tomorrow is day 2 so the swelling could get a little worse before it gets better.  We have made 4 turns on her expander and she has handled in like a champ.  We have to turn it 2 times in the morning and 2 times at night for the next 2 weeks or until we have reached where they want her to be.  We will be returning to SLC  every 7-10 days for the next month for check-ups.  We'll just keep on keeping on and get her over this hump and get her back to her normal self.  Thank you everyone for your thoughts and prayers!!

Discharged 5-11-18

Braylee was doing so well they decided to discharge us tonight instead of tomorrow! We're back at the hotel and will hopefully get some good rest tonight minus waking up to take meds. We'll head back to Wyoming tomorrow. She amazes us every time!!

Out of surgery

Surgery went great! We may get to leave the hospital tonight depending on how she does these next few hours. If we do we'll be staying in the hotel and not far from the hospital. Right now we're just trying to stay on top of pain management, fluids, and make sure her oxygen SATs stay up. Thank you everyone for the prayers!!

7th Surgery Underway 5-11-18

Braylee went back into surgery at 12:40.  She went with NO happy juice, she is such a rockstar!!!! They anticipate it to take 3 hours.  Please pray for our baby girl and her doctors.

7th surgery tomorrow

Well tomorrow Braylee will go under the knife for the 7th time.  She will be having Lefort 1 which will be expanding her palate and nasal passages. She is scheduled to start at 12:45.  We wish it was an earlier time but with it having to be rescheduled a couple of weeks ago we got put where they could fit us. We'll just be thankful it's not later than it already is.  She just gets to have some sprite for breakfast and hopefully that'll make her happy and make up for not getting to eat!

Today we got to celebrate her younger sister Maddee's 3rd birthday a couple of days early at the zoo so Braylee can enjoy it and be able to eat pizza and cupcakes tonight before she's on a liquid diet for a week and then soft foods for at least a month. 

We'll update more when she heads back into the OR tomorrow.

5 year CRANIOVERSARY!!!!!!!

Happy 5 year Cranioversary!!!  It may seem weird to some to celebrate a cranioversary;  this journey with Apert Syndrome started when Braylee was born but to me it became more real when she had her very first surgery. Which happens to be the biggest one to date.  Five years ago Braylee was only 6 months old when her very skilled surgeons took her into the OR to perform a Cranial Vault Reconstruction to open up her coronal sutures that were prematurely fused together. So they took her skull off, broke it, and then put it back to together like a little puzzle to make room for her amazing brain to grow. Today always brings a whirlwind of emotions, happiness, and thankfulness.  But it also brings us back into reality and the craziness that comes with Apert Syndrome.  Braylee is such a happy, bubbly, and funny little girl.  She makes our days brighter and better.  Apert Syndrome is a part of her but it doesn't define who she is.  She has no limits and we will do anything to help her along the way to make her life better and more enjoyable.  She is going to go places and do amazing things, I just know it.

We have scheduled her 7th surgery for April 20, 2018.  This surgery is called the Sarpe.  They will go in and cut above her permanent teeth and insert a device to expand her palate and it will also widen her nasal passage some too. We will be turning this device for 4-6 weeks then we will stop and wait for the bone to grow and fill in where it has expanded.  This surgery will give her more room for her teeth and hopefully help with her airway.  We will be traveling to Salt Lake City a lot for check ups after this surgery.  They have to make sure everything is moving how it should.  So we will have to travel once a week for the first 4-5 weeks and then it will become a little more spread out after that if everything is going as planned.  She will be on a strict soft foods diet for at least a month.  Challenging me to come up with a variety of different meals.

We had an amazing Christmas and New Years with family.  She is enjoying her last year of preschool and couldn't be more excited to start Kindergarten in the fall.  It is snowmobile season so she has been spending as much free time as possible driving her snowmobile around and doing "tricks".  She loves her dance class and dancing all around the house with her sisters.  Enjoying life just like any 5 year old.