Tuesday, January 29, 2013

Happy one week cranioversary!

Can't believe one week ago we were waiting in the waiting room during her cranial vault reconstruction surgery! Time has really flown by. The swelling has decreased to almost her new normal now! A perfect little round head with tons of room for her smart little brain! She is having a hard time at night but we think it is due to separation anxiety. Since she is  completely calm as long as she is with us and caught up on her meds. I have to say I would have some separation anxiety too if I couldn't see for a couple of days. Completely normal reaction in my book.

Sunday, January 27, 2013

WE ARE HOME!! 1-27-13

Well we have made it home. We are so happy!!! Braylee had a great first night out of the hospital. We will stay on top of her pain medications and hopefully soon she will only need her motrin. One step at a time.

She missed her walker and toys!

Saturday, January 26, 2013

Discharged from the hospital! 1-26-13

Braylee has been discharged from the hospital!!! We will be staying at the hotel tonight just as a precaution since we live almost 4 hours away we want to just take it slow and relax today ! We couldn't be happier that we get to leave the hospital 4 days after her cranial reconstruction!!  One surgery down sadly quite a few to go!
Thank you to everyone for all of the kind thoughts and prayers for miss Braylee.  It means so much to us!

Friday, January 25, 2013

I am a little rockstar!!

Oh where to begin, so much stuff has happened today and great things at that!  Her pain level is soooo much better. She went through over half the day just on ibuprofen! She has stopped crying every time we touch or move her. Just talking, laughing and just loving life. She got to eat some applesauce and loved to have a little more substance in her tummy. Her head is still pretty swollen but that will continue to decrease! She has had to learn  how to hold her new head, which she got it figured out in no time! She is even feeling well enough to stand up and play! Getting back to be her normal self!

Amazing progress! 1-25-13

Braylee had an AMAZING night. She ate great and she even opened her eyes at 2 a.m.!!  She still had a few heart beat problems but her Dr. thinks it is from her pain medication so he switched that up and we will see if it makes a difference. 
Her wrap and drain both were taken off this morning! Her head and suture line look great lots of room in there for her brain to grow! She is awake and talking! We couldn't be happier this morning! It's amazing the difference a day makes!

Thursday, January 24, 2013

Hospital day 3. 1-24-13

Braylee had a pretty rough night. Her pain medicine didn't seem to be doing its job. They have upped her dosage twice now and she seems to be more comfortable! A little after noon she had to go down and have a CT scan because her heartbeat kept suddenly dropping down into the 40's for a couple of beats and then come right back up. They wanted to make sure she didn't have a bleed causing more pressure.  Fortunately her scan came back clean and they said she has tons of room in there! Great news! They think her drop in heart beat is from reflux so we will just keep an eye on it.  The Dr. cut a slit in her wrap this morning hoping to relieve some pressure. It took down the swelling in her eyes and moved down to her cheeks. Mommy and Daddy both FINALLY got to get in some cuddle time for the first time in two days! Braylee hasn't been this relaxed in a few days, she needed the cuddles just as much as we did!!

Thank you to everyone sending her balloons, animals, and flowers, her room shows she is loved by many!!

Wednesday, January 23, 2013

Out of the PICU

Braylee got to move off of the PICU Unit and into the Infant Unit at around 11:00 a.m.!  She is doing great still and FINALLY got to have some pedialyte, which she kept down! Once we realized she would keep stuff down she got to move onto formula! She gets so excited when she gets to eat that her heart rate will jump up to 200+. She eventually calms down and it gradually goes back down. Poor thing is just starved!  One step closer to getting to go home!

She got this great poster with all of her grandparents, aunts, uncles, and cousins healing hands on it!

Hospital day 2

Braylee had a pretty good night. She has opened her eyes but then just goes right back to sleep,which is fine with us that way she sleeps through the pain.  The swelling has increased as expected so her eyes are swollen shut now. She should be moving out of the PICU today! Yay! She is a little rock star!

Tuesday, January 22, 2013

Night in the PICU

She is doing amazing. Hasn't quite woken up yet but we hope she just sleeps through the night. The swelling will increase over the next few days and then start to decrease then we will get to see the results.  She will be staying in the pediatric ICU for the night.  Thankfully mommy gets to "sleep" in the room with her tonight.

Cranial surgery is complete!

So we talked to the Dr. And everything went great! Her head is spherical now and her brow has been moved out about a 1/4 in. We will get to head back and see her here soon!

Surgery

Braylee went back into surgery around 10:30 a.m. they anticipate it to take around 5 hours. Please pray for our baby girl and her doctors!


All ready to head back to the O.R.!

Monday, January 21, 2013

Day before surgery

Well we have made it to Salt Lake City. Braylee had to have blood work done today and the poor thing got stuck 5  times trying to get a vein. She was a trooper for the first 2 sticks not making a peep! She is such a little trooper!
She is going to look like a totally different kid tomorrow.
Surgery is scheduled to start at 9:30   A.M.
Munching on a cracker!

All dressed up and off to SLC we go!

Sunday, January 13, 2013

5 months and Shriners visit

Braylee is doing absolutely amazing!!  She has started to sit by herself for up to a couple minutes at a time!  She rolled over from her back to tummy!  Is lunging forward,  just hitting all sorts of different milestones!    She is learning to cup things with her hands to bring them up to her mouth! We couldn't be happier with her progress!

We started off the New Year with a visit to Shriners Hospital for Children in Salt Lake where they are going to be working on her hands and feet.  This is our first consultation about her hands and feet so we are very glad to have a timeline and kind of a plan in order.  We learned that they would like to straighten her thumbs and separate index fingers around 7-8 months of age, all depending on when her cleft gets done.   So hopefully we can have that planned here soon!  

Shriners has been great and they are a great organization that do amazing things for children and their families! We have some close friends that are Masons and you couldn't ask for better friends.  We can't thank them enough for getting us set up with this organization!

We are getting closer to her surgery date and getting a little anxious but we know her doctors are amazing and she is a strong little girl that will rock this surgery! We are so very blessed to have her in our lives!

Sometimes I get crazy hair! But look how long it is!!


Such a happy girl!


See I can sit up all by myself!


Hanging out before her appointment at Shriners.

4 months

At 4 months old Braylee now weighs, 13 lbs 1/2 oz. which is in the 50th percentile and is 26 inches tall, in the 95th percentile! She got to start eating baby food at 4 months, so we decided to make it a day before she turns 4 months so she could have Thanksgiving dinner with the family.  It has been interesting eating with her cleft palate but that doesn't stop her from pigging out and getting some of those baby rolls :)!  So far she seems to like everything, just hope she keeps that up!

Sometimes it looks like a war zone when we are done eating but she has fun!



Other times it is just flat out exhausting!

3 months

At 3 months old we went back to Salt Lake and had a check up with the plastic surgeon.  He explained that we are still looking at doing her cranial surgery around 6 months of age.  During this surgery they will  remove bones in her skull and reshape it so that her sutures are open and make sure everything can grow properly. Her skull will be held together by metal plates and screws that will dissolve overtime.   They will also move her brow forward, put the tubes in her ears, and if time allows cheek bones; basically giving her more of an eye socket.

She is hitting all of the baby milestones and doing amazing!  Everything that a baby her age should do! She now weighs 11 lbs. 15 oz.  and is 24 inches tall!

Her older sister Charlee  wants to do everything with her and loves her to pieces!

Soon after her 3 month visit we scheduled the first surgery, which is the cranial reconstruction, for January 22, 2013.


Cuddling up on her sister!

Our little Tar Heel!

Our Journey

Before Braylee was born we had no idea  there was anything wrong.  After she was born her pediatricians ran tests including a CT scan and blood tests, and with research they determined that it was Apert Syndrome.  They referred us to Primary Children's Hospital in Salt Lake City, UT where we learned that she is going to need multiple surgeries.

When she was only 3 weeks old we had her first visit to Primary Children's.  We met with the cranial facial team which consists of an E.N.T (ear, nose, throat),Speech Therapist, Plastic Surgeon,  Orthodontics, and Genetics.  They informed us that she is going to need cranial surgery when she is around 6 months old.  They need to open up her sutures so that her  brain can grow correctly.  They will also put tubes in her ears at this time since children with cleft palates are more likely to have ear infections.  Her cleft palate will be fixed around 9-12 months old.  



She gets afro hair everytime she gets out of the bath.  We will see if she keeps the curls!
Rocking the pony at 5 weeks old!!!

About Braylee

Braylee was born on July 23, 2012.  She weighed 6 lbs. 9 oz and was 19 3/4 in. tall.  She was born with Apert Syndrome, which is a very rare syndrome. There is quite a bit of information on the web about this but here is a link for some more information. 

http://en.wikipedia.org/wiki/Apert_syndrome.  

 She was born with the Coronal sutures in her skull fused together, webbed hands/feet, and a cleft palate. We are very blessed that as of right now it is all cosmetically fixable and she can hopefully live a normal life.  There could be more complications that arise from her condition, we just won't know about those until she gets older.