September is Craniofacial Acceptance/Awareness Month!!!

You may be asking...what is craniofacial???  Well.....
Craniofacial (cranio- combining form meaning head or skull + -facial combining form referring to the facial structures grossly) may be used to describe certain congenital malformations, injuries, surgeons who subspecialize in this area, multi-disciplinary medical-surgical teams that treat and do research on disorders affecting this region, and organizations with interest in disorders of the craniofacial structures. Craniofacial surgeons can come from a variety of backgrounds, but most are oral and maxillofacial surgeons, or plastic surgeons who have undertaken subspecialty fellowship training after residency.

Why am I so excited about Craniofacial Acceptance/Awareness month??? Gracyn was born with an isolated cleft palate located in the soft palate. Usually when I mention that Gracyn was born with a cleft palate, I am usually informed how wonderful her surgeon must have been because they can't even tell!  Well...unless you were looking in her mouth you would have no idea LOL because Gracyn was not born with a cleft lip..only an isolated cleft palate. 

We were very blessed to have Dr. Suman Das perform Gracyn's surgery and so far have had NO problems!!!

Here is some info to help you understand (from http://www.marchofdimes.com/birthdefects_cleftpalate.html)

Cleft lip and cleft palate

A cleft is a gap in a body structure that results from incomplete closing of a specific structure during development. Clefts that occur in the lip and palate (roof of the mouth) are called oral-facial clefts. There are two main types of oral-facial clefts: cleft lip/palate and isolated cleft palate.
Some babies have only a cleft lip. However, many babies with cleft lip have a cleft palate as well. These are called cleft lip/palate. Cleft palate also can occur by itself without cleft lip. This is called isolated cleft palate. Cleft lip/palate and isolated cleft palate are considered separate birth defects.
How do oral-facial clefts affect a baby's face? A cleft lip can range in severity from a small notch in the upper lip to a complete opening in the lip extending into the bottom of the nose. The upper gum also may be involved. Cleft lip can occur on one or both sides.

Cleft palate can involve only the soft tissue in the back of the mouth (soft palate) or extend forward through the front of the mouth (hard palate). One or both sides of the palate can be affected.

How common are oral-facial clefts? About 6,800 babies in the United States are born with oral-facial clefts each year (1). This number refers to isolated oral-facial clefts, meaning clefts that are not accompanied by other birth defects. Isolated oral-facial clefts are among the most common birth defects in this country (1). About 70 percent of babies with oral-facial clefts have isolated clefts (2).

About 4,200 babies are born each year with cleft lip/palate (1). This birth defect occurs more often among people of Asian ancestry and certain groups of Native Americans than among Caucasians. It occurs least frequently among African Americans (2).

Isolated cleft palate occurs less often, appearing in about 2,600 babies each year (1). Unlike cleft lip/palate, the risk appears to be similar across all racial groups.
There also are about 400 syndromes in which babies have some form of oral-facial cleft along with a wide variety of other birth defects (2). The diverse problems of these babies are not described here. All babies with oral-facial clefts should be thoroughly examined by a doctor soon after birth to diagnose or rule out other birth defects. When Gracyn was born she was dx as having pierre robin sequence, in December 2006 a genetist (Dr. Omar) informed us that no she did not have PRS and instead had an isolated cleft
When do oral-facial clefts develop? These birth defects occur very early in fetal development. The tissue that will become the lip usually joins in the middle and fuses by about 5 to 6 weeks after conception. The palate forms in a similar manner at about 7 weeks. A cleft occurs when these structures don't close completely.

Babies and children with oral clefts may have:

• Feeding difficulties --Gracyn had difficulty with this and it was one of the hardest things we had to deal with!  I can remember crying right along with her because it could take an hour to get an ounce down her.
• Frequent ear infections and hearing loss (which often resolves with treatment) Gracyn had flat tymps until she recieved tubes at 5 months of age
• Speech difficulties VERY blessed to have Kara (a great friend, fellow SLP who is one of the best in cleft children!)
• Dental problems

If you know someone who has a child that was born with cleft lip/palate please let them know they aren't alone.  Here is another great site for parents and professionals regarding cleft lip/palate
http://www.cleftline.org/

The king and the queen

Growing up I always had dreams of prince charming riding up on his white horse....ok, ok I know that is a fairy tale but don't all girls dream of fairy tales!  As soon as I was able to date I always seemed to have a boyfriend....almost to the point of I didn't like to be alone I guess.  I will never forget one of my best friends telling me to take 3 months for myself after a BAD breakup before I went on a date with anyone else.  I did and in that time I got a chance to spend time with my girlfriends and enjoy my time alone.  Who would have guessed that 3 months almost to the day I would meet my prince ;)

2 1/2 months after our first date I went out to eat with my 2 best friends and had no idea that when I arrived home to my apartment that my boyfriend of 2 1/2 months would be waiting for me and that by the end of the night I would be engaged.  My dad had passed away when I was 13 and it had been me, my brother, my mom and my grandmother for as long as I could remember.  Well..he had asked my mom and my brother (who was only a teenager at the time) for my hand in marriage and that meant so much to me!

During the 9 months of our engagement not only were we working full time and planning a wedding but also building a house.  Yep...I have a habit of going full force into things! Just ask my friends LOL! 



We have been married 10 years and to say that our marriage is a fairy tale would be a lie LOL!  We have been through a LOT in our marriage that many people never have to go through but in the end it has made our marriage stronger.

I'm not going to lie since this is a blog for my feelings and ramblings so I will say it like it is.  This marriage almost ended last year, to the point where I had the papers in my hands and all that was needed were signatures.  My friends and family know what happened and what I went through last year.  All I will say is that I learned a lot last year and the main thing is I am a strong woman and I have the Lord to thank for that.  If I wouldn't have had his presence around me (because there were many times that he had to carry me) and my friends and family that he blessed me with I would not have made it through last year.

In the end I learned a lot and for that I am thankful.  I wouldn't wish that type of pain on anyone but I also want others to know that marriage isn't easy.  Love isn't easy.  Sometimes you have to let go and sometimes you have to fight.  Always remember that the LORD, your true friends and your family will always be there when you need them...no matter what.

So...the king and queen have had 10 years of marriage that have resulted in a beautiful 4 year old princess and the fairy tale is still continuing....well our version of a fairytale which includes love, understanding, forgiveness and sometimes arguing...because I am hardheaded and have a tendency to say it like it is...but isn't that why my friends and family love me!!  :)

Our Miracle

I have always loved children and for as long as I can remember I couldn't wait to be a mother!  On March 10, 2001 David and I were married and in the fall of 2003 we decided it was time to start a family.  The Lord had other plans...he didn't think it was time for us to start our family yet.  I can't even begin to explain how hard it is to want a child so badly and then being told that you may not have one.  So we tried clomid and then femara to attempt to conceive a child.  After seeing a specialist for infertility we attempted our first AI treatment in the fall of 2005 with negative results.  The sadness and despair I felt during those years was awful but I kept telling myself that the Lord knew the right decision.  I ended up having an emergency gall bladder surgery in December 2005 and we decided to wait for our second AI until after I had recovered.

One weekend in February 2006 I got very sick and I had the strangest feeling that I was pregnant.  I can't even begin to tell you how much money we had spent on pregnancy tests during those years but this was a different feeling than I had ever had.  That Monday I woke up and there it was...a very light positive.  I can remember all the GREAT ideas I had come up with for telling David when we finally got pregnant.  Well.......when you have been trying for 2 years and you FINALLY see a positive those thoughts go out the window!  I walked into the kitchen that morning before work holding the pregnancy test with tears in my eyes and a look of astonishment on my face.  By that evening it had been confirmed by the doctors that I was indeed pregnant.

Over the next 9 months I was told that our sweet baby girl was as healthy as could be, even though I ended up dealing with high blood pressure which resulted in me going on bed rest at 36 weeks and having Gracyn at 38 weeks.  During those 38 weeks I gained 100 pounds which still amazes me!!!  Of course during my epidural they had to take a break to get a longer needle due to the amount of fluid!  Check out my poor feet:


On October 30, 2006 I went to the doctor to check my blood pressure and due to the fact that it was not going down I was told to be back at 5:30 the next morning to have a c-section.  Yep....October 31, 2006 I would be giving birth to our beautiful girl

Gracyn Bernice was born at 8:09 am weighing 7lbs 9oz.


When Gracyn was born I will never forget David coming up to me and asking me what a cleft palate was.  A cleft palate????   Yes...our beautiful daughter was born with an isolated cleft palate which is visable in the above picture. As you can see she was not born with a cleft lip, only a cleft palate. Gracyn was born on Tuesday October 31st and stayed in the NICU until the following Saturday when she was allowed to be placed in a room with me. 

If you don't know much about a cleft palate don't worry...I didn't either and I am a pediatric Speech Language Pathologist.  But I was very blessed to be working at UMC at the time and had a great friend/co worker who specialized in cleft palate speech.  I can't begin to tell you the helplessness I felt the first few days after birth.  My blood pressure would not go down even after birth so I had to stay in the bed the first day and unable to visit the NICU and when I was finally able to visit I couldn't stay long due to complications I was having.

We were blessed to have a wonderful speech path named Mary Lou who helped us tremendously with feeding.  Due to the cleft palate Gracyn had trouble eating and we had to go through many different types of bottles to find the correct one that would work for Gracyn.  Mary Lou didn't give up, she kept trying even to the point that she would go home after work to let out her dogs and then come back to work with Gracyn and her feeding some more.  We call her our angel and we are so blessed that she was placed in our lives. 

On Monday November 6th after a LOT of begging and crying on my part (I wanted to go home!) we were finally released to go home.  Gracyn had to wear a monitor the first year of her life due to oxygen issues and of course we had some crazy feeding issues we had to deal with but I wouldn't trade it for the world. 

I am so blessed that my grandmother was able to meet Gracyn.  Unfortunately Bebe left this earth when Gracyn was only 4 months old but I am so happy that Bebe and Gracyn got a chance to meet.  This was taken the day before Bebe passed away:


In June 2007 Gracyn had her cleft palate surgery and of course it didn't go the way it should!  The one night in PICU turned into 3 in PICU but the Lord was watching over our little miracle and the surgery was a success.






So...Gracyn is definitely our miracle in more ways than one.  I could not imagine my life without her and as I watch her grow into the almost 5 year old that she is now I am constantly amazed by how much she went through her first year of life.  When you look at Gracyn you would never know what her first year of life consisted of.  She is the light of my life!

Once upon a time

Once upon a time there was a little girl who dreamed like all little girls of falling in love, getting married and having children.  Like many young girls she went through many frogs before she found her prince.  Many people would call their romance a whirlwind romance and many believed that it would not last.  2 1/2 months after their first date they were engaged and 10 months later were married.  Everyone was worried about the fast romance but one person....a beautiful queen who had been around for many years and had been married 50 years to her own prince...Bebe was a very special person who was an amazing lady who shared stories of her own whirlwind romance with this young girl.

Early on the young girl learned that life is not easy and many rocks and sometimes huge boulders will be thrown in the way to make you stumble and fall and sometimes you don't even want to get back up.  The marriage had many of those rocks and boulders in them including an awful car wreck, deaths of loved ones, infertility, birth defects and even things that could cause fairytale romances to crumble.  One thing she learned was that no matter what as long as you had true friends that stood beside you no matter what happened, family that loved you and the Lord in your heart you would be able to crawl over those boulders and jump over those cracks.  Sometimes you may need a hand to help pull you over the boulders and sometimes you may need someone to carry you over the cracks, but you can make it through!

As you may have already figured out.. that person is me and I have decided to start this blog to give myself an outlet to express my thoughts and also maybe help others who have been through some of the same things I have been through.  My name is Amy, my prince is David and our sweet little princess is Gracyn.  She is our life and as many like to point out she is definitely a mini-me.  I know that I can not always protect her from the boulders that will be thrown in her way but she will always know that she is loved.