Shriners

        Our visit at Shriner's Children's Hospital last week went very well.  We felt very at ease from the moment we got there and knew that this was a good choice for us. They had a huge waiting room area that was designed just for kids.  Nintendo game consoles set up, a marble ramp, and big windows looking out over the city.  They even had those fancy pagers that vibrate when its your turn, like they have at restaurants.  Everyone was soo nice, almost too nice!  There were several other children and teens with clefts there as well.  I caught myself starring a few times.  I couldn't help but to look at how great these other kids looked, hoping for the same outcome for River.
         The doctor did a very good job explaining everything to us.  The new way of fixing clefts vs. the old way.  Part of the old way was using the Latham device we choice not to use.  This just confirmed that we made a good choice to put off the surgery and get a  second opinion.  For me it was another lesson in always follow your gut feeling.  My gut feeling was that I did not want a device pinned into his gums and mouth causing him pain.  We were also told that we could achieve the same results of the Latham device by using tape to pull his cleft closer together.  This takes longer and it will be a little longer before he has his lip fixed now, but it is a better less painful option. The special cleft tape we are using is not covered and Shriners does not carry it.  This is going to cost us almost $100 a month. They also assured us that even without the tape or device, he will still get a good repair. We go back to see them in May, and will talk about surgery dates then.
          Before we had even seen the doctor and the nurse was doing our intake she asked us "Are you here for a second opinion or transferring care?" I instantly said "Transferring care".  It just felt right.

I was very surprised that everyone kept asking us where we were from.  They explained to us that many people from all over the world come to Shriner's, they even have a "Shriner's Bus" that comes down from Canada to bring patients.  In fact there was another cleft child there that same day from Utah.  We feel very Lucky to have a Shriner's here in Portland.  For those of you who are not familiar with Shriner's it is up by OHSU.  Below is some info on Shriner's in general. Shriner's Portland is supported by 8 different Shrine temples across the west USA and Canada.  Each Shriners hospital is supported by different Temple's.  The great thing about the Shriner's program is that children can stay in their system until they are 21, they also cover a few tings that our insurance does not.    
The Ancient Arabic Order of the Nobles of the Mystic Shrine, also commonly known as Shriners and abbreviated A.A.O.N.M.S., established in 1870, is an appendant body to Freemasonry, based in the United States. In 2010, the Ancient Arabic Order of the Nobles of the Mystic Shrine, as well as Shriners North America, changed its name to Shriners International, now covering nearly 200 temples (chapters) across North America, South America, Europe and Southeast Asia. ^[1] The organization is best known for the Shriners Hospitals for Children it administers and the red fezzes that members wear. The organization is headquartered in Tampa, Florida.^[2] Shriners International describes itself as a fraternity based on fun, fellowship and the Masonic principles of brotherly love, relief and truth. There are approximately 340,000 members from 194 temples (chapters) in the U.S., Canada, Mexico, the Republic of Panama, the Philippines, Puerto Rico, Europe and Australia. On July 6, 2011, Shriners International commissioned Emirat Shriners of Heidelberg, Germany, as its 194th temple, and took the first steps toward forming a new temple in Mindanao, Philippines. ^[3
Despite its theme, the Shrine is not connected to Islam. It is a men's fraternity rather than a religion or religious group. Its only religious requirement is indirect: all Shriners must be Masons, and petitioners to Freemasonry must profess a belief in a Supreme Being. To further minimize confusion with religion, the use of the word "Temple" to describe Shriners' buildings has been replaced by "Shrine Center," although individual local chapters are still called "Temples."

Surgery Postponed

Well, yesterday was supossed to be the day we had River's first surgery and Latham device put in.  After much thought and research, Justin and I decided to put it off and get a second opinion.  We had been talking about going to Shriners Childrens Hospital since I was pregnant and we first found out about his cleft.  Shriners is known around the world for their work on clefts and they also pay for medical expenses that your insurance doesnt cover.  Having the Latham device put in was not our choice in the first place.  The plastic surgeon had the device made and surgery scheduled before we even had our first appointment and before she had even examined River.  This made me feel a bit like I was backed into a corner.  I wanted more options and the Latham device is not our only option.  After looking into the device further we discovered that it can restrict jaw growth and cause an under bite.  We have only heard wonderful things about Shriners and decided that we needed to go hear what they had to say before we make a final decision.  We see them March 13th and will make our treatment decision then.

 River is growing daily and we cant believe he is almost 2 months old already!  He is such a little sweetie!

What is a Cleft?

Though cleft lip/palate is the most common birth defect in the US affecting 1 in 700 births, many people know very little about it.  Here is some general info I wanted to share.

Cleft lip and cleft palate are facial and oral malformations that occur very early in pregnancy, while the baby is developing inside its mother. Clefting results when there is not enough tissue in the mouth or lip area, and the tissue that is available does not join together properly.

A cleft lip is a physical split or separation of the two sides of the upper lip and appears as a narrow opening or gap in the skin of the upper lip. This separation often extends beyond the base of the nose and includes the bones of the upper jaw and/or upper gum.

Cleft lip and cleft palate can occur on one or both sides of the mouth. Because the lip and the palate develop separately, it is possible to have a cleft lip without a cleft palate, a cleft palate without a cleft lip, or both a cleft lip and cleft palate together. A cleft palate is a split or opening in the roof of the mouth. A cleft palate can involve the hard palate (the bony front portion of the roof of the mouth), and/or the soft palate (the soft back portion of the roof of the mouth).

What causes a Cleft Lip?

In most cases, the cause of cleft lip and cleft palate is unknown. These conditions cannot be prevented. Most scientists believe clefts are due to a combination of genetic and environmental factors. There appears to be a greater chance of clefting in a newborn if a sibling, parent, or relative has had the problem.

An update

As many of you know, River Gregory Thompson entered the world on January 18th 2012.  He was born with a unilateral cleft lip and palate.  He is healthy and happy and just like any other baby except that he has to drink from a special bottle.  He is 1 month old now and has just gotten above his birth weight!  Something that takes most cleft babies a little longer to do than most.  His sisters love an adore him and continue to fight over who gets to hold him and do other things for him.  Jayden is mastering the task of diaper changes, something Brooklyn has not yet attempted to do.
Things are moving quickly as far as his cleft repair goes.  A few weeks back we took him to the dentist to get his mouth molded for his oral device.  The device is called a Latham and will help close his cleft.  It is like a retainer on both sides of his mouth, attached by a bar.  The bar has a tiny screw on it that we will have to turn with a tiny screw driver each day.  This will bring the two sides closer together and make the surgery easier.  He will have the surgery to put this device in on March 7th.  They will have to put him under anesthesia for about 30 minutes.  He will wear the Latham for about a month or so, then they will take it out when they close his lip.

Our Journey begins.....3D ultrasound

        With this being our last baby, I really wanted to have a 3D ultrasound. I also wanted another peek to make sure it was for sure a BOY!  What a cool experience to see your baby before he is born!  Monday November 7th we picked the girls up from school early and headed out to the west side of town for our ultrasound.  The girls were very excited to see what their brother looked like.
          The baby was very low and had his back turned toward us.  We were a able to get a semi-profile shot with his ear and his hand which he kept putting over his face.  It was very frustrating, as we all wanted to see his face.  After about 45 minutes of me moving around and trying to get the baby to move in a different position, the ultrasound tech decided we should come back the next day and try again.
         The next day Justin & I headed out there again without the girls this time. Thankfully baby had moved and we were able to see his face. After a few minutes of watching our little guy on the screen, Justin said "It looks like he has a cleft lip" and asked if that was indeed what he was seeing.  The tech said she noticed that too, but she was not a doctor and couldn't be sure.  My heart sank.  I was hoping deep down that she was wrong and this could not be true.  We left with some photos and our ultrasound DVD.  The next step was to call my doctor.
           After speaking to my doctor, they had the films from our 20 week anatomy scan ultrasound pulled.  Ideally they should have noticed the cleft then.  The baby was low and had his head turned at that scan too, so it was not picked up.  Insurance was not going to pay for another ultrasound, so the radiologist at the hospital kindly agreed to look at our 3D ultrasound DVD and see if he could diagnosis it. Within 2 hours of me dropping the DVD off at the hospital, my doctor had to called to confirm that he did indeed have a unilateral (one side) cleft lip.  Thankfully it is only on one side, but we will not know if the palate is involved until he is born.
          Its been a long week to say the least.  Lots of crying and feelings of hopelessness and despair.  Thoughts going through my mind of why is this happening to us? How could this be?  After many google searches (probably too many) and reading other families blogs and what they have gone through, I don't feel so alone.  This is not the end of the world, and it can be fixed.  Our little man seems healthy otherwise, and we can be thankful for that! This is going to be long journey to say the least, but we will get through it, and love our little man just the same!

      It makes me feel better to talk about it, so I have created this blog to be open and honest about it, and share it with family and Friends.