Searching for a Cleft Team...

Well Searching for a cleft team was actually super easy.

The question is who does molding and who doesn't??

Who does it daily?

Who is recommended?

Who has the most experience!

Well we thought that question would be answered easy...

Of Course we live near Houston and what hospital is best in houston for Children?

Texas Childrens Hospital... well we were WRONG...
They did not do the molding... I dont know if they do now but they did not then.
That was such a shock, growing up you always hear that Texas Children's Hospital is the best.

So we reached out to the Doctor that the Maternal Fetal Medicine Doctor referred me to. Dr. Teichgraeber at UT Health Physicians... Made an appointment to meet with them in two weeks.
I was 27 weeks pregnant when we met with them. Immediately fell in love with Dr. T and Ruth! They answered all my questions! As Ruth says I "grilled them" with lots of questions. But I wanted to be ready, I wanted to feel prepared, as prepared as I could possibly be and they sure helped me do that. We knew we wanted to do the molding. We knew we had found OUR TEAM. We were ready. We found the special needs bottles. Talked to the hospital I was delivering at they had the bottles. I met with the pediatrician informed him of the cleft. We told friends and family. We knew everything was going to be alright and fall perfectly into place.

Oh and to add to this note we did all of this while building our new home. Sold our old home and had 15 days to move out, lived with my in-laws for 5 weeks until our house was ready! And I was a full time student. I was so busy but I think it helped keep my brain occupied on something other than cleft research.

When you first find out something is "wrong" with your child, you go through so many emotions. You ask why? What did you do? All kinds of emotions go through your head. I went through my calendar and text messages to see what I was doing during the cleft development weeks. I was making myself crazy, thinking that I did this to my sweet little girl. I had to come to terms with what is is and let it go.
You have some researchers that say it is genetic, some that say it isn't. Some that say its from taking the clomid. There is also the factor there is a 2-5% chance any other children we may have will also have a cleft.  That goes up from the 1% most people have that do not have any cleft issues in their family. I guess until they find out we will just continue to say "The man upstairs is the only one who knows"!!! He is the only one to answer the questions. And apparently he thought Jason and I could handle this and he will only give you what you can handle.

Finding the Cleft

Well I have never blogged before and I have thought about doing this since our sweet girl was born so here it goes.

Jason and I had been trying to have a baby for almost a year. When I finally started my first round of Clomid (a fertility medicine) we immediately fell pregnant on our first round!

 I found out on January 9th we were officially 3 weeks pregnant.

 On March 8th we got the results of the Blood Test to find out the sex of the baby and we were having a Girl.

 Her name would be Adley Elizabeth! 

May 8th we went for our 20 weeks scan, though we never got to see her face because she had her hands in the way!!! When we left the doctor said she wanted to look at her next time to just because she would never move her hands.

Well 4 weeks later we are off to the doctor. My grandmother was with me this time. It was the first appointment my husband had missed he had a meeting at work that day. 

As I lay on the table I am so excited I get to see my sweet little angel again. I love ultrasounds. The doctor is looking and looking and finally she looked at me and explained that she is about 90% Sure that Adley would have a cleft lip. I dont think it really registered with me until I sat up. When I sat up on the table I lost it. I remember how am I every going to walk out of this room and keep it all together until I get to the truck. How am I going to tell my husband? What do I tell him? How do I tell my family? What if she was wrong and that 10% was going to be us? What does this mean? Where do we go? Is she going to be made fun of?......

The thoughts and questions running through my mind at 100mph was craziness. I had planned to spend the rest of the day with my grandma and soon realized I would not be able to do anything else for the rest of the day. I was overcome with emotion. 

When I got in the car I called to tell my husband what the doctor had said. He didn't take the news well either a million thoughts went running through his head as well, and I didn't have the answer to them. So his brave soul immediately turned to google. DO NOT DO THIS.... It was terrible the things people say and the things you see will make you crazy. 

I was waiting to make and appointment with the maternal fetal medicine doctor to do a 3D scan and find out for sure. That is when I finally started searching the web for questions to ask, and things to prepare for. This is when I came across the Cleft page on Baby Center! What a great Forum, these ladies are the best support team anyone could ask for.  Then we met with the maternal fetal medicine doctor and the 3D scan confirmed our sweet girl did have a bilateral cleft lip and she was 90% sure it would involve the palate as well...

So next step is finding a cleft team.