Perinatologist Appointment #2

This was the hardest appointment I've had yet. From last month to this month the Doctor is now really concerned about is growth. He said since 4 weeks ago, baby hasn't grown much at all. He's measuring really really small at this point which is causing concern. He said many times when babies are born with clefts its in addition to another kind of syndrome. He's feeling because he's not growing like he should be,  he's worried that more is wrong and suggested I get an amnio. He said they will want to test for Trisomy 13.  Trisomy 13 is a chromosomal condition associated with severe intellectual disability and physical abnormalities. Babies with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes, extra fingers or toes, a cleft lip and palate, and weak muscle tone. Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year.  All I did was cry the entire appointment. It was completely devastating. After we left I didnt want to talk to anyone, I didnt want to see anymore doctors or have anymore appointments. I just wanted to be alone. Mac and I ultimately decided we were not going to get an amniocentesis. I knew we were going to have a baby and it didnt matter what may be wrong with him. I didnt make a return appointment with the Perinatologist. I just didn't see the point. I just get more and more stressed out everytime I go to an ultrasound. At this point were just hoping that everything will be ok and that everything will work out like it should.  We did get a picture of this sweet boys face.  Last Appointment we were told that the clefting was on both sides of the mouth (bilateral cleft) but when he looked this time he didn't see an opening on the other side. So were now being told that our little guy has a complete unilateral cleft lip and palate which means its just on the one side.  Which is good news! Mac was born with the unilateral cleating too, so the more he looks like his daddy the better. 

The first few weeks of finding out that our son would have his birth defects, I was obviously fragile and emotional as it all was first sinking in. It was really hard going into baby stores, and looking at baby things or anything related. I would just break down and cry, because it was just all still so fresh, and I was still super fragile about it all. Since then, its gotten better, time goes on and I get more confident and less sad. But the other night Mac and I were shopping at the mall and I saw some baby boy clothes through a window and just got that wave of  fear and emotions back in me. Then Mac whispered from a cross the shoe store and lead my attention over to a little boy (maybe 4 or 5 years old) who was walking down the isles looking at shoes. He was THE CUTEST little boy and he was with his two big brothers. He had a cleft lip. I just wanted to go up to him and give him a big hug and just hold him. I know I sound like a creeper but, Its in those little moments that my fear goes away, I don't feel sorry for my self or want to cry. I feel so excited and so lucky. I get to have two cleft lovies in my life :) We wanted to talk to the family but they disappeared out of the store right after that. They had no idea and will probably never know that by being in a shoe store on a Friday night,  it had an impact on another mom and dad. Just the sight of this little boy made me so happy, and just reminded me how lucky we are to get to have him in our family.