Meeting the Genetic Counselors

     The genetic counselors were AMAZING! The lead genetic counselor's name is Debbie, and from what I have come to understand, she won't be practicing medicine in any way, but her job is to basically be my high-risk pregnancy tour guide! My sister, Tammy, went with me to the appointment because Joe had to work. It was great that she went with me because the genetic counselors needed a VERY detailed family history, and the parts I didn't know, she did!
     We allowed an intern to sit in on the process, and she was also fantastic! (I have always allowed interns and students to sit in on any medical visits or procedures I have ever had; being shy is something that no longer exists after having children, and it's always a great thing to help others learn!) They mentioned the possibility of doing an amniocentesis, but agreed with me when I declined doing so because they agreed it was unnecessary to bring those risks to the baby just to confirm what we already know.
     The intern also sat in during my high resolution sonogram. During the sonogram, the stenographer was also amazing!, they confirmed everything that we suspected before: The open neural tube, the myelomeningocele, the chiari malformation, and the hydrocephalus. The new information we gained from the sonogram was that her left foot is now confirmed to be a club foot, and we now know that the gap in her spine and the myelomeningocele begin at the L2 and L3 vertebrae of the spine. We also know we will not be having an in-utero surgery, which is good news to me, because as far as they can tell, we will be able to carry her full-term! Which gives little Mira the best odds of recovering from all of the battles she faces because she will be fully developed before she starts having any surgeries!
     Unfortunately, many of the questions we have cannot be answered until after she is born. We know she will definitely need at least one back surgery and at least one brain surgery to have her shunt placed. However, we do not know if her other organs are compromised, or will require surgery, we do not know if her club foot will need surgery, we do not know if her chiari malformation will need operated on, and we do not know how many surgeries she will need, or how long of a period they will span across. We also do not know if she has leg function or if she has any brain damage.
     What I do know, which this is very hard to swallow but I am trying, is that I will have to deliver at one hospital, and right after delivery, once Mira is stable, she will be transported to another hospital to start her care and undergo her first surgery. It is VERY VERY difficult for me to be okay with letting her go, let her leave where I am, right after I have her! I hate knowing that I won't be able to be with her during her surgery! However, I KNOW this is in her best interest, and I know this situation is necessary in order for her to receive the best possible care she can get! This is why Joe will be going with her everywhere she goes after she is born. My sister, Tammy, said Joe is going to be the baby sitter, and Tammy is going to be the mommy sitter!
     Once she is born, we are going to have so many of our questions answered, so I guess this is the calm before the storm. We'll just have to enjoy the silence for now, and prepare the best we can, and then be ready to have information falling out of our ears once she is born and start getting ALL of our questions answered and then some!
     I do know that from now on, all of my prenatal care will be transferred to Pittsburgh, and that my genetic counselor, Debbie, will be making sure to arrange meetings with Mira's future surgeons during these visits, and will also make sure Joe and I get to meet all the nurses that will care for Mira, along with giving us tours of where Mira will be staying. She will take us through the NICU, get us familiarized with the NICU security protocols, and let us become as comfortable as we can with all of the environments we will be put in.
     I am VERY happy with the people I met, and I have a great feeling about the care Mira and I will receive there. I am feeling very positive about the way things are going, and I feel like Joe and I have a really good understanding of what we need to be preparing for. The wind is in my sails, and I am ready for this journey! I feel like Mira is going to impress us all, and that we have found a team of great people to ensure her care and future!