I was a little confused as to why we would need to see a genetic counselor. We already knew our Peanut had something wrong genetically. What good would a counselor be now? The damage was done.
We trusted that Dr. Stewart knew what he was talking about and decided to meet with the counselor, Melonie Michelson. A little over a week later, we met with Melonie and Dr. Haynes Robinson to discuss spina bifida.
Since I am the type of person who wants to be in the know, I brought questions and had done research in order to better understand what spina bifida entailed. I wanted to know what it was going to be like for our child.
This could have gone either way: Either I knew too much from researching, or it gave me a headstart on what our family would face.
The research took its toll. I read information from credible websites and in books, but it became so overwhelming that it took me into a sort of depression. Randy and I discussed the circumstances and decided it would be best if we hid the material and didn’t read into the information from the websites.
Instead, I decided to look at our Peanut as OUR baby, not what does it look like here or there. I was going to prepare for our delivery. You see, every case could be a little different. The spinal cord is a very complex area of the body. One child may have a lesion at the same level as another, but the function of their lower body may be very different.
That’s where our amazing genetic counselor Melonie comes in. I can’t tell you how many times I would call her to ask questions. Akron Children’s Fetal Treatment Center is where Melonie works with a team of specialist to assist families like ours.
I would ask for appointments with these different team members and Melonie would set them up. It was a blessing to have someone make our appointments for us – and be that listening ear for our questions and concerns.
She arranged meetings with a nutritionist, neonatologist, lactation specialist, two neurosurgeons, the Myelo Clinic doctor, his nurse and two pediatricians. She also arranged a tour of the NICU and the Reinberger Family Center. These may seem like a lot of extra appointments and time, but it helped us prepare for our angel.
I’m not sure I can explain the ease of mind we had the day of delivery or during Jordan’s surgeries, knowing these specialists were already familiar faces.
We met the neonatologist Dr. Feick prior to meeting Jordan. We made contact the week before delivery to finalize my questions, and I asked if she would be able to meet Jordan because she was going to be in the middle of rotating from the NICU to the special care nursery at Akron General Medical Center. It brings tears to my eyes thinking of the relief I had, knowing that she took the time to make sure SHE was on duty to care for our baby.
While we were in the room waiting to meet our little man, Liz, the lactation specialist whom I had spoken to once over the phone, made it a point to come in and introduce herself. What a sigh of contentment to see these familiar faces.
We genuinely felt like this was our family and they all truly cared about our son.
In the NICU during the morning team rounds, I asked the neonatologist on service, Dr. Protain, if every child was as easygoing as Jordan was after surgery or staying in the NICU. She said not really. You have some who are, others who are a little more on edge, but a lot of times you can tell by how the parents are.
I can’t say I’m the most calm parent, but between the prayers being lifted up for our little family and the fact that the Fetal Treatment Center helped us prepare for what to expect, we definitely felt calm about being in the position we were in.
So, thank you Melonie, Dr. Robinson, Dr. Hudgins, Dr. Bartkowski, Holly Zeller, Dr. Hull, Jessica, Liz, Dr. Feick, Dr. Blair, Sally, Dr. Stewart, Angela, Rebecca, Mandy, Bonnie, Laurie, Andrea, Lew, Tiffany, and most importantly, our Heavenly Father, who have made the beginning of Jordan’s journey a special one.
Read more about Megs and Randy’s journey through her blog, Labor of Love.