Updated: Jun 20, 2018
I am convinced that God puts people in your path for a reason. This week was filled with God moments, and we met some fantastic people. This week we started to see how our sweet boy was already getting us connected with people we would never have met.
When I come across something, I know nothing about I can't help but research until I know all that I can about the particular topic. Week two was filled with research on a variety of things:
• Newborn photographers
• Ear reconstruction
• Associated Syndromes
• How often can you use an ice pack for postpartum healing?
• Heart defects associated with ear development
• Kidney abnormalities related to ear development
• Doctors familiar with Microtia
• Microtia parents support groups
• How many times is a baby supposed to poop per day?
• Just because my child doesn't have an open ear canal can he hear?
The list goes on, but I will stop there :) -- We found the answers to all of these things and got connected with some pretty incredible people this week.
The main stop of the week was to see Dr. S., a pediatric Facial Plastic surgeon specializing in Ears. Sitting in the waiting room of a pediatric facial plastic surgeons office was overwhelming. There were children there with extreme cases and others that you were wondering why they were there. It was a wide range of people from all walks of life, but somehow in those moments when you are waiting to be seen these other parents and children feel like your family. You can see the stress on people's faces but when you make eye contact with a parent sitting across the waiting room form you its like you are both saying, "we are in this together."
Dr. S has been in facial plastics for years but only recently began to take on cases of ear reconstruction. She was very kind but very honest. She told us how many patients she had seen and admitted there were more qualified doctors for ears throughout the country. She explained how the process works and what conferences to try and get to for more information. She described the difference between the two types of ear reconstruction surgeries and even provided us with the names of the two best doctors for both types.
• Dr. L: A doctor based out of California specializing in PIER Ears. This type of ear has a synthetic framework and uses the body's own tissue to create an ear. Operations can be done as early as age 4 and only require one surgery.
• Dr. B: A doctor based out of Texas specializing in Rib Cartilage Ears. This type of ear uses the body's own rib cartilage that is removed from the ribs and formed into the shape of an ear. Operations can't be done until age 5-8 and require 3-4 surgeries.
The biggest eye-opener of all was about his hearing and the missing external open hole to his ear canal. There is a 50/50 chance that Nolan's inner ear is developed. He could have all the parts of his inner ear behind the skin on his Microtia, or he could have nothing. Either way, opening the hole is becoming a dated operation. Many children do not even qualify for the canalplasty due to facial nerves being too close to where a doctor would need to operate. If the facial nerve is damaged, the face becomes paralyzed.
Instead many doctors and parents are choosing to have their children fitted for a hearing aid earlier in life. The child is then able to have bilateral hearing through a BAHA hearing aid (Bone Anchored Hearing Aid). This allows them to hear clear sounds in both ears at an earlier age and has no risk for the child since there is not an operation. She explained the importance of getting him fitted as young as possible so that the brain can grow, learn, and develop with bilateral hearing.
We appreciated the time she spent with us that day. She taught us so much. Since she is a facial plastic surgeon, she will also be the one to remove Nolan's skin tag on his cheek when he is around six months old. We left her office feeling very hopeful. She assured us that Microtia kids are just like "normal" children and will go on to live very "normal" lives.
Some of our close friends were able to connect us with a family here in Atlanta that has a son with Microtia. This was a complete God introduction for us, and we are still blown away that in week two we were able to talk to a local Microtia family when just two weeks prior I had never seen or heard of Microtia before.
Stacey, the mom of the child with Microtia, and I spoke for over an hour. She was a gift to me that week. She made what was happening feel normal. She told me stories of her son and what they had been through. She helped point me in the right direction of what to do next. But mostly, she helped remind me to enjoy Nolan. To be present during this time with him because he is going to be okay. She has her son as proof.
Her son has had his ear reconstruction and is thriving. He lives a normal life, and you can hardly tell that his ear has been reconstructed. Stacey shared photos with us, and we were blown away!
This phone call meant more to me than I can put into words. I remember hanging up the phone and feeling so hopeful. That 60-minute call is when I started fully accepting the journey that we have started walking.
Our phone call was the first conversation I was able to have about Microtia without crying.
We were going to be okay. We already were.