I've been meaning to write this blog post for about 2 months, but life has been a whirlwind so far this year and it just hasn't happened. It's been over 2 years since I posted and I can't say there won't be another two years between posts but I felt like this was something I wanted to share before our new little one arrives.
On Dec 16th we had a lot to look forward to, it was Brett's last day of work before his 3 weeks off for Christmas break, we had our ward Christmas party and the best part our 19 week anatomy ultrasound. Lucas and Avery were so excited to see their new little baby brother or sister and we all couldn't wait to find out if we would be adding another boy or girl to our gang of cuties.
Pretty quickly we were told, to Lucas' delight and Avery's temporary dismay that we would be having another little boy! Both Brett and I were a little surprised because we had started to feel that we would be having another girl, but we couldn't be happier to add another little man!
As with Avery the baby gave us a hard time showing us all the images we needed, they couldn't get all the images of the heart, face and feet and after quite some time they said we would just have to come back. No big, deal we did the same with Avery. We left, super excited and called to tell Grandparents that the boys would now be winning on the grandchild numbers!
We had a normal Steenblik weekend and woke Monday ready to rest and get some chores done around the house. That morning I missed a call from the ultrasound office but assumed they'd call back, they did, right before we were about to take Lucas to school. I answered assuming they wanted to schedule another appointment to get the missing images, instead the voice on the other end of the phone casually said "I'm calling to schedule a follow up ultrasound and consultation for your babies clubbed feet." And that's how we found out that our little man will be born with Bilateral Clubbed Feet (BCF).
A big miscommunication had happened in the office which led to us being told this pretty big news over the phone, by a receptionist who assumed we already knew. The specialist wasn't in office when we had our ultrasound so the technicians had the receptionist send the information over to my OB office, but they sent it to the wrong doctor, she assumed we had been talked to and put the order for the follow up ultrasound in. My Dr. didn't even find out about the clubbed feet until she was about to walk in to my next OB appointment two days later. She was mortified at the situation. Once we were told over the phone the specialist briefly talked to me and said we needed to do genetic testing and there could be any number of other issues with our little boy, but they couldn't get us in for another 10 days. So we had the long wait over Christmas to find out what else we might be facing. Luckily I did have that OB appointment scheduled and she was able to comfort me by looking over the results we did have and assure me there was no reason to think there would be any issues other than the clubbed feet.
So on our wedding anniversary we went for our follow up ultrasound, the specialist looked over our little one and couldn't see any physical markers to indicate any other issues. BCF also happens to run in Brett's family, with his Dad and brother both being born with BCF, this made the specialist confident that it would be an isolated incident for our baby too. We opted out of the genetic testing and while we cannot be certain there won't be other issues when he is born, we are confident that he will be born with no other issues beyond his special baby feet.
So what does this mean? It means casts and braces. Within the first week of being born the baby will have almost full leg casts applied weekly for approximately 5 weeks to re-position his feet. Once they are in the correct position he will have a small surgery to cut his achilles tendons, and then have another set of casts that will stay on for 3 weeks. If all goes to plan after those 8 weeks he will move on to boots and bars (BNB). He will have to wear them for 23 hours a day 7 days a week for approximately 3 months. After that we will transition to wearing the BNB only during sleeping hours, this will continue until he is about 4 years old. This is the ideal scenario and we are hopeful that it won't be anymore complicated than that. The method we will be using is called the Ponseti method, named after Dr. Ponseti, it is the same method that was used on Brett's Dad and brother, and while it has had a few tweaks here and there over the years, it worked just great for them and hopefully will for us too!
We feel very blessed to have family members who understand and have been through the same thing, we also have friends locally who have had babies with BCF who have been a great resource and support. Additionally we happen to live in the same town as the best clubbed feet doctor in the state, he was trained by Dr. Ponseti himself.
While we are little sad that we won't be able to do things like regular baths, use footed jammies and will need a few unexpected items that we weren't planning on, as well as medical treatment, we feel very blessed that his feet can be corrected. He should be chasing after his big brother and sister on a regular schedule and we can't wait to see those little feet go! He is already a very active boy, so I do worry that the restrictions of movement caused by the casts and BNB will be hard for him, but we will do our best to make him comfortable and happy.
We love our little guy so so much and can't wait to meet him! I partly wanted to share this update because when he is born I don't want people to be too concerned with what is wrong with his feet, but rather focus on his inevitable adorable jowls and clone like look of his siblings. Because lets face it, Brett and I make cute kids! Haha!
Sorry for the long long post, but here are some pictures of out little one and his Papa as a baby with his casts for you to enjoy!
PS. We told Lucas his baby brother will be born with Ninja skills, so now he is watching Ninjago and perfecting his own Ninja skills to he can keep up with his brother's special feet! :)
Papa with one cast, apparently one foot took longer to correct than the other. |
A 3D ultrasound showing our little guys turned in feet. |
He had cheeks at 20 weeks! Haha! |
Papa with his casts on! |