It’s been a week since our beautiful Isabella had her primary lip/nose repair. All I can say is WOW. What a difference!
This photo was from Sunday. Since then the glue has come off the outside of her lip and basically the only thing left is just a little bit of a blood booger that is stuck to the dissolving stitches on her nose.
She has been sleeping fairly well and eating basically just like she did before surgery. She had a bottle within an hour of surgery being done and with the exception of a few bad feedings here and there on Thursday night and Friday, she’s been back to basically normal since Saturday afternoon. Don’t get me wrong, she still had her moments, and still needed a ton of cuddle time, but for having a MAJOR surgery, it was incredible to watch.
While she’s obviously looking a bit different, her personality is still 100% there…I mean look at this picture of her…
She’s totally giving me a “Dad, please stop taking so many pictures of me…I’m just trying to enjoy my fingers and make this pain in my bottom gums stop. I’m teething…leave me alone.”
Or her super dramatic sleeping position…
So one thing I wanted to try to explain with this blog is what is to come in the future.
More surgeries – at a minimum…2…more likely…way more.
This surgery simply attached the lip together and formed her nose. Nothing else was done during this surgery (well technically she got tubes in her ears…but that was easy.).
At about a year old she’ll have her primary palate repair surgery. This will bring together the upper part of her mouth and cut off her mouth from her sinuses. If you haven’t googled what a cleft palate looks like just imagine eating and absolutely everything going up your nose (and then out your nose) without a laugh required. They’ll bring those two sides together and she’ll have a full roof of her mouth.
Sometime between 5 and 9 years old she’ll have a bone graft using bone from her hip and they’ll connect her gums (take a look at the split screen shot above and you can see the right side of her gums…those are still not attached to the left side) and place the bone within it to ensure that her adult teeth have a place to anchor.
In addition, every cleft cutie is a bit different when it comes to growing and revision surgeries. I’ve seen stories of 16 surgeries by age 16, and some that have way fewer. That will all depend on her, both physically and what she wants for herself down the line.
One of the things that we heard a ton of at the beginning was “Well modern medicine is incredible and they can fix that easily.” While it is accurate (I mean look at that picture…she’s amazing and I can’t believe they did that.)…it’s also a very simple way to look at it.
While yes, her lip and nose are now formed together and the surgery went great, the road is just starting. This is something that won’t occupy our lives at all times, but will occupy our lives for a very long time…likely 18+ years.
I’ve had so many people ask me in the last week, “Oh, now is she done with surgery?”
It’s not that people are minimizing the issues, it’s that there is a total lack of knowledge by anyone who hasn’t been personally touched by a cleft, or someone within their inner circle of family or friends. Think about it…how many “friends” did your child have at 3.5 months old? Not many…you weren’t introduced to other parents because of dance class or soccer yet. If there hasn’t been a cleft within your family, or that inner circle of friends you’ve likely never seen a baby in person with a cleft lip, you’ve seen the scar from surgery afterwards. There is absolutely nothing wrong with that but I want to change it moving forward.
The internet is helping to change it, and I want to be a catalyst for that change. My ask of you, if you’ve read this far, please share this post to your network. Tag me on Facebook, Twitter, Instagram, anywhere you share it. July was craniofacial awareness month, but let’s make it every month. Help me help explain the journey.
Do I know everything about cleft lips and palates? Hell no! Can I explain what is going on as we go through it. Of course. We are blessed to be so close to the amazing team at the Lancaster Cleft Palate Clinic…if you are moved to do so…make a donation in Isabella’s name. Every time we go there I see kids from infants to young adults that are so happy and full of life. Help me help them.