Cleft Strong

When my son was finally born, after days of labor, I noticed right away something was different about his nose and mouth.  If my brother had not been born with a cleft lip, I may not have really understood what was going on with my son.  I remember yelling repeatedly “is he okay?”, waiting for an answer from the doctor.  Child birth is already a scary thing, once you realize your child will need surgery your heart breaks.  Even though all the doctors tell you “if I had to pick an issue with my child, this is what I would pick” it doesn’t put you at ease.  As a mother, you never want your child to go through any pain.

This post is just to share a little bit about our story and experiences, as this has connected me with a lot of other moms.  Sometimes it is nice to talk to someone who knows what you are going through.  Normally they can tell from ultrasounds if your child has a cleft lip or not, but Colton was rotated the opposite way so his was a total surprise to us!  After he was born, we had to meet with many specialists including a plastic surgeon and dental surgeon.  Colton had to have Nasal Ovular Molding (NAM for you cleft mamas), which was a freaking nightmare, no lie.  The purpose of NAM is to widen and stretch out the skin of the nostril to prepare for surgery.  This involved wearing a mouth piece.  Now, if you think getting a mold taken of your mouth as an adult is uncomfortable….try doing this to a 3 week old.  Not to mention the dental doctor was a real let’s be honest asshole.  It is so important to make sure you find doctors you really like and that you can relate to.


Fast forward to when Colton is 3.5 months old and it’s here…the day I’ve been dreading…the day I’ve been stressing.  Surgery day.  He had his surgery at the Children’s Hospital and his plastic surgeon Dr. Rozzelle was amazing.  Your mind runs wild all of the hours you are sitting there waiting for them to come get you.  Waiting to be able to see your child.  When I first saw him, my heart broke into a million pieces.  His face was bloody and bandaged.  He looked beyond miserable and his arms were tied down. (they have to wear something called no-nos on their arms for 2 weeks after surgery)  The doctor said he did great.  They repaired his lip, re-did his nose and tried to repair the split in his gum.


Now, was healing time.  They kept telling me to nurse him like normal, however it kept splitting his stitches open so we syringe fed him for several days.  It’s times like this when  you know what is best for your child, no one knows what they need more than you.  He had silicone stints in his nose and they needed to stay in for 2 weeks straight!  This is definitely a difficult task with an active little one.  The worst part was having to flush out his nostrils with a long syringe every couple of hours.  He screamed bloody murder every time.  I couldn’t do it, I made my husband.  After 2 weeks the bandages came off and it was such a bittersweet moment.  We had come to love the split in our sons lip or the “cigarette holder” as my husband calls it and that sweet little smile that came along with it.  However, he looked so amazing!  Beyond amazing!  I almost didn’t recognize him, which as a mother is a strange feeling.  I’m not going to lie I totally balled my eyes out.  For 4 months after the surgery, he had to keep the stints taped in his nose.  It got to the point where we just said screw it because he ripped them out of his nose every 5 minutes.  All of his check ups have been great so far.  He still has quite a significant split in his gum, which will require surgery in the future but for now all is well and most people don’t even notice his scar.

I know how scary something like this can be especially if you don’t know anyone who has been through it before.  I thankfully had my mom to talk to, but it has been awesome connecting with other moms on their cleft journey.  I remember one day we were at the mall and some girl was snickering to her boyfriend about Coltons face and his bandages.  I remember being so angry and thinking how dare you talk about a helpless child like that.  Just remember you never know what someone else is going through or how your paths will cross.  Stay strong.  #cleftstrong.  Until next time.




Here are a few items that really helped after Coltons surgery:

Dockatot is where we had Colton sleep at the hospital and at home.  It helped us keep him from rolling over onto his face and it was so easy for us to take anywhere.

LovedBaby is where I got organic cotton side snap onesies.  These were a HUGE help.  This made it so I didn’t have to try to take clothes off over Coltons head.  Life saver for sure.


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