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1 in 600- Our Journey as a Cleft Family.

Updated: Jun 4, 2023

As an expectant mother- there is something so magical and grounding when you get to see that tiny human growing in your belly. The anticipation and excitement (and even nervousness) surrounding that first anatomy scan around your halfway mark is sky high.

Who will this tiny being grow into? Will they look like me or their daddy? What will their personality be like?

pregnant with my cleft warrior princess

Picture of me SUPER pregnant with Ava- getting settled into a new apartment with Charlie and waiting for the army to let Matt go on terminal leave.

A week after our anatomy scan- we got a call from our OB.

I will never forget that day. Matt was still on post for the day, Charlie was napping (thank goodness), and I was just resting and enjoying some quiet time. My phone rang and it was the army midwife. She told me that there were some things that the sonographer caught that indicated a cleft lip and maybe palate involvement.

My. World. Stopped. I had so many questions whirling in my head. How would I breastfeed her? How is this going to impact her? What kind of surgeries? Where can I find the answers I needed? We eventually got referred off post for more scans that confirmed that Ava had a unilateral cleft lip with probable palate involvement and would indeed need reconstructive surgery within the first 6 months.

Fast forward 20 weeks...

With Matt finally home, my mom in town, and the Christmas tree up and decorated- it was time.

Hugely pregnant, I passed my "due date" and was able to enjoy Thanksgiving with family, instead of in the hospital. I was scheduled for induction two days later, so I became obsessed with helping my body go into labor naturally. We walked till the 'squitoes ate us, and when all else failed to get things going, mom prayed. As she said "Amen!" I heard a pop! and when I stood up, a deluge of amniotic fluid covered the living room rug. Off we headed to the hospital! After 7 hours of labor, Ava was welcomed earthside by mama and daddy, grandma, and the nurse that caught her!

fresh-born and so sweet!

An incomplete unilateral cleft lip and palate- and Downtown Houston on the weekly.

Warrior Princess Ava captivated me the moment she was laid on my chest. I knew in that moment that she was perfect, and I loved her fiercely. I knew that even though we had doctor visits and cleft treatments and surgeries to get through, this little human was the most amazing girl I had ever met. Truly love at first sight.

Less than two weeks after she was born, Ava met with her cleft team at Texas Children's Hospital in downtown Houston. Plastic surgeon, orthodontist, speech therapist, ENT- the whole team came in one by one to assess and help create a treatment plan for Ava. Then a couple of weeks later she got fitted for her NAM (nasal alveolar molding device) that she would wear as close to 24/7 as possible for at least the next four months. We drove from Conroe to The Medical Center every week for four months. She had her NAM adjusted each week, bringing her gums closer and closer in preparation for surgery. There were weeks that my heart broke for her- the tape would chap and pull her little cheeks raw. She eventually preferred to eat with the NAM because it created a palate for her to have more suction, etc.

Left: just hours old. Middle: so over the raw cheeks. Right: minutes before she heads into surgery.

Handing my four-month-old to a complete stranger was one of the hardest moments as a mama.

After four months of the NAM therapy, Ava was ready for lip repair! We got to TCH early that morning and went through all the pre-surgery paperwork, checks, rechecks, etc. Finally, it was time for her to go back. Words cannot describe the agony I felt having to hand my tiny daughter to a stranger, knowing I wouldn't be there in that cold, bright O.R. theater to warm her up or comfort her. I knew it was necessary, but a mama's heart still feels all the feels.

What felt like a lifetime (it was 3-4 hours) finally passed as we waited in the cafeteria with PawPaw and Gi (my dad and Matt's mom) for updates. Finally, the staff member assigned to us came to tell us Ava was out of OR and in the recovery area, slowly waking up from the anesthesia. We were taken back to see her, and as hard as I had tried to prepare myself, I was taken aback at first. My perfect little warrior princess looked so different! Absolutely perfect still, but my mama heart had the tiniest moment of sadness that her beautiful little cleft lips were gone. You may think I'm crazy, and that's ok. But as a cleft mom- you have spent months getting to know those original lips, that original smile, and you love that first set fiercely.

L to R: groggy but sweet and cuddly. Healing beautifully! Heading into palate repair.

Fast forward seven months to Palate Repair.

We had seven months of recovery and preparation for Ava's next surgery- palate repair. We were definitely looking forward to no more spaghetti coming out of her nose! The day came, and once again I handed my little girl over to a complete stranger to undergo yet another reconstructive surgery. It did not get easier. But this girl came through with flying colors, and after spending another night in recovery, we got to go home. She healed perfectly, and we got the green light to only continue annual check-ins for a few years. YAY! Ava still has at least one more surgery to go (bone graft for her gum notch plus orthodontics for the cleft teeth), but she has healed beautifully, and most people have a hard time believing she ever had reconstructive surgery!

L to R: look at those lips! I love having a girly girl that loves playing with makeup!

July is Cleft and Craniofacial Awareness Month!

We decided to craft a candle and wax melt to support our cleft community, with 25% of the profits donated to SmileTrain! Read more about their mission here.

About the candle: we are releasing a beautiful magenta-colored, watermelon bubblegum scented candle, with just a pinch of shimmer as it melts. Of course, it's made using all the clean ingredients Crunchy Mama Candles is known for! The bright pink color is for Cleft Awareness, and the scent reminds me of the first time I saw my cleft princess. A magical moment between mama and baby, where nothing but love exists, and all is well in the world. This scent never fails to bring a smile to my face, so I thought it would be perfect to help raise awareness for the cleft community!

Want to get in on the action? Purchase your candle below, and then follow our social media to see us make our first donation to SmileTrain!

cleft awareness candle and wax melt
Original Smile Candle and Wax Melt

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