Hello there cleft families! My name is Azaelya and I’m a proud cleft mom. I’m 23 years old and at 22 I had my first son, Jaxson. My pregnancy was a surprise but a happy one!
I found out I was pregnant at 8 weeks and at 12 weeks I had my first scan where nurses and I first noticed a difference on ultrasound. At that time Doctors recommended I have a CVS exam done (cells taken directly from the placenta) in attempts to get a closer look at what might be wrong. After very negative experience with the beginning half of the CVS I decided to back out of the procedure. At this point the Doctor suggested termination. I left the office that day very upset, uninformed and confused about what I was supposed to do. I went back to my Obstetrician and requested to see a different Doctor and have a separate ultrasound done as a second opinion.
At the second office I went to, I had a completely different experience! My pregnancy had progressed by a few weeks and Doctors reassured me that although my son did have a cleft and possibly a cleft palate, that diagnosis was rarely life-threatening. My pregnancy care was much like many other women! At around 27 weeks I was admitted to the hospital for preeclampsia. Three weeks later I gave birth to my son ,9 weeks early via emergency C-section. I will add that just because your child is diagnosed with cleft lip and palate that does not mean that you will have preeclampsia or that your child will be born prematurely. This was just for us and every pregnancy is very different.
My son Jaxson is almost a year old now! Although he was born nine weeks early and weighed only 2 pounds, he’s now thriving and weighs more than 20 pounds! Looking back I cannot believe how nervous I was to see my son for the first time because truly, his face is just adorable.
My boy had a bilateral cleft lip and palate so his smile was nice and wide! Due to the severity of his cleft he was not able to bottle feed or breast feed which, you may find is pretty common with cleft babies. For the first 3 months we tried NG tube feeding, then Jax got too smart for that. He was pulling it out multiple times daily and that’s when we knew we needed to try something else. At 3 months old Jaxson had his G-tube surgery and he has been using that for his nutrition ever since! A G-tube/peg tube is another thing not all cleft families need to use but just in our case you do.....it has worked wonders for us!!
In June 2019, Jaxson got his forever smile! He had his lip repaired and within a few days of his surgery we were back home. I still remember the feeling in my gut knowing that I would never see that little cleft smile in person again. That broke my heart. If you have not come close enough to your child’s cleft lip surgery or if you haven’t had it done yet, then you might not know this feeling, but it’s coming! However there’s another feeling coming too, it’s the feeling of joy and excitement and surprise when you see your little one’s new lip for the first time!
Since having his lip repaired we’ve been enjoying life just a little more. Jaxson can go outside, even when it’s windy! He’s grown teeth and loves to chew on everything! And he yells and makes so many new noises that we’ve never heard him make before.
Our next hurdle will be palate surgery! And we are looking forward to all the life changes that will come along with it! Jaxson will start learning to eat (with the help of his speech therapist) and eventually get rid of his g-tube! He will surely start to make even more noises and sounds too! We pray that Palate surgery will be the last surgery for a few years as well.
As we get ready for his palate surgery in early November we are remembering the progress we have made! We are holding our son extra close and taking pictures every day! We are using Instagram and the Cleft community for comfort and reassurance! I hope that other parents going through their own cleft journey or preparing to begin one will do the same. I hope that we will all live in the moment and treasure the good times. When you need to cry, cry. When you feel like you can laugh or smile, laugh and smile!! It’s okay to find joy in life’s tricky moments. Lastly, love your story and be proud and confident in your little one! I’ve learned that explaining my son’s condition can be exhausting when I focus too much on making it sound informational, yet when I explain how special, unique and interesting our journey has been, I feel uplifted!
Keep strong cleft moms and babies!! This time passes quickly! 😊❤️
See Azaelya's Instagram journey and account here!