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Cleft-Craniofacial Community Stories

Made it Through the First Year!

Check out the beginning of Ella’s story here.

We’ve made it through the first year! I remember reaching out to parents after Ella was born, and they would all say the same thing: “Just get through the first year and you’ll be fine!” They were right. Ella had her lip and nose revision, tubes placed in her ears, and the skin under her tongue clipped with her first surgery at six months. It was a very emotional time because the face that we fell in love with was going to have a different smile. The second surgery was to close her hard and soft palate. It was difficult for us because we knew how hard it was to place Ella in the arms of doctors and nurses who we put all of our trust and heart into. We also knew the recovery would be difficult. It was and still is. It has now been two weeks since the operation, and Ella is doing great!

Ella is a fighter. I’d even say she’s stubborn, but I can say that because I’m her mom! Around seven months of age we tried baby food and she wouldn’t even give it a second try. She was having none of it. I don’t blame her! We stuck with her bottle and formula, but the girl was so hungry. Around ten months Ella was standing at the baby gate looking into the kitchen pitching one of her fits (I like to say she has a strong personality, but again, I’m her mom). She had a complete cleft of the hard and soft palate, and I thought there was no way I would be able to feed her “big people food.” I was wrong! I also thought to myself, “What’s the worst thing that could happen? It could come out her nose.” I cut up some pancakes and she took them. Pancakes led to fruits, macaroni and cheese, sandwiches, pizza, and burgers. You name it, she ate it! The only things that I ever had come out her nose were ice cream, chocolate, and a chewed up hot dog that her two year old sister thought she would share for lunch. Yuck!

With palate revision we had to take her off her bottle beforehand which was harder on me than her. She’s the last of my four girls, and I miss it. We also had to take away her angel bear that her Aunt Linda gave to her because she sucked the wing of it. That also meant taking away the food that she was so good at eating. Three to four weeks after her procedure she was placed on a blenderized diet that she drank out of a cup. After surgery her doctor didn’t want anything placed in her mouth so that she wouldn’t injure the fabulous work they did. Heartbreaking as it is to give up the bottle, food, and bear it’s all worth it in the end.

Another part of surgery are those OOoh so wonderful arm restraints! Talk to any parent of a child who has to wear them and they will have a story or two for you. They wear arm restraints from their little arm pits down to their wrists so they don’t damage the surgery site in any way while it’s healing. This is her second time wearing them so we knew what was coming. They are a soft fabric that Velcro’s around the arm with a little metal bar that goes behind their elbows so they can’t bend them. Even though they look like medieval torture devices, they aren’t! They adapt so well. They don’t hurt them in any way – frustrate them, YES!, hurt them, no. The one thing that does surprise me is how fast they learn to get out of them. So many mothers told me they wiggle out of them, and I thought they were crazy. Looking at them you would think they wouldn’t be able to, but they learn. They perfect their escaping act to a tee!

The procedure itself is amazing. I look in Ella’s mouth and can’t believe how gifted her doctor and team are. What incredible people! They were so understanding and patient with us, which we’re so thankful for. Recovery is hard but the time is going by so fast and each day gets better. Two weeks out of surgery, Ella will still only eat three things: beef stew, chicken noodle soup (of course run through the blender) and chocolate ice cream. I’m just happy that she has a full belly! She can actually pucker and make sucking noises. Her cry has changed, along with her voice, but her personality is as strong as ever. Most of the pictures I share of Ella, her tongue is sticking out. Since her first surgery when they clipped her tongue, and now that she has a closed palate, she loves to explore her new mouth. Those are the pictures that I love to share because that’s our Ella!

When parents say, “What a year can do!” they are so right. The emotions are so up and down. They can melt your heart in a way no one else can, but break it just as easily. If you would have asked me a year ago if I thought we’d ever be to this point, I would have said, “No.” But here we are! Now one year and two surgeries later, Ella has an amazing smile, a strong personality, and a soul that completes mine. Thank you so much to our wonderful doctor, Dr. Canady at the University of Iowa Hospital, who is so patient, caring, gifted, and blessed. His hands and talent have touched Ella and our family in a way he’ll never know. He’s given our daughter a smile that warms my heart everyday. I hope he truly understands how much we all appreciate the work he does. To Deb, our cleft clinic nurse who
takes the time to explain everything, answer any questions, emails, or phone calls. We’re so lucky to have her in our corner! Thank you to our residents who took the time at crazy hours of the night to answer our questions and make sure we were comfortable. To our post-op nurse, Robin, who made all the difference in the world with Ella’s recovery, and to Ella’s amazing cleft team. Also to my sister, who has been there during all the difficult times we’ve had over the last two weeks. You’ll never know how good a clean outfit, a full belly, and a shower felt. Stasia, you’re the best sister and aunt anyone could have! Thank you to my husband who’s gotten me through the first year and who’s been my rock. Thank you to my family who has been there from the very beginning of our journey. To the parents of the children going through situations like ours, you’ve been an incredible help. Lastly, thank you to the mother at the first cleft clinic we went to, who stopped me and said, “Mom, it will be O.K.” She’s was right – everything’s ok!

Last Updated: Aug 31, 2007