Saturday, October 10, 2015

A journey of a beautiful smile

I didn't plan on writing a post tonight, but I guess I am writing out of anger and disappointment. It was brought to my attention, through a Facebook support group for cleft moms, that there is some trashy T.V. show called Survivor's Remorse on Starz making fun of children who were born with cleft lip and palate. I honestly thought when I first read it, that it couldn't possibly be. I mean who makes fun of people with birth defects? Are there really people who would write a script for a television show that would make fun of children with a cleft or any children for that matter? I researched further into it until I found the clip. Let me tell you that this wasn't just a joke. This wasn't just a laugh at the expense of these kids. This was an absolute horror to watch. They talked about how these kids were born with (I'm keeping it clean here) "effed" up mouths and they had snaggle teeth. I was so furious and livid that I wanted to contact anyone and everyone who would listen. They were striking a nerve with me because this hits very close to home. My oldest daughter was born with unilateral cleft lip and palate. I'm a mama bear when it comes to my kids so to me they were taking a direct hit at my daughter.

I was 19 years old, a first time mom, and had no clue that my child had anything physically wrong with her. It was a tough pregnancy with a lot of sickness. I had also tried to go into labor with her on numerous times extremely early in my pregnancy. It was not fun. I gained a whopping 16 pounds during that pregnancy. I was so sick, but I knew at the end of the road I would have a beautiful baby girl to hold in my arms. I was on a pill to keep me from going in labor until 37 weeks. At 38 weeks she was ready to come into the world. I had a very long 22 hour labor. She ended up being an emergency c-section due to the fact I wouldn't dilate past 5 cm. It was really par for the course with this pregnancy since there was nothing normal about it. The c-section started out as any other normal one would I suppose. My doctor who I absolutely adored, was singing to his music on the radio as he operated. When I tell him that I hope I'm numb and don't feel anything, he reassures me that I would have since he was already to my uterus. Ha! Another minute or so passed, it seemed like forever, they said we almost have her! All of a sudden, I heard my doctor and the doctor assisting and some of the nurses gasp. I immediately knew something was wrong. I said "WHAT WHAT IS IT??" My doctor leaned over and asked if I had ever heard of cleft lip and palate.  Have I ever heard of it?? Uh yes I have in the Anatomy and Physiology or Health classes I had taken in high school. The pictures they showed were so sad. The clefts were extreme. They took her out, and she wasn't crying. As they worked on my newborn baby, they assured me that she was still beautiful. My doctor and the pediatrician that were in there were amazing. They kept telling me how beautiful and perfect she was. They told me that I could see her for a brief second before they whisked her off to the NICU.  I was scared to look at her. What kind of mother is scared to look at their child?? All I kept thinking is what did I do wrong? How could I have prevented this? As the nurse walked over with her, I could feel the mix of emotions running through me, and then I saw her. What beauty. Until that point, I had never seen something or someone so beautiful in my life. She was a bundle of love with black hair and dark blue eyes. Oh right. She had a cleft. I didn't even see it anymore. She was perfect. Absolutely perfect. They took her away to the NICU while I laid crying on the table that I couldn't hold my baby. I started to go into shock so they decided that it would be best to put me to sleep, so I could rest. Before they did, the pediatrician leaned over me and said, "That little girl is BEAUTIFUL, she is going to be a fox!!" Even though I was scared out of my mind, I also felt a sense of peace fall over me.

Over the next few days, we had so much information thrown at us that it was overwhelming. She had to be fed with a different kind of bottle. We went through so many trials of bottles trying to find a fit for her. Unfortunately breast feeding was out, so I had to pump.  We ended up with the Haberman feeder. It worked best for her.
She had to be held up so that it didn't come out through the hole in the roof of her mouth and out of her nose. She also had a VSD, or hole in her heart. When they told me that I remember just falling into a chair and crying saying that I can't handle anymore! She was in the NICU for 9 days. I had to leave the hospital without my baby. The fact that I had a c-section didn't stop me one bit from staying away from her.  My doctor even ran into me in the hall and got on to me because I was there and not resting. He said at least put your feet up. I never wanted to leave her in the NICU alone. The nurses were wonderful and even though it was against the rules, they let me stay with her all the time except for shift change.  My doctor actually called a patient and asked her to bring her son up to the hospital, who was also born with CL&P, to visit me so that I could see what he looked like after surgeries. It was such a blessing to me at the time. The time finally came and she got to come home with us!! I was so excited!! We got home and she screamed for 23 hours out of 24 in a day... and that 1 hour was broken up over the entire day and night. We learned soon after that she had severe reflux. She was on adult dosages of acid medicine to try and regulate that. I slept in a recliner with her for 9 solid months because it was the only way she could sleep. I am very grateful for my mom who helped me care for her when she wasn't working. It was a very trying time, and I can tell you that it made this 19 year old girl turn into a grown woman over night. I didn't have a choice. I was caring for not only another human who relied on me, but I was taking care of a sick baby that didn't know why she felt so bad.

Sometimes we got a sweet smile through the tears.

We were referred to Texas Children's Hospital shortly after she was born and we made our first appointment when she was just a few weeks old. We ended up with a fantastic craniofacial team that absolutely adored Baylie! They set her surgery for when she was 2 months old. I couldn't wrap my brain around it. They were going to put my tiny little baby to sleep and do her first palate surgery and temporarily pull her lip together. The night before her surgery I was a nervous wreck. She couldn't take a bottle after midnight. Do you know what it's like to withhold food from your screaming 2 month old who doesn't understand WHY you won't feed her. It was awful. I felt helpless and just cried right along with her. We got to the hospital and went through the normal procedures of admitting her etc.  They changed her into a gown, and then from there we waited on the doctors. I can remember the moment they all walked in. I lost it. I begged them to please please take care of my baby, and they assured me they would. I handed her off and said a prayer. It is an awful feeling. Her dad had to pretty much drag me off at that point. It seemed like forever. Finally they came and talked to us after a couple of hours and said she did great. They said that she had arm splints on to keep her from grabbing her face. Here's a picture that was taken shortly after her surgery.

This was the most intense of all the surgeries that she's had so far. Since they worked on the roof of her mouth which consisted of cutting a flap from the good side and basically folding it over to the other, her mouth was raw. Not long after she was in a room, her mouth started bleeding profusely. It totally upset me. It was so much blood. They told me it was normal and they suctioned her and it finally stopped. It happened a few more times, but thankfully not as bad. This hospital stay consisted of almost 2 weeks. I don't remember much of it because I don't think I slept while I was there. She was finally ready to come home and finish her recovery. They scheduled her next surgery for 6 months old, and that was to finish repairing her lip. This surgery wasn't near as bad as the first one. Not fun, but not as hard on her. As excited as I was for this surgery, part of me was sad. I didn't want to lose her perfect smile. After this surgery her lip would be permanently attached and it would for sure change the way she looked. I loved her just the way she was, but of course I knew it had to be done.

You see, having a cleft lip and palate isn't just a harelip as some refer it to. Please don't use the word harelip either. It's offensive. It's not just some cosmetic surgery. It affects how they eat, how they speak, their ears, their sinuses, their teeth etc. On top of the cleft surgeries, Baylie had 3 sets of tubes. Her little ears were infected so many times that she even had an eardrum bust. Baylie had to have braces for 6 years which caused problems with her teeth. She was also born missing teeth. They just never formed. These are just some of the things that they have to endure. She started speech therapy when she was 2 months old!! As she got older they couldn't believe her speech was so good. I credit the speech pathologists that worked with her from the beginning. They did an incredible job with her! Even after all the surgeries she's had, she's not done yet. She still has to have a bone graph and her jaw broken and reset. Let's not even talk about the bullying that she went through. The name calling or the question, "What's wrong with your face?" People can be so cruel. It's not just children either. I had adults...grown adults make faces at her when she was a baby as if she was a monster. I had people accuse me of doing drugs and that it was my fault.

This journey with Baylie has taught me a lot. She taught me how to be a mother. She taught me patience. She taught me a love that I could have never imagined. Baylie is now almost 20 (this month yay) and has a beautiful daughter of her own. My grandbaby was born with NO cleft lip or palate! I am thankful for that! I am writing this post hopefully to encourage someone who may be pregnant with a cleftie, or maybe you have a new baby that was born with a cleft. It isn't an easy road, but you can do it. Just be strong for your babies. Be their voice when they need you to be. Remember, you did NOTHING wrong! I pray that each and everyone that has to endure this or any disability or birth defect that God wraps his arms around you and guides you through it. Remember we are #cleftstrong.


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