It has been since well before Bailey’s birth that I wrote on the blog, so here is a nice long update.
Bailey Jade Kodra was born November 11, 2013. She came via C-Section at 0704, weighing in at 7lbs 8oz and 18.5in long. She was a beautiful healthy baby girl. The most memorable part of that day for me was laying there on the OR table anxious as I could ever be, waiting for this baby girl to come into our lives. Fearing and being scared of what would come of her Cleft lip and what we were told was cleft palate as well. Within seconds of hearing her cry for the first time, the doctor leaned over the table and said, “It’s just a lip, it’s just a lip”. Tears rolled down my face with the greatest relief in my heart. The pressure and fear of the Cleft was gone. The overwhelming love for my daughter rushed in through my heart and I forgot about the stresses that we had gone through up until that point. That was my baby girl screaming in that room. The most perfect cry I could ever hear was there in that room. Just minutes later, they had her cleaned up, shots given, and all wrapped up. Scott brought her to me and laid her on my chest. Tears continued to roll down my face as this beautiful baby was laying there peacefully wrapped on my chest. She was perfect. Her cleft ended up being what is called a Right Unilateral Incomplete Cleft Lip. Her smile was incredible, and in my eyes I saw nothing wrong with my baby. I could not have asked for a more beautiful little angel to be brought into my life.
With fears of having feeding issues with a Cleft, Bailey took onto her bottle wonderfully. She immediately knew what to do and how to eat. That was such an incredible blessing for us. We had spent countless hours trying to learn how to feed a Cleft baby. The stresses of Little Miss Bailey being able to eat were gone, just like that. Due to the cleft lip, Bailey was not able to create any sort of a seal around the bottle nipple or binkies making that our only struggle for the most part. I have to admit, that for her not to be able to suck on a binky and keep it in her mouth has been hard on me. As I would look around at other “normal” babies who could suck and everything, I would cry… it only hurt me more to realize that my baby was “different”. The next fear with the cleft was Bailey’s hearing. It is very common for Cleft babies to have some hearing issues and extra fluid in the ears. Bailey failed her hearing screen test, countless times while in the hospital. Which can also be normal for newborn babies, but with knowing the fear of clefts causing hearing issues, it only worried me more.
Four days later, we were discharged from the hospital and got to go home. At that point, we were on our own with this beautiful girl. We were so happy and ready to be home. The comfort of being in your own home really makes a difference. Being able to continuously snuggle my little girl was priceless. Her little wide smile continued to touch my heart each and every time I would look at her. A few days after being home, I was able to bring her in to have her hearing retested. She passed with flying colors, and has incredible hearing, another huge relief for us. Her feedings continued well and she continued to grow and grow with no issues at all. We had some rough nights for the first 2 months, waking every 2 hours and taking an hour to get back to sleep, leaving me with on average, 2-3 hours of sleep total a night. Being with my angel always took away the feeling of being completely worn out and exhausted. Her little eyes just have the light of Christ in them and always touch my heart, and then her wide smile on top of that was just perfect, and I forgot about the rest of the world when I would look at her.
As I would start bringing Bailey out to stores and everywhere I went, we would get weird looks all the time, sometimes making me feel as if all of this was my fault, that I caused my daughters Cleft. The looks we were given were as if nobody had ever seen a baby who was different and who had a deformity. I have really been able to see even more how judgmental people are in this world. The looks we give people when we look at them with curiosity and judgment do go noticed. It can be so hurtful at times. I slowly learned that it does not matter what other people thing, and most of the time, it is curiosity more than judgment and that the people giving these looks just need to be taught and informed. Most people have not been around or seen a lot of Cleft babies. To me, my child was normal, most of the time, I had forgotten that my child had a Cleft, and to me, she looked like any other baby in the world. Sometimes it was a hard reminder for me when I received the “looks” from others that my baby was “different”. There were and still are many days that I just cry… I cry in happiness and sadness as well as due to stress.
There have been many times I’ve been told things that sometimes hurt more than not being told anything at all. Things like: Oh, it’s not that bad. Oh it could have been worse. Nobody will ever notice when she gets it fixed. It’s one of the best deformities you could ask for.
Sometimes it is nice to hear from other people, but there are many times, and it may be due to me being a sensitive person, but sometimes comments really hurt and offend me. Sometimes I just want to say back, “you know what? You have not been through this, your child has not had this, you don’t understand”. Yes, it may just be a “simple cleft” but being a mother of a child with a deformity who will be judged the rest of her life and had difficulties and will continue to throughout her life, is hard. I will never understand completely what a Mom of a child with other issues will go through. I appreciate all the support people try to give to us, but sometimes, comments like that don’t help. It’s not as easy as people may thing to go through things like this. Without the support, I would never have come this far through this trial in our life. I can’t help but think how strong my little Bailey is for choosing this trial before she came to this earth. She is one of the strongest angels I have ever seen.
Bailey’s surgery was scheduled for February 26th, 2014 with Primary Children’s Hospital in SLC, UT with the surgeon Dr. David Motoki. As the surgery date was drawing nearer, we became more and more anxious and ready to have this fixed and over with. About halfway through February, I broke down, I realized that my little girl would no longer look like my little girl. The world was going to change her smile… I knew that it was necessary for function, but truly a big portion of this surgery is cosmetic, because she will be judged for her deformity if it is not fixed. There were a few days when I was having strong emotions about this change and almost debating cancelling the surgery multiple times. It took being told over and over that this surgery would help her be able to eat; talk and function like a “normal” baby that helped push me to allow this to happen. I was no longer going to have a little girl with a tiny wide smile. That smile was going to be taken from me. That smile was the one that melted my heart every time I saw it. I didn’t want to lose that. I loved her the way she was. She was perfect. I was willing to continue to deal with the difficulties of the cleft, but knew it had to be done.
Tuesday, February 25th, we received a phone call from Primary Children’s Hospital. They called for Bailey’s surgery time and pre-op instructions. Surgery was scheduled for 0845 and we had to be at the hospital for 0715. Bailey had to fast from 0000 on, but was allowed a little bit of pedialite at 0515 before we headed up to the Hospital. We spent that evening bathing her and relaxing her as well as playing and getting the last few wide smiles from our baby girl before everything would change that next morning. We got Bailey to bed, and of course, at that point, I did not sleep that night due to the lovely anxiety of what was coming. Bright and early we got Bailey up and ready and headed up to Primary’s.
We arrived at Primary’s, got her checked in and all ready. While waiting in front of the OR doors to talk with the surgeon and anesthesiologist before walking her back to the OR, Bailey, having no clue what was coming her way, was smiling at every single person walking past us. I could not help but cry seeing how happy my little girl was. She was doing wonderful considering she was starving, she was so patient. Next thing I know, I’m walking my baby back to the OR doors and handed her off to the anesthesiologist, and that was the last wide smile I will ever see on that precious angel’s face. Something I will never forget and will continue to be a memory in my eyes forever. I walked away crying… nervous for my daughter to get put under and as close to death as possible without killing her, as well as sad that my Bailey’s smile would be changed forever.
We went to the waiting room and tried to stay distracted for what seemed like hours and hours. About 1.5 hours into surgery, I received an update from the OR nurse saying things were going well and that she would be done within a half hour. One hour after that, still no word, and no Bailey… I tried to be as patient as could be. Finally, the surgeon came out and came to tell us about the surgery. Surgery went wonderful, he was able to get her lip and muscle completely pulled back together in the correct form, as well as repair her nose a little bit. The surgeon went on to explain how Bailey had a major asthma attack when they were putting her under, causing some excitement and fear that she would not be able to make it through surgery if they continued. The anesthesiologist was able to get everything under control enough to continue with surgery.
We had no clue whatsoever that Bailey had any sort of asthma issues, but now we are having to keep a close eye on her for issues, especially due to a family history on my side of the family of asthma. I have to admit how grateful I am for the wonderful people at Primary Children’s Hospital for being able to do what they could to keep my baby girl alive and help her get through that struggle of not wanting to breathe. I trusted them with little Bailey, and they took incredible care of her. I would trust them with her life anytime.
We were told at that point that our stay at Primary’s would possibly be a lot longer due to the breathing issues, but Bailey did incredible. She was on oxygen for quite a bit of time, a lot longer than most kiddos. But we were able to wean her off throughout the night. She ate well right after surgery and started picking up eating very quickly again. She struggled with pain and we had to really stay on top of medication, but really, she did incredible.
She came out of surgery with a bar across the top of her lip, called a Logan’s Bow. That is to protect her lip from getting hit or bumped as well as pull the upper lip together to keep tension off of the cleft incision and all the stitches. She also had on some arm restraints to keep her arms completely straight so that she could not touch her lip at all or put anything in her mouth. She had to keep all of those on for 2 weeks after surgery. The arm restraints were a little bit frustrating to her due to the fact that she loves her hand by and in her face (as seen in all the ultrasounds at the beginning of our blog!!). Considering the situation, I am so proud of my little girl. She did an incredible job with everything.
We were discharged from Primary’s Thursday February 27th. We had a rough couple of weeks post-op with pain control, sleeping and keeping those arm restraints on and from frustrating Bailey. It has been hard to go 2 weeks with little to no sleep, but I would do anything for her. There were nights my Mom and I had to stay up taking turns holding her all night because that was the only way to get Bailey to stay asleep. Poor little girl had it rough, but now it’s all over.
As I took her out in public with her arm restraints and Logan’s bow, we got so many weird looks and people asked a lot of questions. I took none of the looks and questions offensive and turned it all into teaching moments for me. I was able to teach a lot about Cleft’s these past couple weeks, and for me, that means a lot for me to be able to share about Cleft awareness. We have been asked if the Logan’s Bow was to correct her jaw, if she had broken arms, if she fell and cracked her face open, “what is wrong with her”, and sometimes simply just “why?”. I was able to teach many people about Clefts and how they are repaired and the equipment used after. Once people knew what was “wrong”, they understood so much more and started smiling at Bailey and feeling more comfortable around us. Bailey would immediately smile back, and make everybody’s day… that’s my girl!
We are now at the 2 week mark post-op and Bailey is healing well. Her scar is so minimal and the surgeon really did an incredible job making her lip look perfect. He lined everything up just so and we are grateful for the time he took to repair her lip as good as he could. We greatly appreciate him and what he has done for our daughter.
I have “gotten over” the fact that we had to change my daughters smile. She looks so different. She does not look like the same baby anymore. It takes me looking into her eyes to remember that she is still the same person sometimes. I cry when I see pictures of her with her little Wide smile, I miss it. I never thought I would ever say that I would miss a deformity. I fell in love with who my daughter was, and would not trade what she looked like for anything. That wide smile was my girl. Now, she is my girl, with a fixed wide smile. Her smile still melts my heart and is the most wonderful thing I get to see each and every day.
I dread the day that we have to continue to remind her that she is just as normal as everybody else, and that she is not different. She was blessed with 2 smiles instead of one. Not many are blessed with that. Her smile wide or fixed touches everybody’s heart. When she smiles, you can look into those eyes and see a part of Heaven here down on the earth. Bailey was perfect and is still perfect. That will never change. No matter how much the world changes my Bailey’s smile, she is still the same spirit she came down to this earth as. The most incredible and strongest girl I could be blessed with.
On the other hand, I look forward to being able to continue to teach others about Cleft’s and help spread awareness. I look forward to sharing this story from day one of finding out about Bailey’s cleft up until now with her as she grows and is able to understand and wonder why her baby pictures look different and why she has a scar where others don’t. It will be hard to help her at times when she is being looked at and judged by others, but we are Family, cleft strong, and we stick together through everything.
I cannot express my gratitude enough for how grateful I am for all of the help and support we have received through this trial and are continuing to receive. We have gone through many different kinds of bottles and binky’s and everything we can think of to help get Bailey this far. I would not have been able to afford all this if it wasn’t for the help of my Mom and my Grampa. My family and friends have helped us come so far and have helped make this trial so much lighter.
These hard times are not completely over, and will continue to be a struggle at times. But with the help I’ve received this far, I know I will have enough to help us make it through whatever may come our way. I have made some incredible friends with others who have Clefts as well as many other cleft mommies. Without those friendships, I would not have been able to make it through everything as smoothly. They have been able to answer so many questions as well as give us so much support. I feel like due to Bailey’s Cleft, I have made a few thousand more friends, which is such a wonderful blessing.
I hope that due to our experiences, we can make a difference and help teach and inform the world about Cleft awareness.
We are family, cleft strong cleft proud, sticking together through it all.
Bailey isn’t letting the world change her smile; her smile is changing the world.
