Jylian Shay Bilbow
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Jylian is 9 months old. She has had her trach since she was about 3 weeks old. She is a blessing from God, and we want to share her story so that it may help other families in similar situations. Here is her story......
My name is Jylian Shay Bilbow, and this is my story! I was born on March 17, 2002 at Arlington Memorial Hospital in Arlington, TX. My mom had a wonderful pregnancy, and my parents were excited about bringing me home a day or two after I was born. God had other plans for my life, though. Little did we know, I would have to endure a lot in my first months.
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March 17, 2002 - I was born and immediately intubated (a tube was put down my throat to help me breathe), because my jaw was recessed and blocking my airway. Although the doctors weren't sure of anything at the time, we later learned that I also had craniosynostosis, which meant the bones in my skull had fused prematurely. The doctors thought I might have a craniofacial syndrome, but they didn't know why it happened, or which syndrome it could be. They did know that I would have to be transferred to Cook Children's Hospital in Fort Worth in order to get a tracheostomy. They would have to put a small hole in my throat, through my trachea, so I could breathe. My parents were so scared, but they knew that I was in the best hands.
March 25, 2002 - I was scheduled to get my trach today, but again, God had other plans for me! Just before my tracheostomy was supposed to be done, my surgeon, Dr. Vaughan, found a problem with my tummy. He had to do exploratory abdominal surgery, and he found a small tear in my intestine. He had to do a colostomy, which would fortunately be closed in 6 weeks. It meant a longer hospital stay, and the tracheostomy had to be put off until I had healed. The tear in my intestine must have happened some time between birth and being transferred to Cooks, but the doctors were not sure. I was so little, and my mom was sad because she still hadn’t held me. I was eating through a tube in my nose that lead to my tummy. My mom was able to pump some breast milk for me, and I was gradually getting stronger. The NICU was a scary place for my family. It was so hard for my parents to leave at night, so they stayed with me as much as possible.
April 11, 2002 - I finally had my tracheostomy! Now my parents could hold me!! After I had my new trach for a week, I was moved from the NICU to the Transitional Care Unit. Here, my parents would learn how to change my trach, care for my trach, and other things like infant CPR. My Mimi learned how to change my trach too, so she can baby-sit! My parents lived at Cooks with me for a little over a month. It was hard, but I was so glad they were there. Life in the hospital is tough, especially for a new one.
May 13, 2002 - Dr. Vaughan does surgery again. He closed my colostomy, and gave me a G-button. The G-button is what I eat through. It’s a small button in my tummy, and a tube attaches when it’s time to eat. This is how I get my formula today. I met a lot of therapists in the hospital, and they helped my parents know what to do when we got home.
May 20, 2002 - I am discharged from the hospital! I take my first car ride, and I love my new nursery! I have to sleep in mom and dad’s room though, because they have to watch me closely. I have a cardiac monitor that I wear while we are all sleeping. A few days after my release, I take a trip to Medical City of Dallas to meet Dr. Kenneth Salyer. Dr. Salyer is known around the world for his innovation in craniofacial surgery. I would need two different operations to reconstruct my skull and correct the craniosynostosis. I would also need a new lower jaw. Dr. Salyer was so nice, and he assured my parents that everything would be OK.
Summer 2002 - This summer was full of Dr. appointments and physical and speech therapy. My first skull surgery is set for September 13. I have been getting really chubby cheeks!! I started smiling more and more, and even laughed, although you can’t hear me because of the trach.
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September 13, 2002 - I had my first skull surgery done at Medical City. Dr. Salyer and Dr. Shapiro (my neurosurgeon from Children's Medical Center of Dallas) worked together, and it took about 6 hours. I was in the hospital for about 7 days, most of which were spent in the PICU. After I got home, I recovered very quickly.
I am now awaiting my second skull surgery. Dr. Salyer will reconstruct the front of my skull this time. It is scheduled for January 2, 2003. I have wonderful speech and physical therapists from Cooks Home Health. They come twice a week. I will also be fitted for a DOC Band, which is a headband that I will wear 23 hours a day in order to shape my skull. Pretty soon I will have a round head!! I am looking forward to the year to come. I can't wait to have my jaw surgery done, so I can get my trach out!! My family can't wait to hear me babble, and my dad can't wait to take me swimming!
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January 27, 2003 - The second skull surgery was done today! I was at Medical City for 6 days. I have lots of swelling, but I look great. This week was really hard on my parents, but once again, God is carrying us through.
March, 2003 - This month, I finally got my DOC band. My parents were so excited, because it would help shape my skull and keep me from being flat on the back of my head. After about 2 weeks of trying, we realized it just wasn't in God's plan right now. The DOC band was great for shaping, but since I am not sitting on my own yet, the DOC band was breaking down my skin. I couldn't safely continue to wear it. It was disappointing, but maybe I will be able to wear one in the future when I am stronger. Now I am awaiting jaw advancement surgery. This will be awesome, because it will help me breathe. I may be able to get my trach out in the months to come!!!
April 1, 2003 - Jaw surgery was a success! I now have my jaw distraction devices on, and I will have them for three months. My parents are going to learn how to turn them everyday, which will help advance my jaw. This was the surgery that we have been waiting for since the day after I was born. We needed Dr. Salyer to do this operation in order to one day be tracheostomy free!! Dr. Stager also corrected my eye muscle imbalance at the same time. I was at Medical City for about 4 days, and I am getting used to the devices at home now.
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August 1, 2003 - We have been so busy this summer. The Ft. Worth Cats did an auction this season to raise money for the Craniofacial Foundation. Jylian still has her jaw devices, and they will most likely stay in until late September. Even though it has been challenging, she is gaining strength and learning so much. We had a CT scan done with Dr. Shapiro, and everything was wonderful. He says he doesn't see any need for frequent scans. Praise the Lord; this is wonderful news. Jylian is starting to gain head control, and we work at it everyday. She is also playing games and learning how to make sounds over her trach. She has an awesome personality. Please pray for strength!
January, 2004 - Jylian is almost two, and we are so amazed by her development! She is signing, and she is almost sitting on her own. We are awaiting skull reconstruction surgery again, and we will update with the date as soon as it's set.
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April, 2004 - Jylian is recovering from her third cranial vault (skull surgery) which took place on March 30. She is home, and she is doing so well. We are so thankful for the prayers and support of friends and family. Jylian has an evaluation of her airway set for May 18th. It is possible that we could come home from Medical City in May trach free! Please keep her in your prayers.
June, 2004 - Jylian wasn't able to get her trach out in May. We are one step closer, but still not there yet. Dr. Trone was very positive about her progress, but it will take a little longer than we thought. She will have a sleep study done this month to monitor her as she breathes at night. Please pray for us this summer. We have lots of appointments, and we need all the strength (emotional and physical) that God can give us! He has been faithful, and Jylian is becoming such a smart, sweet little lady!
July 31, 2004 - Well, it finally happened! Jylian Shay is trach free. Dr. Trone observed her overnight at Medical City, and the next morning she was decannulated! We are so excited. God is so good. Jylian continues to gain strength, and she we are so very proud of her. It's great to be trach-free!
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- Visit Jylian's web sit at: www.jylian.com
