Devina Kurshae Bailey
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March 2000: This is Devina Kurshae Bailey. She was born at 24 weeks gestation weighing at 582 grams (1lb. 4.50 oz.) and 12" in length on December 03, 1997. Devina spent five months in a neonatal intensive care unit and went through typically everything that preemie babies go through. By the time Devina was a little over a month old, she had surgery (PDA
Ligation) on January 22, 1998 on her heart to close a valve that was causing a murmur. Surgery was a success.
On February 2, 1998, the resident on duty told me that my child had grade IV hemorrhaging on both sides of her brain. She said that my baby would be mentally retarded. I cried. All that day I was troubled. That night I said a prayer to the Lord stating to Him that I was not claiming retardation for
Devina. Everyday after that, Devina's lungs seemed to be getting stronger and stronger.
By the end of February, she was on the respirator breathing room air. Then after numerous attempts to extubate her, it was determined Devina had a great amount of scarring caused to her upper airway and vocal cords. She was diagnosed with Subglottic Stenosis. So the Neonatologists wanted to try a Chricoid Split in attempt to keep her from having to have a tracheostomy done. Well, on March 11, 1998, the surgical procedure was done.
After two weeks of recovery, Devina was extubated and doing surprisingly well for about 30 minutes. She started getting aggravated and begin to cry. What was a cry for most parents was like a muted expression of a cry to me. Shortly after, Devina started retracting and had to be placed on a
CPAP. That worked for a few hours until she started retracting so severely and the doctors had to order for her to be intubated again. My heart was melting. I sat there and watched my daughter fight for her life for five months. After that particular episode, I was ready to make a conference with the doctor to insist that a tracheotomy be done. I know that most parents would probably ask, "What? A
tracheostomy? Are you kidding me?" I was asking for one! After I saw what my daughter had to go through just to try to breath freely, the trach was like a plus to me. I was determined to do and learn everything (as I've always been) that was necessary for me to get my daughter home in a safe and supportive environment that would be willing to be educated about trach care. Well, when I was getting ready to make the conference with the doctor, she had already sent word by the RN to see me. I spoke with her and she had the same idea about the trach. She informed me that usually, they try everything possible before sending a baby home with a trach because many families are not equipped or knowledgeable enough to care for a baby with a trach, but she was assured that I was not a person with such characteristics.
On April 15, 1998, Devina had the tracheostomy done. Exactly three weeks later on May 6, 1998, she was discharged and sent home. Devina was doing wonderful with her trach. We (my parents and I) took all of the necessary precautions. I admit that I am a parent that is very protective of my daughter and her trach. My mother and 17-year-old sister learned how to suction and take care of Devina's trach. They were a lot of help. We knew that Devina was diagnosed with a chronic lung disease and so we did everything possible to help her illness. It wasn't until December 3, 1998, her first birthday, that Devina started showing affects of having this lung disease. She was hospitalized on her birthday :-( with pneumonia. Since then, she has been hospitalized on four other occasions. During the summer of 1999, she was diagnosed with BPD. Then in September 1999, her pulmonary specialist diagnosed her with asthma.
We have encountered one emergency (which is one too many) with Devina's trach. On February 27, 1999, Devina pulled her trach out while playing in her crib. I felt comfortable stepping out of the room for a minute as long as she was playing with her musical toys. It was a bad idea. Well, I had stepped out of the room and about a couple of minutes later I noticed that I didn't hear her musical toys anymore. I immediately ran back into the room because I could feel that something was wrong. I ran to her crib to find her laid over on her stomach. I turned her over and her lips were blue and her trach was pulled out still attached to the ties. I pulled her out of the crib and placed her on my bed. While screaming for my dad, I put the trach back in and checked her for a heart rate. Thankfully her heart was still beating. So while my mom dialed 911, I proceeded to give Devina breaths with the ambu bag like I was taught. With the oxygen flow turned all the way up, Devina finally started back breathing on her own before the paramedics made it to our house. She was rushed to the hospital and was sent home the same night. She made it through that ordeal fine. Praise God!
Currently, Devina still has her trach at the age of two-years-old. She sees her pulmonary specialist every three months, her pediatrician as needed, and her speech pathologist every two weeks. Besides having the trach and an occasional problem with her lungs, she is as normal as any two-years-old. I am a stay-at-home Mom. I choose to stay at home with Devina because I think it is safer and more beneficial for her at this time. I am thankful that my life has permitted me to be able to stay at home with her.
Devina sees an ENT specialist regularly and has had numerous bronchoscopies done about every five months on average. Well, her doctor has stated that Devina has 70% occlusion to her airway. He also stated that she has an excessive amount of scarring on the right side of the trachea and that she has scar tissue at the front of the vocal folds. So right now he is injecting steroids within that scar tissue hoping that it would possibly loosen the scarring enough for him to laser it away from the vocal folds and the trachea. During her last bronchoscopy (on March 3, 2000), the doctor said that everything is basically the same. He mentioned that maybe in the future months a more serious surgery he called a Rib Graph (reconstructive surgery) could be done.
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Update - May 2002: Devina is currently four years old. She took this particular picture two months ago at Preschool. She is doing very well. She is speaking better. She is active in school, daycare, and church. She loves people, and never meets a stranger. She is knowledgeable about her trach and I teach her to praise God for it because the trach is a blessing. She is not having any problems with her lungs. Her BPD was resolved in 2002. I still give her a nebulizer treatment
(albuteral) every morning even when she is doing fine.
Currently, she does not have an ENT to follow up with her trach care. She has not had one since 2000. Her medical insurance company is currently having issues with many specialists within this state that will not accept the coverage offered for their patients. This is what I am dealing with, but in the mist of that, God is still blessing and aiding my little
Devina. She is doing just great.
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Updated - April 2003: I am very please to inform you of the recent events within Devina's life. Since my last update, I was blessed to have found an ENT doctor in the State of AR that could perform reconstructive surgery on my daughter's airway and accept her insurance. Since August 2002, we have traveled to Little Rock, AR (6-1/2 hrs. drive) to the Children's Hospital eight times.
In October 2002, Devina had a Laryngotracheoplasty (LTR) performed. The surgery was a success. She only spent six days recovering in the hospital.
In January 2003, her doctor's found some scarring that had occurred since surgery and they removed it with Laser surgery. She spent one night in the hospital after that and was sent home with a
Passy-Miur. She did great with the Passy-Miur.
In March of 2003, we went back to ACH (Arkansas Children's Hospital) and the doctors performed one of numerous MLB's
(Microlaryngoscopy) and saw that no more scarring had developed and they decided to move to the next step for her which was capping the
tracheostomy. Devina stayed over night in the hospital and did very well with the cap. She was sent home to wear the cap (only when she was awake) for four weeks.
Devina and I returned to ACH on April 2, 2003 for another MLB with the huge faith of her tracheostomy being removed. Her doctor said that her airway looked great. Though it was not as big as he would have liked for it to be, it was big enough. That was like music to my ears and my heart. On the beautiful Thursday morning of April 3, 2002 at 6:30am, one of the doctors from the team came into Devina's hospital room while she was sleeping and removed her tracheostomy and placed dressing over the stoma. She did not miss a breath and was still sleeping peacefully. I praised God! They kept Devina overnight for monitoring and she did excellently. The following morning, Devina was discharged and sent home.
She is doing great. She went back to school on Monday morning. Everyone was surprised to see her so soon.
Devina is currently 5 years old. She attends HeadStart and Preschool. She does everything like any other five year
old (except for her medical previsions). She understands everything that has happened to her and she credits God for her healing. I would like to encourage every person who reads this page that Jesus is still healing and performing miracles to this very day. Heb 11:1 says,
Faith is the substance of things hoped for, the evidence of things not seen. If you can visibly see it, then it is not faith. You have to have faith to hope for that thing that you cannot see, and believe in it to know that it will happen. My daughter's life is a living testament to that. She knows it and she prays and thank the Lord daily, and so do I.
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Update - May 2003: On May 22, 2003, Devina graduated from
HeadStart/Preschool. I am so proud of her. She will be attending classes in a Summer Program to keep her busy. She loves school. In the fall, she will be attending Kindergarten. Yeah!!!!!!! Devina will continue to receive speech therapy as needed.
She is doing just great without her trach. She is wearing a bandage over her stoma until it completely closes. I have to change the dressing of her stoma area as much as needed which is two to three times a day. She is scheduled to return to ACH in Little Rock, AR on June 27, 2003. If her stoma has not completely closed by that time, the doctor will close it with a minor surgical procedure. She is looking forward to the day when she can get in a kid size pool or play under a sprinkler and get completely wet without being concerned about water entering her body through the front of her neck. We have been truly blessed.
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Update - January 2004: This is an updated school picture that was taken in October 2003. Devina has been doing extremely well since her final surgery in September 2003.
Her voice was very light for a while after her surgery, but it is becoming stronger day by day. Devina is now attending private preschool (in grade K-4). She started in K-5, but I (along with the teacher and
principal) decided to place her a grade back so that she would have a fair opportunity to learn with others on her same educational level.
Devina's medical circumstances caused her to be developmentally delayed for some years, then when she started catching up she remained behind her peers because she missed so many days out of school with frequent appointments at hospitals and clinics. I am very blessed to be able to say that Devina has only missed one day of school since she started (due to a 24 hr stomach virus). She is currently doing very well in school and is learning right along with her peers.
Testimony: On Sunday, January 11, 2003, Devina stood in front of the entire congregation at our church and sang "Jesus Loves Me." She received a standing ovation. I was so filled. She then delivered the welcome for which she made up all by herself. I am so proud of my little girl. She has overcome so much and she continues to do so. I am so grateful to be able to experience God's amazing goodness daily.
Veronica, Devina's Proud Mom
