HOPE FOR KINZLEY GRACE WORLEY

HOPE FOR KINZLEY GRACE WORLEY

Hello everyone,

My name is Suzanne Faust. I am starting a GoFundMe page to help my grandson, Ty Worley, and his Fiance, Emilly Lethcoe. By helping these two deserving people with basic financial needs, they can spend more time focusing on their special needs newborn.

On January 5th at 4:55 PM, Ty and Emilly were blessed with the arrival of a much anticipated baby girl they named Kinzley Grace. It had been a difficult high risk pregnancy, but the delivery went well. The entire family welcomed the new baby girl, the first girl in my grandchild/great grandchild line. Kinzley weighed six pounds, four ounces and was healthy, except for a deformity of her right ear. Nevertheless mom, dad, and baby were a happy little family.

That happiness was short-lived however, when Ty and Emilly learned that overnght, while Kinzley was in the hospital nursery, she had stopped breathing to the point that her legs were almost black. They learned that she would need to be transported to the NICU at Nicwonger Children's Hospital at Johnson City Medical Center in Johnson City, TN.

Our main concern at that time was, of course, would Kinzley live. The other concern was, did she suffer hypoxia (lack of oxygen) to the point that she would be developmentally delayed.

The next few days were an emotional roller coaster. Kinzley's main challenge was her episodes of apnea, when she would stop breathing. She was put on a C-pap bubble connected to oxygen to help keep her oxygen levels up. And because of the risk of aspiration, she was put on an NG (nasogastric) feeding tube.

Within a few days Ty and Emilly were told that Kinzley most likely had CHARGE Syndrome, a rare genetic disorder involving many organs and deformities. The deformity of her right ear meant that she would most likely be deaf in that ear. They also learned that Kinzley has a deformity of her right eye called Coloboma which would mean decreased vision, possibly to the point of being legally blind. On the bright side however, they were relieved to learn that Kinzley's kidneys and heart were healthy. We are learning to find blessings where we can.

On the eighth day of Kinzley's life, Emilly got a phone call saying that the baby would be having abdominal surgery that day. During a swallow study, the imaging showed that her intestines were all on the left side of her abdomen and there was concern that the bowel would "die" due to decreased blood flow. The surgery went well, but it was a set back. Her guardian angel was surely watching over her, though. Had this not been found, it could have turned into a critical situation.

As I write this, Kinzley is at Vanderbilt Hospital awaiting surgery to correct the deformities with her right nasal passage (another common deformity with CHARGE syndrome) and possibly addressing the soft cleft palate. These two problems are affecting Kinzley's ability to feed from a bottle and increases the risk for aspiration. It was difficult to see her leave us, but we know she is in good hands. We are praying for a good outcome with the surgery.

With these very difficult challenges in their life involving their newborn, financial worries are the last thing Ty and Emilly need. Ty has a good job as a delivery driver, but Emilly had to quit her job because of the high risk pregnancy. She had planned on returning to work as soon as they were settled into a routine with their newborn. But due to Kinzley's disabilities, that will not happen anytime soon. Getting by on one income has been stressful and challenging.

Add to that concerns about their 22 year-old vehicle getting them back and forth to the hospital and the many future appointments to specialists, therapy, and surgeries. The need for a new set of tires is forthcoming.

Ty and Emilly met in high school and have been together since. They have basically been on their own. Emilly was enrolled in college, but their vehicle situation made that almost impossible. She is hoping to return one day.

It has been difficult as Ty's grandmother to see these two "kids" (they are both 22) struggling to build a life together. They are blessed with a beautiful three-year-old boy who is happy, smart, and healthy. They are wonderful, loving parents. And just good people.

I am hoping to raise $4,300.00 which will help them with basic living expenses for the next several months, travel expenses, and vehicle maintenance.

Whatever donation you are comfortable with will be greatly appreciated. If you are not able to donate, sharing this site on your social media, or just sending positive thoughts and prayers their way will help.

We have already received so much love and support, and that has truly helped us all get through this difficult time.

Update: February 2, 2023

Emilly and I returned from a three day trip to Vanderbilt Children's Hospital on Tuesday, January 31st. It was wonderful to spend time with little Kinzley. She is doing pretty well but still has several issues affecting her. We spoke with several healthcare providers on her team and were able to get a clearer picture of the plan going forward.

The major problem that Kinzley has is impaired air exchange caused by her Choanal Atresia ( a complete blockage of her right nasal passage). The primary reason for the transfer to Vanderbilt was surgery to correct that. The surgery had been scheduled for Monday, January 29th, but was rescheduled to February 2nd. As I write this Kinzley is in surgery. Besides correcting her nasal passage, they will also scope her esophagus to evaluate the structures. They may need to do some mild stretching. I am sending a prayer to her guardian angels to get her through safely with good results and recovery time.

Vanderbilt also did a CT scan of her head to examine the structures within her ears. We learned that her middle ear is malformed, but the cochlea is normal. This means that she will be able to hear with a special device called a BAHA (bone assisted hearing aid). This has been ordered and she will be fitted for it in a week or two. It is a headband-like device with a hearing aid attached. Ty and Emilly will need to travel to Vanderbilt for training. Photo below shows Kinzley getting PT.

Her vision cannot be fully assessed until she is four months old, but the pediatric ophthalmologist did say that she can see "some light", which is evident when she turns her head toward light. We will just table that concern for the time being. Our mantra through this entire ordeal has been "One thing at a time". In the meantime, Ty and Emilly are considering ways to make their home vision disabled friendly.

There will be several trips to Vanderbilt in the future, and numerous trips to outpatient therapies and specialists when Kinzley gets home. That said, the importance of the financial support from our donors cannot be overstated. Once again, we are very grateful to everyone.

Update: February 14th, 2023

Apologies for the delay on an update. The death of my brother meant complicated travel plans and a trip to Wisconsin.

I am happy to say that the surgery on 02/02 to fix the blockage in Kinzley's right nasal passage went well. She had been on humidified forced air to keep her oxygen levels up, but she is now on room air and her oxygen levels are at, or close to 100%! With this major step forward she has been moved to a NICU "step down" room where she is not on continuous monitoring. A CT scan was done after surgery. It confirmed the success of the surgery, and also examined the ear structures. As suspected, both ears are malformed internally, even though the outer structure on the left is near normal. Below is a picture of Kinzley's right ear.

One thing that had been diagnosed previously, but I forgot to mention was a malformation of Kinzley's cervical spine. She has a C4-C5 fusion. It is causing some range of motion difficulties, but PT should help. This problem will be addressed at an outpatient level in the future.

The next step has been succesful bottle feeding without complications. After waiting a few days to recover from surgery, this process was started. Because of her cleft soft palate a special bottle was used. She initially was only able to tolerate a small amount without difficulty. She has slowly advanced and is typically taking close to 80% of the feeding, although she does tire easily When she is able to tolerate at least 80% of her feeding for two days straight, the orogastric feeding tube can be removed. She can then be discharged to home.

Ty and Emilly are leaving for Vanderbilt later today. They have rented a car. Kinzley's room has a futon couch, so they will be sleeping in her room. There is a possibility that they will be bringing Kinzley home with them. If not, we will be taking a trip back there in a week or two.

In anticipation of that happy day, Emilly, who enjoys doing crafts, has made two cute t-shirts; one for mama, one for baby. She will bring them along on this trip. Fingers crossed!