Our first Monday's Miracles post comes from some of our best friends! James and April were two of the people who really helped us through our battle with Jaxon. They had been through so much with their own little girl Kylee. I wanted to share their story to launch this new series because I know it will inspire so many of you!!!
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When we think of a miracle it is something extraordinary that amazes us into a state of awe. When you have a baby everyone calls it a miracle, which it is. This time in anyone’s life is just simply amazing. The baby’s coos, wiggles and cute facial expressions keep us in a constant awe with this new miracle. But what happens when your miracle is born different. Some would think it takes away from this beautiful miracle known as your baby. Although it can be overwhelming and we can lose focus at times, this sweet special baby is the biggest miracle you may ever see. For our family it added to our amazement in everything that Kylee ever overcame and accomplished. Anything that Kylee did was a miracle and I began watching for “daily miracles” that God would do in her life. Although we were praying for complete healing for Kylee, at the same time we did not overlook what God was doing every day in her and through her.
Our little miracle, Kylee, was born a pink, round bouncing baby girl on February 4th 1999. We loved her instantly and saw nothing wrong, that is, until you saw her back. She was born with a significant opening on her lower back, called Spina Bifida. This required Kylee to have her first surgery within hours after being born, before she was 1 day old. Surgery went good and they were able to close her back most of the way. We had to learn how to care for this properly so that she would not get an infection. Within a week her Doctors knew that she would need a shunt placed in her head to relieve the pressure accumulating due to closing her back. So her second surgery was scheduled at one week old. God brought her through both of these successfully and after she stayed in the NICU for a total of 3 weeks we prepared to take her home. We had learned how to take care of all of her special needs including catheterizing her every 4 hours around the clock.
We were so excited to have Kylee home that we didn’t care what we would have to do! We did everything the Dr. had told us and lived with minimal sleep as most new parents do. At the time, James worked night shift so he did the middle of the night catheterizations so that I could sleep. That helped so much because I needed to be ready for the morning. Not only was I taking care of Kylee but Shayne, our older daughter, was 19months and a busy toddler. Only through God’s strength could I even accomplish what needed to be done in a day.
Kylee was only home for 3 weeks before we ended up going to the local hospital. It seemed like she had a cold so they kept her overnight. They tried their best but they were not set up for all of the equipment they needed for her. The hospitals power kept turning off the circuit breaker in her room. Kylee didn’t have a cold, she was having common issues of Spina Bifida, which include the inability to swallow correctly. While she was in the hospital she ended up aspirating while eating and placed on a ventilator. This was the first of many scary events. Within a couple of hours they airlifted her to Loma Linda Children’s Hospital. As our whole family stood at the hospital, watching Kylee get loaded into the helicopter, we prayed that God’s hand would be on her through whatever was going on. It’s such a scary feeling to see your 2-month-old fly away in a helicopter but at the same time we all felt the peace of God. We quickly followed by car and arrived before they even had her settled.
We didn’t know what to expect as she was admitted to the Peds ICU. We had a great support system, which consisted of family, friends and our very supportive church but we had no idea what we were headed toward. Nothing could prepare us for it or teach us the way that you learn by living through it. We needed God to strengthen us. God didn’t just walk beside us through the next season but He carried us through the next season. There is no other explanation for the peace that we had. This hospital stay was almost 4 months and in those fours months Kylee had some close calls. She had 7 more surgeries, many procedures and a major medical mishap by a nurse. This malpractice caused Kylee to be on 9 antibiotics for 6 weeks and have many more tests, procedures and medications in addition to what she was already fighting. In this season, Kylee was also pre diagnosed with cancer from a tumor they removed from her brain. After we heard the news of cancer we prayed for a miracle knowing that her tiny little body couldn’t deal with cancer and radiation treatments. Our amazing God healed her from it! When they got the final results back they said they don’t know what it is. We still laugh about this today, that God changed it to something they had never seen.
When we came home from this hospital stay we had even more equipment added to the normal schedule. Kylee came home with oxygen, a kangaroo pump, g-tube, pulse-ox monitor, apnea monitor and 2 suction machines. We had a mini hospital. At 21 years old, and James 22, we were not just young parents of 2 little girls but we also became medically savvy within a few months.
Although Kylee’s first year was trying with several more hospital stays and surgeries, it was a time that we learned so much. Not just medical knowledge but we learned about God and how much He loves us. We loved our little miracle girl but we also knew that God loved her more than we ever could. We learned that God chose us to be her parents and love her and take care of her for Him. What an honor! Kylee was God’s baby! He had his hand on her life constantly as well as ours. Knowing this, made us fall in love, even more, with God. There wasn’t a decision that we made without asking God because we also learned that He was our counselor, comforter and friend. Kylee was not just a miracle by what she overcame but she was also a miracle in what she taught us through her life. We learned to trust that God was with us and leading us in every situation through the years. We relied on God’s strength as Kylee had 8 more surgeries, numerous hospital stays, several ambulance rides, 3 more helicopter rides and many more procedures and appointments.
As Kylee grew older she became stronger but still had many things to overcome. Anything she would accomplish we would tell her “good girl”! So that became one of her first phrases that she said and continued to be her favorite. It was good that Kylee was determined, stubborn, joyful and a silly little girl to accomplish what was needed. She always learned to compensate for what her body lacked. Even though she had P.T and O.T. for years she didn’t usually cooperate with them, she wanted to do things her way. She figured out how to crawl even though she had no use of her legs. She could get anywhere she wanted to and get away from anything or anyone she wanted to. She eventually had a wheelchair that was custom fit to her. This gave her the ability to roll all over the place, and like any child, she liked to go fast. She would get all tangled up with her 100-foot oxygen tubing but we would just untangle it and she would be off again. One of Kylee’s favorite things that she loved was her music. We had kids worship songs playing all of the time but if a song came on that she didn’t like she would immediately crawl to the CD player and remove the cd. She always knew exactly what she wanted and most of the time Kylee just wanted to have fun and play. She enjoyed her life even though it was difficult. She taught us to enjoy today because we never knew if she had tomorrow. She also taught us what it is to have true joy even while going thru a hard time. I know that God gave her peace and was with her everyday and especially in her scary moments. She dealt with pain and difficulties everyday and yet she had joy every day.
Kylee lived a short but complete life of seven years here on earth. Now she lives forever with Jesus, completely healed and completely whole in the arms of her savior. After all, she belonged to Him all along we were just able to care for an angel for a season. While Kylee was here, she was loved by everyone who knew her and she loved her family and friends. Her determination, joy and peace passed all understanding. I am confident in knowing that God placed her in our life for His purpose. She changed our life forever and the lives of many others. She carries an amazing testimony. A true miracle.
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