Thursday, June 4, 2009

John's Story


I realize that everyone does not have the same religious beliefs that I do, however, I am a Christian, and my faith is what carried me through this amazing experience. Trusting that God had a plan and knowing that He controls life and conception, was the glue that held this mama together. Left on my own, I am a worrier.
If we knew what the future held, we would most likely want to change it. But, if we did, we would miss out on the most amazing blessings. My husband, Brett, and I still sit and wonder sometimes, "Did this really happen to us?"
At our 20-week ultrasound with our third child, after having 2 healthy children already, we assumed we were going to find out if it was a boy or a girl. We found out we were having a boy, BUT we also found out that he had unexplained fluid on his body, a condition known as hydrops fetalis.
The doctor told us that he had fluid on his liver and intestines, and set up a Level 2 ultrasound/teleconference with Little Rock for the very next day. Not knowing anything about the condition, we prayed specifically for the liver, because that sounded the most serious. The next day at the ultrasound, we were told that the liver was FINE; but they couldn't find all of the parts to the heart, and there was a big sack of fluid around it. They then scheduled a cardiologist appointment in Little Rock. SO, we prayed for the heart. At the next appointment, we saw our baby's heart and ALL of its parts. It still had a big sack of fluid around it, and we were told that 90% of babies with hydrops fetalis do not make it to term. The 10% that do, have many problems.
The summer that I was pregnant with John there was a 7-week, special series on ABC covering the incredible miracles happening at Arkansas Children's Hospital. Family and friends from several states called and asked, "Is that where you are going to have the baby? That place is amazing!" It was reassurance that our plan to deliver in Little Rock and have John cared for at ACH was the best option.
We continued praying, and God continued to answer very specific prayers in positive ways. I kept telling myself, "God has a plan. All I have to do is cooperate." We went to so many visits in Little Rock, and did every test known to man, that I lost count. John's condition was so bad at one of the visits, the doctor gave us 0% chance of survival. The sack of fluid was weakening his heart and causing it to fail. He also told us that we “could lose John at any time, to deliver in Rogers, and be close to family and friends." That was a hard day, but God continued to reassure me.
I told God, "You gave me this big mouth. You won't waste a miracle on me. I will tell everyone I know what You did for me." I joke now and say that if anyone stands still long enough in Wal Mart, they might just hear it.
The day after our terrible report, the cardiologist (the actual one from the ABC special) called and asked if we wouldn't mind coming down for just one more visit. I said, "Of course we will! I thought the whole medical field had given up on us." The appointment was made for two weeks later.
During the course of the next 2 weeks, 3 different people told me about two verses in the Bible, James 5:14,15.
“Is anyone among you sick? Let him call for the elders of the church and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith shall save the sick, and the Lord will raise him up.”
All of my life, I have grown up in church, and had heard of this passage, but never really thought much of it. It actually sounded kind of "holy rolly” to me, but after exhausting all medical options, we were willing to try anything. After the 3rd person mentioned the same verses in a short period of time, I went to Brett and said, "Do you think we ought to read that?" Of course, Brett agreed, and it was right there in black and white in the Bible. After reading the verses together, we did exactly as it said. He called the elders of our church that night, and they came over the next night. This was something that they had never done before either. It is called the Prayer of Faith.
I knew that God had promised to heal our baby, but I also knew that He could heal him on this earth, or in Heaven. He had a plan.
At that next appointment (two days after the elders had come over), the cardiologist, and the top genetics doctor were performing the ultrasound on John's heart. Brett and I saw it at the same time. We looked at each other, then back at the screen. The fluid that we had been seeing for so many weeks WAS GONE! not just decreased, but GONE! They upped our chances of survival to 10% that day.
During one visit, it was recommended that we have an amniocentesis. We refused, until John was of a viable age and had a chance to survive on his own, in case the amnio sent me into labor. The doctors were certain after all of the negative test results that this could oly be caused by chromosomes. So, we prayed that it would not be chromosomes. At 35 weeks, we agreed to the amnio, and his chromosomes were perfectly normal.
I also pray in the shower, the only place a mom can find a little peace. After all of God's reassurance, I still had the thought cross my mind during a prayer, "I know Lord, but what if..." I barely got that much of my thought out, and I felt the most overwhelming feeling of being scolded, that I even ducked and covered my head. I know that sounds crazy, but, the next thoughts flowing through my head were, "You've got a baby's room to paint, bedding to sew, and this boy is coming, so you better get ready!!!"
There are many more details, many more tests, and many more prayers, but I'll jump to the delivery. John was born at UAMS hospital in Little Rock by C-Section. I got to see him for about 30 seconds, then he was rushed to Children's Hospital, which is only 3 minutes away. His heart was still so weak that he could not pump the blood to inflate his lungs. He was placed on total life support.
It was quite a surreal site to see your child hooked up to so many tubes and machines, but the staff at Children’s gave us such comfort. God provided this hospital, and He created the loving and talented people that work there. Words cannot express my gratitude to the staff at Children’s hospital. The hospital itself is an awesome building, but the people that work there are angels on earth. While staying at the Ronald McDonald house, which is within walking distance of the hospital, I heard every helicopter that landed with another child in need of emergency care. It broke my heart to know that another set of parents were facing the possibility of losing their child, but in the same moment, it warmed my heart to know that their child was in the best possible place in the world!
The peace I had throughout the pregnancy, and while he was in the hospital, passes all understanding. Our doctors at Children’s Hospital informed us that John had holes in his heart, enlarged chambers, calcification in his adrenal glands, over a pound of extra fluid on his tiny body, and the list goes on; but their care and expertise was demonstrated daily by their strategic plan to wean John off the machines and oxygen and into our arms. They were like God’s hands to me. John improved each day under their amazing medical care and monitoring, and was released 29 days later on our 8th wedding anniversary. God gives good gifts.
The thought and attention to detail put into caring for each child at this amazing place always gave us encouragement and hope. From the waiting room to the choice of flavored mask to put a baby to sleep before surgery, everything is designed with a child’s comfort in mind. And, you know what that does for the parent of that child. For the next 6 months, he had every appointment you can think of, from cardiology, nephrology, endocrinology - well, all of the "ologies." At every one of our appointments, the doctors would say, "This was a very sick little boy, but he is within normal range, and we don't ever have to see him again." I have to say, that was the response I had come to expect after all that had happened.
To this day, John has no lasting effects from his condition. He is an energetic, funny, loving, adorable, little guy. He loves soccer, swimming, riding his bike, climbing trees, Star Wars, making people laugh and watching TV. His brother and sister say that "he is going to be a traveling preacher/comedian when he grows up.” He is FULL of LIFE. I love to share his story, because I believe that God is in control of conception and of life, He loves to heal people, He cares about all of the details in your life, and He is still performing miracles.
If you or anyone you know has questions, please feel free to contact me at ktt@usa.com.