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The Day That Changed my Life
For those of you who don’t already know this, I use my blog as my journal. It has worked pretty well so far. I used to keep a journal for each child, which was easy with three, but not so easy with twelve, soon to be fourteen. Plus, with our adopted children, much of their life story is missing, which breaks my heart. This blog and my Facebook posts, which I copy and paste at the end of each month, have become my new way of keeping memories alive for my children. That being said, this post is for that reason, to retell a story that is quite long and complicated. This post details the day that changed my life forever.
I looked back to see if I had ever covered this topic before and as far as I can tell, I haven’t. It’s a hard topic for me. People often comment about life being hard now and I can honestly say it is nothing compared to what we went through with our first two children. Now we have money, family that lives close by, older children who want to help, people to lend a hand, and a church that supports us.
Last year I wrote about all the lessons Codey and Kyle’s lives have taught me. You can read about that here. (Blog post) But I have yet to put the words down in writing as to what those first days, months and years were like. They were hard and life altering and it all started on April 29th, 1987.
It was a beautiful day. I remember it well. After work, I had gone shopping with my mom. I loved those moments with my mom. She had always been my best friend and I looked forward to our time together shopping. She took me out to eat before running me to the hospital to meet Dan, who was working, for our second Lamaze class. I was most definitely pregnant. You couldn’t miss my big belly. At this point, I had gone from a 24 inch waist to over 50 inches. I remember I was wearing this goofy Garfield t-shirt and capris so it must have been a nice night. I was a little over 28 weeks along, due July 22nd, and just so BIG! Everyone commented on how big I was and I was constantly asked how close I was to delivering. My mama would smile and say, “She’s having twins!” It was a wonderful time, full of anticipation, everyone was overjoyed at the thought of twins. It was the first grandchildren on both sides. My mom couldn’t wait and I was feeling very blessed.
Dan and I dated through high school. We broke up for a bit at the end of our senior year and when we got back together we knew that we wanted to be together forever. Neither of us wanted to wait. When we married, he was 19 and I had just turned 20. We waited a couple of years before having children, but we knew we wanted a family. I had always dreamed of having a large family and he would say, “Let’s see what God has planned for us.” Dan has always had faith and an understanding of God that was way beyond me. My relationship with God consisted of going to church on Sunday and trying to be good. Dan taught me what grace, faith and trust were.
We were as broke as you could be. We drove a truck that seated two and we couldn’t even afford the back bumper for it. (Yes, all those years ago back bumpers were optional.) We lived in a small apartment. I was paid not much over $5 an hour working as a legal secretary. Dan worked in the laundry at the hospital and was attending the local junior college. When we found out we were having twins, we moved in with Dan’s parents to try and save money for a car and the things we would need. To most people it would have looked like we were barely surviving, but we were happy. We had family that loved and supported us. Dan and I were best friends, we had each other, and we were about to start on this grand adventure called parenthood.
My water broke on the way to the class. I sat there afraid and unsure of what to do. I had just met Dan at the hospital. We were supposed to be attending our second class. We called our doctor and she had us go to the E.R. When things like this happen, it doesn’t seem real. You can’t think. I couldn’t have imagined what was going to happen even if I knew what could happen. I was still picturing the happy ending because I didn’t know any better. And then it began.
They hooked me up to an i.v., they pumped fluid into me, they called in the O.B. The contractions wouldn’t stop. Our doctor called the doctors at the bigger metropolitan hospital and asked them what to do. There was a big debate between the local O.B., our family doctor, and the big town O.B. No one could agree. Local O.B. says let her deliver in the small hospital and move the babies when they come. Big town O.B. says the babies stand a much better chance of surviving if they are delivered at a hospital with a level 3 NICU. The big town O.B. starts to talk about how I could lose my life and we could lose both the boys and decisions have to be made.
We choose to go to the bigger hospital. Life flight, an air ambulance, is called. They loaded me on board and our local doctor, Dr. S, rides with me. Dr. S is afraid I will deliver the boys in air. She takes the place of one of the transport nurses, who now needs to find a ride back to Methodist. Dr. S tells me over and over again that it will be okay, but I can see in her eyes that it is not. We are a long way from o.k.
Not knowing anything about having a baby early, I tell myself they will be small, but it will be okay. I am in the air, sure that we are going to crash, so afraid that I don’t even know what to pray. “Oh God! Oh God! Oh God!” plays over and over again in my head. I remember lying there in that helicopter with tears streaming down my face wondering why this had to happen to me.
I arrive at the hospital in record time. Dan is left driving our “new to us” car – a very old Gremlin. This car almost fell apart at anything over 55 miles per hour. My poor husband had to ride 90 minutes with someone he had never met before on the worst day of his life. I was waiting for my mom, Dan, and the rest of the family. My stepfather actually got them lost and it took them forever to get to me. I had never felt so alone and so afraid in my whole life.
I listened to the whispered discussions while they did lab work and ultrasounds. There was talk of the boys being conjoined. Everything they said scared me just a little bit more. Time seemed to stand still. I couldn’t do this without Dan. I needed him by my side to help make decisions. He finally arrived at the hospital and the decision was made to do a c-section. Kyle was breach and since they couldn’t stop my labor, they needed to get the boys out. They ran down the hallway taking me to the operating room. At 12:04 Codey entered the world at a whopping 2 pounds 7 ounces.
Codey – 2 pounds 7 ounces
One minute later Kyle followed. He weighed 3 pound 8 ounces. In my mind that made him stronger and healthier, but that was not to be the case. Kyle was born with an omphalocele and had many issues. We would later learn he had Beckwith Weidemann Syndrome.
3 pounds 8 ounces – Kyle
I was frustrated because I was infected and had a temperature so they wouldn’t let me in the NICU. It was so hard wanting to be with my babies and not being able to see them. I can’t remember how much time went by before they let me in, but it seemed like forever. They called us in a couple times and then it was the final time. They sat me in a rocker and they put my boy in my arms and they pulled this awful white curtain around us. To this day I can not stand white curtains. It was an open bed unit, which means there was no privacy except for that curtain. I have no idea what I sounded like sitting in that chair and I could have cared less. My dreams of two, little blonde haired beautiful boys was coming to an end. My heart was broken and I let the tears just fall.
Kyle’s death was one of the hardest times of our lives. It was a pretty horrible place to find ourselves – without jobs, or a place to live, and to not be able to afford to bury our son. We had life insurance but Kyle needed to live seven days to be able to claim it and he only lived five. We couldn’t even afford to have the funeral home come down to get Kyle’s body so I held him, wrapped in a blanket, and rode home with mom and Linda, as we drove him the 90 minutes back home.
I remember when the chaplain came up with the idea for us to take Kyle’s body in our car. I kept saying that I couldn’t do this. I could not carry his little body in the car with me. I just couldn’t. But the chaplain was so kind and so sweet and she told me that with God I could do this. She said she knew I was strong enough to be there for my son. She told me it would give me closure and she was right. It was so hard to hand him off at the funeral home. I knew he wasn’t there, but still….
Our family supported us in amazing ways, my mom and stepfather bought him a little white casket. My grandparents gave us two burial plots, one for him and one for Codey. We had a service where my husband stood up and talked. Dan’s main point was to tell others to not let Kyle’s life make them bitter or angry. Dan told them for them to become bitter would dishonor Kyle’s name. Kyle’s life had purpose. Kyle’s life had meaning and he wanted everyone to remember that and move forward.
My favorite/saddest memory of that day was my husband lifting the little white casket off the back of the hearse. Dan didn’t think about pall bearers, all he thought about was taking his little boy to his final resting place. I had brought Kyle into this world and Dan laid him to rest. I will never forget that moment or how much I loved my husband and his sweet, caring heart.
We were lucky that we didn’t have to go home to move our belongings. What little we had was still at his parents. We didn’t even have a nursery to go home to. We had one lone cradle that sat in our room. We had never gotten around to building the other cradle and now it seemed as if it was an omen, like some how we knew or had caused what happened. It’s crazy what your pained mind will believe.
Did I not pray hard enough? Was my faith not strong enough? Did it look like I didn’t care? Where the others right? Did God think we couldn’t handle two sick children? (Someone actually said this to me at Kyle’s service.) Were we being punished for some sin? Why did this happen to us when all we wanted was to have a child to love. Why? Why? Why?
We moved into the Ronald McDonald House and lived there long enough to kicked out. You can stay three months and then they remind you that you might need to make some other plans. We had to decide what to do with our lives. Codey was not quickly getting better. Dan decided that he wanted to make a difference in the lives of babies like our boys. He decided to become a doctor, which is a far cry from the man I married who was thinking of being an art teacher. Dan applied to Drake University to get his B.A. in biology. We got into married student housing right away. I started working temp jobs for attorneys in town so I could pick and choose when I worked.
Codey was on maximum ventilator settings for many months. Time and time again they would say there is no more support we can give him. He was on 100% oxygen. He would get sick, we would call down our family, and wait. We waited for him to die. We waited and waited and waited. I lost track of how many times we waited for Codey to die. Over and over again this happened and each time Codey pulled through. You can only wait for your child to die so many times before you decide that maybe it’s time to live.
We had even been asked a few times if we wanted to discontinue support, but how do you discontinue support on a child who is not brain dead? How do you do that when your child is playing and kicking in his bed? Both Dan and I believed that if it was Codey’s time, God would call him home. Kyle was on the same maximum settings and he never survived. Dan and I just couldn’t make that decision. We had to leave it in God’s hands.
He was such a sweet, sweet baby!
We spent all our first holidays in that hospital. We had gone through Mother’s Day, Father’s Day, July 4th, Labor Day, Thanksgiving and now we were celebrating Christmas. It was a very sad time, although the nurses in the unit tried to make it festive. We came in one morning to find Codey in a big boy crib. The nurses had got together and bought him a regular bed. Dan bought battery powered Christmas lights for above his bed. I remember other families complaining and the nurses telling them if they wanted to stay 8 months, they could have one too.
One of the funniest memories of this crib, was when Codey extubated himself. He was very good at extubating himself. Jan had even made him his own fabric arm restraints to try and keep his hands away from his face. Anyway, Codey extubated himself and no one could figure out how to get the side of the crib down. One doctor had to hold him and the other had to intubate him. It became a running joke in the unit as to how many years of schooling it takes to be able to put the side of a crib down.
In January, he would be transferred to the university hospital, 90 miles away, to have a tracheostomy placed. The doctors at our local hospital told us they thought they would kill him if they tried to do the surgery and they wanted us to go somewhere where the surgeons had performed more of these surgeries. I still have the utmost respect for these doctors who decided to do what was in the best interest of Codey.
On the way out the door, the NICU informed us that Codey had hydrocephalus that they thought was being somewhat controlled by large doses of lasix. A not so nice surprise but at the time we had no clue what that would mean for our little guy. Codey was transferred and the primary nurse, Jan, who had cared for our son for the past 8 months, rode along in the ambulance with him.
It was very hard being in the hospital that long. Not many people visited or seem to care about Codey. It felt like no one really knew what to do, but Jan loved Codey. She protected Codey and she still remembers Codey. During a horrible, horrible time it was nice to know that someone truly cared about our boy. As a nurse or doctor, don’t ever forget the impact your lives have on those you care for. Jan still remembers Codey’s birthdays. She has even come to our older children’s graduation parties. She is loved and will always have a special place in our hearts.
Somewhere in the midst of all this waiting, I found out I was pregnant. Talk about the perfect timing. We hadn’t even made it out of the hospital with our first child and I was pregnant again. At the time, this would seem like the worst possible thing that could happen to us, but time would show us what a blessing Zachary was and how perfect God’s plan is.
Playing with Zach!
After a short stay at the University Hospital, we went back to the local hospital but to the PICU this time. The PICU would be the place where everything would change for Codey. He had his first birthday party there and the local news covered this amazing story of the little boy who had yet to spend a day at home. At that time, Codey was on oxygen and had a tracheostomy but he was doing well. He was sitting and talking. He had a horrible case of bronchopulmonary dysplasia and his lungs just needed time to heal.
At 14 months of age we would go home for a day. It was a wonderful time to finally get him home. We surprised Dan’s mom by not telling her that Codey was coming home. It was a day of happiness, but it didn’t last long. We were right back in the PICU.
Eventually Codey required a shunt for hydrocephalus. He had many shunt malufunctions and infections. During an infection Codey would have the bleed that would change our lives. When your shunt becomes infected, you need to pull that shunt and treat the patient with i.v. antibiotics before you can place a new shunt. After the shunt removal surgery, Codey just wouldn’t wake up. We kept telling the nurses, residents, anyone who would listen that he wasn’t acting right. They would tell us he was just sleepy from surgery. We tried all day long to get someone to listen to us. They finally had to pay attention when Codey started seizing. By the time they took him to the O.R. there was a small amount of brain squished up against the inside of his head. The whole middle was blood. Somehow a vessel had been torn when they pulled the shunt out. They gave us the choice to treat him or let him go. I know what they wanted us to do, but I couldn’t watch it. Dan and I decided if he was going to die, we wanted it to be in surgery where he would be unaware of the pain. We just couldn’t watch it anymore. He was seizing so bad that only his head and his feet were on the bed. It was horrible to watch your child writhe in so much pain.
The neurologist helped us call our family. Everyone said it would only be a matter of time, but it wasn’t Codey’s time. He came out of surgery and slowly got better. We were given the prognosis that they thought he would be blind, deaf, and in a vegetative state. Those are pretty grim things for a parent to hear. What had we done? Should we have just let him go? It is hard when you are in the middle of it. How can anyone make those decisions? When someone confronts you with this after you have fought so hard, how can you possibly give up now?
On August 5, 1988, Codey was readmitted to the hospital. I remember all the nurses asking us when the last time Dan and I had gone on a date together. Dan and I laughed. They told us Codey was stable and tried to convince us to go. One of the nurses who helped at home was even on that night. They talked us in to going out. I was 35 weeks pregnant and very tired, having a date with my husband sounded like a wonderful plan. They even joked that this would be a good time to have the baby since we now had a sitter for Codey. We left the unit, chuckling to ourselves. We ate and went to see a movie and my water broke. Zachary was born later that night. As always, God’s timing is perfect.
Life was hard with Codey at home. Dan had decided to go to medical school. We were 3 hours away from family. Codey was g-tube fed, on oxygen, had a tracheostomy, and was on a ventilator. Zach was a few months old when we moved. We had issues with nursing and finally just gave up and did it ourselves. Life was difficult then. We didn’t have any extra cash. We had just moved and knew no one in the town. There were many times we felt very, very alone.
Codey has spent an unbelievable amount of time in the hospital. He has had a 14 month stay; two six month stays; two, three and four months stays over and over again. He has had close to 100 surgeries and procedures. We have been through so much with him. He has had about every complication you can have from the medications he was on – gall stones, kidney stones, ruined teeth, etc. and if there could be a complication from a surgery, it would happen to Codey. I have watched him endure more procedures than any child should have to go through. I have seen him beg to be put on a gurney so they could take him to surgery and relieve the pain in his head. His poor little head has been shaved over and over again for surgery. At one time he had three shunts in to try and release the pressures. Eventually he had so much scar tissue in his ventricles that it became impossible to put in enough shunts to drain it. At that point they did a complicated procedure with a scope to take down the numerous bands of scar tissue that had built up in his ventricles over the years. He has so much scar tissue in his abdomen from all the infections and shunts that they eventually had to put the shunt tubing into a blood vessel in his neck. He has had tubes put in his ears, a g-tube placed, cholecystectomy, heel cord release, and a tracheotomy.
Codey is not blind. Codey is not deaf. It’s true he isn’t able to walk. He prefers to scoot around on the floor. He watches t.v. He plays with his toys. He is loved by his family. He has changed my life. Many people think Codey doesn’t live a life that has worth, but I would disagree. I believe that Codey is fulfilling his plan. I believe he is probably doing it better than most of us. Codey doesn’t say hurtful words to other people. Codey doesn’t lie, steal or cheat. Codey isn’t arrogant or mean. Codey is fulfilling the plan God set out for him to do. Codey is humble and content. He is not striving for worldly things and for that reason, one day my son will have great rewards in heaven. Life on earth is but a speck of time. Heaven is forever. I hold fast to that truth.
Matthew 18:3-4 And said, Verily I say unto you, except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven. Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven.
I do not believe God set out for Codey to be hurt. I believe through free will and random chance things happen to people. I believe God can stop things from happening and God often does that, but that God sometimes allow things to happen for the good of all involved. His ways are not our ways. We can not possibly comprehend the why. It may not be what we would want or choose, but it can still be for good. There is no way 27 years ago that I could have seen all that would come to be because of Codey and Kyle’s lives.
I no longer question why it had to happen to me. Why not me? Who am I to think I am better than anyone else? I am a sinner just like everyone else. If Codey had to go through all of this, then I am glad I got to be his mother. I am happy that I got to be the one to comfort Codey. I am a better person for having had Codey. I wish Codey hadn’t had to suffer, but I can’t change what happened without it changing how it changed us so if you asked me “Do I wish this hadn’t happened?” – of course I wish this hadn’t happened but I have been blessed to see the blessings that have come out of the suffering. I truly believe God has used the bad for good according to His will. The changes in Dan’s and my heart because of the boys are huge and I am not arrogant enough to believe I would have understood anything without those lessons. It would change my love for hurting children. It would change our knowing that we could handle anything that happened on our journey. It would change us knowing what is truly important. It would change my walk and my journey with God which was strengthened through these lessons.
I have often wondered why these things happened to my son. Why did Codey have to suffer? Was it some sin that I had done that Codey was now paying for? The verse that brought me the most comfort with regard to that question is the story of the child who was born blind told in John 9. John 9:3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.
So the works of God might be displayed in him, that is a pretty good way to live your life and my son has done it well.
