Cooper's Story

cooper's story

On July 19, 2000, my son Cooper was born at almost 36 weeks. We knew things weren’t right when his heart decelerated for almost 24 hours and then upon breaking my water there was meconium, but that didn’t prepare me for what was to come. After 12 hours of labor, the doctor chose to do a vacuum assist, due to the fact that he kept slipping back in. Finally, they got him out. When they did he was floppy and not breathing. After resuscitating him multiple times they finally had to intibate him. I remember them placing him on my chest for just a split second and then taking him away. As I look over at my son I remember saying, “God please take me, just let him be okay”.

They took him down to the Intensive Care to prepare him for transport to Lucille Packard Children’s Hospital. The entire family was in intensive care and I was left sitting in the delivery room alone wanting to see Cooper, but the nurses kept telling me that I couldn’t. My epidural had pretty much worn off by this time, so I decided that I was going to see him no matter what they said. A nurse came up to me and asked me what I was doing? I said, “I am going to see my son.” They said, “No we need to move you to your room.” I thought to myself, “I am in my room.” What I didn’t realize until months later is that they move the new mothers whose babies are going to die to the other side of labor and delivery so that we can’t hear the other new mothers and their newborns. Wow!

I finally made my way down to the Intensive Care as they were transporting Cooper away. I was exhausted by this time and returned to my empty room. The last thing I remember is taking a cup full of pills and going to sleep.

I woke up the next morning and called over to the NICU to find out how Cooper was doing. They said that they were getting ready to feed him and that he was stabilizing and that he would probably get to come home in a week. What a relief! The nurses arrived with the proverbial breast pump and all of the paraphernalia that goes with it. I was told that Cooper was going to need all of the milk that he could get. I pumped and pumped. Who knew I was Betsy the cow? I could have supplied enough milk for a whole herd of kids. By this time the entire family had arrived. It was 3:00 p.m. when the call came. My Husband at the time answered the phone. All I remember is a lot of, “Uh huhs,” and then, “We’ll be right there.” At that point he asked the whole family to please step out of the room. And then the news came. He said,” That was Dr. Huhn from Neuro surgery. Apparently, they noticed blood in Cooper’s eye so they did a cat scan. Cooper has suffered a massive brain hemorrhage on his right side and they want us there right now.”

I remember feeling the most intense pain of my life and then letting out a blood-curdling scream. I grabbed my purse and we left the hospital, literally running to the car because they needed to start the surgery within the hour. We got to Stanford and met with Dr. Huhn, Chief of Neurosurgery. The entire right side of Cooper’s brain had shifted across the midline into the left side of his brain. Dr. Huen said, “You have just a few minutes to make up your mind. If we operate he will most likely die.”

“And if we do nothing?” I asked.

“It is not likely that he will make it through the night. Please take a few minutes and think about it,” and he left the room.

We looked at each other and simultaneously said,” Then we do nothing.”

We called Dr. Huhn back in the room and I said to him, “If God is going to take him then I want him taken with a whole brain.” We resumed to the NICU.

I remember walking up to the incubator and looking at my baby and thinking to myself, “Oh my God my son is going to die!” I was numb all over. It felt like a bad dream and I kept hoping I was going to wake up soon. I couldn’t even hold him. I didn’t want to get attached because I knew how much it would hurt to say goodbye. My entire family took shifts holding him; after giving birth less than 24 hours prior I was exhausted I remember just wanting to get out of there.

After receiving my stat order of Valium, I took one and headed for the elevator to go downstairs where I could be alone. I remember sliding down the wall into a fetal position and crying like I had never cried before. I didn’t want everyone to see me, as I have always been the pillar of strength. I went back upstairs and tried to rest for a while.

When I woke up I went to see if anyone else was awake. It just so happened that my dad was. My dad said” “You know what we should do? We should have a baptismal for Cooper.” I thought that was a great idea. We called all of our family and friends and let them know that we had made the decision to take him off of life support. I didn’t want him hooked up to anything except what was absolutely necessary. The doctors said once we extabated him that he would robably pass in anywhere from an hour to six hours, but most likely he would die in my arms. It was important to me that he had a dignified baptismal. We put him in this little white gown, dressing him for the very last time, and brought him into the room. To our surprise, 30 of our closest friends and family were there to support us and to also say their goodbyes. This was the toughest day of my entire life; having to say goodbye to my two-day-old son.

The next 3 weeks were full of miracles. You have to understand that Cooper had a myriad of complications. It wasn’t just the hemorrhage. It was hydrocephalus, his kidneys, severe reflux, and seizures. I guess you are probably wondering… He lived, what a little miracle baby!

Over the next 3 weeks, I spent a lot of time on the Internet educating myself on gastroenterology, neurology, and neuroscience. Since Cooper had hydrocephalus, they said that he would most likely have to be shunted. They also thought he had billiary atresia, which is essentially an obstruction of the liver. When the doctors performed the Nissan Fundoplication, which is where they put a wrap around the esophagus to control/stop reflux, they also placed a g tube, as Cooper did not have the sucking reflex that babies typically have. During the surgery they performed a liver biopsy as well to rule out billiary atresia. Thank God he didn’t have it, as I knew he didn’t. Every day I would look at his chart to see where his direct billirubin levels were, and each day they would go down.

This brings us to late August. Cooper had been in the hospital for over four weeks and they scheduled a case conference; nine of Stanford’s finest and me. Can I tell you how intimidating it was? I had a gigantic list of questions. From a neurological standpoint they said, “The best you can hope for is that Cooper will be able to blink.”

“You mean he is going to be a vegetable?” I began to cry. Then I got up from the meeting and went back to the NICU. As I was standing their Dr. Stevenson, Chief of Neonatology, came in the room. We both stood there and just watched Cooper. As we were watching Cooper his left hand moved, with very fluid movements. Dr. Stevenson said to me,”I am not trying to give you false hope Tracy, but the hand is the window to the brain.” I looked at him and smiled. That was the defining moment of my life. It was at that moment that I realized what this was all for. Cooper was going to be okay, I didn’t know how or why, but I knew that he was going to be okay. I knew that he had been sent here for a purpose and that we were somehow going to help other parents. From that day forward I never looked back. I had already been through the worst of it.

Of course they told me that Cooper would not survive beyond his first year. Each and every day that I had him was a blessing in so many ways. I learned how to literally live each day as if it were his last and truly appreciate this gift I had been given.

The next hurdle was leaving the hospital and transitioning to home. That was quite an experience. What did I know about feeding machines and g tubes? That was only the beginning to Mini Med School 101. I was meeting with social workers and case managers and asking them, “What do I do now?” They gave me a photo copied resource handout, half of which the numbers were disconnected, and I began researching. Finally, I got information about the Regional Center.

They were such a big help. This was a whole learning process in itself. Well, there I was: back to work, traveling, I have a child that has to be fed by a g tube every 3 hours, and feeling so cheated. Where was Cooper supposed to go for daycare?

I hired a nanny service. Big mistake! I think the nanny lasted for 5 weeks, or at least until Cooper managed to pull his g tube out when she wasn’t watching carefully enough. I will never forget it. We were having our departmental retreat and I got a call from the nanny saying that the paramedics were there and Cooper’s g tube was out. Oh My God! You can imagine how quickly I got from Mountain View to Dublin.

We were on our way to Stanford once again. We got there, they put it back in, and all was well again, except for the nanny. She was fired! At this point I managed to get my company to allow me to work from home 3 days a week until I could find alternate care.

Finally, after 3 months, we found a nurse who happened to run an in home daycare center. That was great! It was the best of both worlds. I was so relieved to know that Cooper was well taken care of.

On January 18th, 2001, Copper started having grand mal seizures, later diagnosed as a rare seizure disorder called hypsarythmia. Back to the hospital we go for a slight chance at a cure. Cooper was admitted for an ACTH treatment. It was going to be about 12 weeks of daily injections. Little did I know, I was going to have to face one of my biggest fears since age 2, needles.

The nurse came in the second day with a syringe and said, “It is time to learn how to give injections.”

“What? You mean they aren’t sending a nurse home with us to do this?”

“No,” she said, “You have to do it and you’re going to do it right now on me.” Yikes! She explained how to do it and well I did it. I must say I was a little happy giving her that injection for putting me through the torture. She said, “Now it’s time to give Cooper his injection.” I thought I was going to faint, but I took a deep breath did everything she said, and well, he didn’t even cry. I did it! You would have thought I won a million dollars.

We went home again, and thank God for Carolyn our daycare nurse, she was amazing. I don’t know what we would have done without her. Cooper’s hypsarythmia was gone after 10 weeks. Only a 20% chance of it being cured and of course our little wonder boy pulls through. Thank you to Dr. Sanger for taking the chance on ACTH.

Several weeks later I had to go on a business trip. I remember sitting in my hotel room thinking, “What if there was a daycare center with lots of Carolyn’s?” I wrote out the business plan and came up with the name, “A Brighter Tomorrow.” Then 9/11 happened and it just wasn’t the time so I put the idea on the shelf. By this time Carolyn was getting ready to have a baby. We had another nurse and Carolyn part time, but I just couldn’t manage it all anymore. I decided that I should stay at home with Cooper and focus on him for a while so I quit my job.

It is a good thing that I did because in August, 2002, he began having petite mal seizures. It started with just one, then two, and by October, it was well over 30 in a 24-hour period. Dr. Sanger referred us to an epileptic specialist, Dr. Olson, so that he could order an EEG to determine the severity of the seizures. The EEG results came back at the end of October and it wasn’t good. Cooper had seizures in the frontal, parietal, and occipital lobes. The medications were not helping; I think we had been through 6 at this point. The only other option we had besides Cooper suffering was surgery.

Once again I began researching, this time Hemispherectomies. Partial, full, you name it. We completed multiple tests at this point and it was very clear that Cooper was a candidate for the surgery. My Ex Husband was scared to death, but I knew that it was Cooper’s only shot at ever being able to develop. You must understand that by this point Cooper was experiencing about 60 seizures in a 24-hour period. He was falling and getting hurt, he wasn’t sleeping and neither was I. It was the hardest time of my life.

In April, 2003, we had our final test. Sure enough the surgery is on and we get a date, July 9th. I never wavered about the surgery until a week before. I began having nightmares that Cooper was going to die. Then I realized that I had no choice, if Cooper didn’t have this surgery he was going to suffer, so surgery was the only choice.

Cooper and I went in for the final meeting with Dr. Olson and Dr. Huhn to discuss the procedure in depth. These are two of the finest Doctor’s I have ever had the privilege of knowing. It was set, two days away.

The day of surgery I was a wreck. There were so many variables and so many unknowns. Dr. Huhn came out and told us that the surgery went well and that they were extremely conservative. Neurosurgery performed a partial resection of the occipital and parietal lobes. Cooper had limited complications from the surgery. Post op we had a little scare but it turned out that he had a bad reaction to the steroids.

The good news is that we are now in December, 2003, and Cooper is still seizure free. Cooper has lost no dexterity on his left side and his speech has improved dramatically. He was hyper sensitive around his mouth before the surgery and now can eat all textures of food and is self feeding. Cognitively he is much more aware of his surroundings, people, his likes and dislikes. His overall mobility is much better and he is now actually taking steps!

To All Parents:

This is the hardest situation you will ever have to face in your life. You are going to grieve, and rightfully so. You thought you were going to have a healthy child and you didn’t. Allow yourself and your family to grieve. While you may have not lost your child through death, you lost that experience that every parent to be dreams of; coming home from the hospital with a normal healthy baby. There will be times that you may feel that it would have been easier if your child would have passed. I am here to tell you otherwise. You have one of two choices, you can let it get you down or you can embrace this amazing gift that you have been given. I use to get the, “God will never give you more than you can handle,” or whatever faith you have, and I use to think yah right! Ultimately they were right.

Cooper is a very special little boy. Granted it is no picnic being a single mom with a special needs child, but I will tell you that Cooper has taught me more about love, faith, and commitment in his short 3 years then I had learned in my previous 29 years. Without this challenge there would have never been, “A Brighter Today.” Remember as parents that you too are very special and for whatever reason you were “chosen” to have this child. My advice, for whatever it is worth, is to find the good no matter how tough it may seem at the time. Sound trite? Maybe so, but I know first hand that things can always be worse.

More importantly for you, it does get easier. Just remember, it’s the little things in life, no matter how small, cherish them.

A Brighter Today is my gift to you.

Thank you to all of the amazing doctors and nurses at Lucille Packard Children’s Hospital for giving Cooper his life back!

To my family, especially my Mom and Dad, thank you for all of your love and support over the last three years. To all of my friends, thank you for just being there. Thank you to all of the case managers, therapists and support staff at the Regional Center for your faith, commitment, and continued support.

And to my son Cooper, this daycare center and the daycare centers to come are dedicated to you, for you have taught me that it is not about a brighter tomorrow but “A Brighter Today.”

Last but not least to Kenny, Cooper's Dad and my best friend. Divorce is not easy, being friends is even more difficult. Somehow, we have managed to become best friends and the greatest support system to the most important thing in the world, Cooper.