Kevin’s Mom

May 28th, 2008 | by Matt |

(Matt) In the time since I wrote my eulogy for Kevin’s funeral, I’ve had many thoughts of things I should have said and stories I could have told. Although many people knew him well and no amount of words could really capture who he was, I still have this desire to make sure everyone knows how great he was. Maybe it’s the dad in me, still wanting to show off his little boy and still so proud to have been allowed to be his daddy. In the next few days I will post some of the thoughts and favorite memories I’ve had over the last few weeks.

But first, I want to tell the world about Kevin’s mom – just in case someone doesn’t know how lucky he was. There are poems and sayings about how kids with special challenges are reserved for those mothers who can handle it – who have the strength and love to be able to raise them and give them every chance they can. I have to wonder if there is some truth to that. In order to truly understand Kevin’s life and appreciate how he even got to day one, you need to know how hard his mom fought to get him here. This is going to be a long story…

At 16 weeks, on an otherwise normal Monday, Dawn called me from her doctor’s visit as I was getting Emily ready for gymnastics practice. She was crying. She said she couldn’t drive home, and I needed to come pick her up as soon as possible. I drove there and found her in the parking lot crying in the car. The doctor had picked up the baby’s heartbeat but it was very low – low enough that she knew it wasn’t good. After us trying for quite some time to get pregnant and having an otherwise normal pregnancy up to this point, she was heartbroken. They told her to go home, and for us to go to Iowa City at 20 weeks for a level 2 ultrasound. There was nothing else they could do. This was the first time we thought we had lost our baby, which we had just found out was a boy.

Less than 2 worry-filled weeks later, Dawn felt that she needed to go in to her doctor again. She was worried and needed to get the baby checked again, and it had to be today. This was the first time that I learned to just give in and trust her instincts, because she is (almost!) always right. Call it luck or fate or whatever you wish, but that day in the doctor’s office a wonderful woman named Dr. Vickie Pyevich (pediatric cardiologist) was training the ultrasound techs about recognizing fetal heart problems from an ultrasound. We got in shortly before she was to leave, and she agreed to take a look at Dawn before she left. She was the first to recognize and diagnose Kevin as having L-TGA (the lower ventricles of the heart were switched around) and complete heart block. This was why the heart monitor was picking up a low heart rate – the bottom chambers of the heart were not beating in sync with the top. Since we knew nothing about the anatomy of the heart at the time, this was hard to understand and very overwhelming, but she reassured us that this was not necessarily a fatal diagnosis, and there was a chance that he be born and have a life. There was hope.

Dawn came home from this visit as determined as ever. She read everything she could about congenital heart disease and tried to understand everything that may be facing our boy during the pregnancy and his life, if he were to make it. If there was anything she could do, she would do it. If there was any information she could absorb to try to make the best decisions for him, she would learn it. If there were any questions that needed to be asked, she would ask them. She would give this little boy every fighting chance she could give him.

We went to Iowa City at 20 weeks more informed than before, a little hopeful, but still knowing that things could turn out very badly. During the ultrasound, we could tell that the tech and doctor were proceeding with caution and choosing their words wisely. When they came in and sat down with us in a way that said “bad news”, it was another low point. Our baby boy had a serious heart problem, and they didn’t think he had a good chance of surviving. They said that under these circumstances many people consider termination and we had some long discussions with doctors and nurses about what his condition really was and what kind of future he was facing. We took home some books about losing your baby and how to deal with it. It was the second time that we thought we had lost our little boy.

After talking again with Dr. Pyevich, Dawn was reassured that there was some hope and all was not lost. If she wanted to fight on, there were things that could be done. We set up another appointment in Iowa City to understand even more about what Kevin had and what could maybe be done.

Five days later we were in Iowa City again for another ultrasound and to talk to more doctors. We were told that Kevin would certainly need a pacemaker at birth, and there were special ones small enough for newborns. But his heart rate was still low, and he may not make it long enough in the womb at that rate, so they decided to recommend an unconventional medicine that would raise the baby’s heart rate. Unfortunately, it also raised Dawn’s heart rate. And it had to be taken every four hours, around the clock, 24 hours a day, for the rest of the pregnancy. Dawn didn’t hesitate. She would do it. If she could just get him to 30 weeks and 3 pounds, he would be big enough to have the pacemaker operation. There was a chance, and she would do anything in her power to give it to him.

Thus began Dawn’s long journey with a kitchen timer. We set it to go off every 4 hours, and I’ve never seen anyone so dedicated to a schedule for such a long period. She took the timer with her, had it throughout the day, and had it on her night stand every night. She took every pill – six a day, every day, for more than 16 weeks. Over 600 pills. And not only did it raise the baby’s heart rate, but it raised hers as well. She became tired much more easily, she needed to rest more often, and her body was trying to adjust to feeling like it was always pumping on adrenaline. It was hard for her to sleep and hard for her to relax. But she never complained and never thought twice, because this may be the only chance our little boy had.

Five days after that visit to Iowa City, we were fortunate enough to be introduced to a doctor in Madison, Wisconsin who was an expert in fetal heart rhythym problems and was doing a study to help diagnose and understand them. She may be able to help us determine how our boy was doing on the medicine, if he was getting into trouble, and when we would need to deliver him to give him his best shot at life. We made four separate 4-hour trips to Madison, where Dawn was placed in a contraption that is hard to describe. It was a small room, maybe a 20-foot cube, that was completely enclosed with a huge door in order to isolate the delicate signals that were being used. They used a big camera, for lack of a better word, that might remind you of an enlarged version of the x-ray machine they use at the Dentist. Dawn had to lay in an uncomfortable position for up to a half hour at a time, all alone in this dark room, in order for them to try to get a good EKG of our baby boy and isolate it from Dawn’s heart beat. I sat on the outside, looking at the computers in amazement at Dawn’s courage and the technology being used to try to figure out if our boy was going to be okay. We went there four times, and the doctor there was a big part in determining when Kevin needed to be born to give him the best shot. Dawn never complained. Not once.

During this time, I had a random dream one night where I called our baby Kevin. It was an odd choice. Kind of out of the blue, and not like any of the names we had been talking about. But it stuck, and we decided that our boy was named Kevin.

Through the pregnancy, Dawn had 35 ultrasounds, 2 Amniocenteses, 5 echo’s, and 4 trips to the “chamber” in Madison. And she was taking the heart rate medicine the whole time. And she was gestational diabetic so she had to follow a strict diet. If there was ever a story of unselfish devotion to your children, this was it. She amazed me. Even with odds that were not reassuring and a pregnancy unlike anything a mother dreams of, she wanted more than anything to see her baby Kevin and give him a shot at life.

Finally, late in October, it was time to schedule a c-section. The doctor in Madison determined that Kevin’s heart rate was such that he needed to be born soon. Since Kevin was still premature, the doctors decided that steroid treatments would help his lungs. So we made yet another trip to Iowa City where we spent 3 days and Dawn underwent steroid shots and finger pricks for blood sugar checks every hour, all day and night, for 3 days, to hopefully give Kevin the extra help he needed to make his lungs strong. It was a long weekend and extremely uncomfortable for her. I think she complained once. But I forgive her for that. 😉

By November 7, 2005, Dawn had done everything she could do. It was time for Kevin to be born, and he was. We didn’t know what to really expect and we were scared to death, but he came out pink and crying. He had made it to 36 weeks through the extensive care of many doctors and nurses and because of the dedication and love of his mom. She gave him every chance he could have, and now it was up to the doctors in Iowa City to do their magic.

The day he was born, Kevin was diagnosed as having some more problems than they were able to diagnose in the womb. It was another shock, but we still thought everything would work out okay. He would just need another operation than we anticipated.

After his initial operations were done, Kevin didn’t improve as they expected him to. By November 23, day 16 of Kevin’s life, we had hit another low. The doctors came in as a group in the way that you might imagine in your bad dreams. They told us that Kevin was very sick and they didn’t expect him to make it. It was the 3rd time that we thought we had lost our little boy.

But again, hope was not lost. If there was any chance, Dawn was not going to give up. They decided to do an open-heart operation as a last effort to keep him alive, and to everyone’s surprise it was exactly what he needed. Dawn almost never left his side the whole time he was in the hospital. She was there every morning for rounds and tried to understand every measurement and medical term that was tossed around. If there was anything she could do, she would be ready. She was an active participant in his care, and I think she was one of the reasons he got better. She refused to give up on him.

From the time we finally got to bring him home, Dawn was the best mom that I could even imagine. She was on top of everything. She read everything she could read about caring for Kevin, joined discussion groups on the Internet, talked to people, read books, and did everything he needed to improve. She woke up several times a night to feed him through his NG tube, one drip at a time from a syringe, because I couldn’t get it right. She learned how to put the tube up through his nose and down into his stomach so he could be fed. She was thrown up on too many times to count but kept going through her tears of exhaustion and frustration. She made him learn to eat despite his plans to the contrary, because that’s what he needed. I saw her feed him a whole cup of yogurt, then saw him make himself throw up because he didn’t want to eat, only to see her say “oh no you don’t, we’re eating this” and proceed to clean up the vomit and feed him again. Because he needed the calories to grow. She had a keen ability to recognize if he was sick or needed something extra. I had learned over the few years that if she thought something was wrong – even if I thought she was over-reacting – that I needed to trust her instinct because she was right. And she never failed him. Not once.

Towards the end of Kevin’s life, Dawn was noticing some changes in his behavior. He seemed a little more tired, she thought. He wanted to ride in the wagon more often than pull it like before. He wanted to watch movies more often, rather than dance. She suspected something was wrong, but I tried to reassure her that it was probably nothing to worry about. Even as Kevin entered the hospital for the last time, she knew something was wrong. She called the cardiologists and had the doctors notify Iowa City. A cath was planned the following week. She knew her baby boy was having problems, and she did everything humanly possible to help him. It just wasn’t meant to be. There was nothing more she could do. On that early Friday morning when she called me at 2am from the hospital to tell me to hurry there, she had given our boy everything she could give. The doctors came into the hallway a little later to tell us the bad news. It was the fourth time in our life we had been told that we were going to lose our baby boy. But this time it was for real.

There are so many people who knew Kevin that never even knew he had a heart problem. His mommy worried her heart sick at home many days, wondering if she was doing enough, wondering if there was any chance that she wasn’t giving Kevin. But many people didn’t even realize her struggle because she was never someone who announced it to the world or made a big deal about Kevin’s heart problems. Her mission was to give Kevin the best life possible, and part of that was to let him live like a normal little boy without a care in the world. To take the burden of his health off his back and on to her own. To shift the worry off him, me, and others so that we could fully enjoy Kevin for the little boy he was. She has been an inspiration to me and a model of the kind of selfless love that a parent can have for their child. Without her and everything she did, there’s no doubt that I wouldn’t have gotten to meet my little boy and spend 2 1/2 amazing years with him. I know I can’t do her justice in a post on a blog. But hopefully those of you who know her already know what an amazing woman and mom she is, and that Kevin’s story was only possible because she gave so much of herself.