Story, Part 2

With Theresa being sick a lot and Eric being sick a lot the doctor’s office became my second home. The other kids were old enough to take care of things at home which was a good thing since I was at the doctor’s office an average of 3-4 complete days a week. I learned that whenever there is a serious health problem that goes on for years the marriage usually ends in divorce. I hoped that wouldn’t happen. I don’t think our divorce was because of Theresa’s heart problems or the children from his first marriage. There were other serious problems in our marriage that I won’t go into that had a great bearing on our marriage breaking up. One thing I will say is that when a mother has to decide whether to take care of a child in order to keep that child from dying or to give her husband attention, it has to be the child. After a while the husband realizes he is neglected but he cares for the child and doesn’t want it any other way. I believe that if the husband and wife are both aware of this they might be able to do something to overcome the problems it causes between them. Our marriage just had too many other things to combat.

Theresa continued to eat less and grow less while Eric continued to eat more and grow and gain weight more. I was in the doctor’s office enough so that they were watching both go the extreme. I asked about allergies but at that time doctors didn’t do anything for someone under two unless it was extreme. They normally didn’t do any allergy testing before two and they didn’t think Eric’s problems were severe. Finally the doctor looked at me, laughed and wished me luck with what he was going to tell me to do. “You need to give Theresa cookies and cake instead of peas for a treat. Eric shouldn’t have pizza or anything like that. Theresa needs to gain weight and Eric needs to lose weight.” Shaking his head he finished, “Good luck.”

Theresa at 2 years
when she weighed
less than others her
age and she was
shorter than normal

Eric at 2 years
when he weighed
69 pounds

I knew I couldn’t give Theresa cookies and cake and not give Eric cookies and cake so I did the next best thing. I bought sugar free stuff for Eric and made him feel special because he had his own candy and cookies. Theresa wanted them also because they were special so I let her have a little piece of the sugar free things but I gave her the things with sugar also. It didn’t do a lot of good, though, because Eric was hungry all the time and his stomach would hurt because he was hungry. I couldn’t torture him by making him go without food so I kept feeding him.

Theresa kept going downhill and the doctor had to increase her heart medicine several times. It got to the point that when I walked into her bedroom while she was asleep I could heart her heartbeat. Finally, when she was 3-1/2, the doctor thought there might be a little fluid buildup in her lungs. He wanted to do another heart catherization. He called the University of Iowa Hospitals and made the appointment for September – six weeks away.

The next six weeks were absolutely horrible. Time seemed to come to a complete stop and I couldn’t get anything done. Donella and Doreen, my sisters, and their families were going to take care of Eric and Pat while Theresa was in the hospital. Debbie and Mary were going to stay with friends. Mom and Dad were still in Canada but would call after the test.

After the heart catherization the doctor had some very bad news and they wouldn’t let Theresa out of the hospital. She had several things wrong and the pressure in her heart was so great that her heart could burst at any time. They wanted to do open heart surgery but since she was doing well physically they could wait a few days until she had recovered from the catherization. They explained that a person’s body always reacted to a catherization like it did for any surgery. Theresa would recover from open heart surgery better if they would wait a few days.

They performed surgery on Friday afternoon. Donella and Sheri, Jack’s sister, came to be with us while we waited for the surgery to be finished. Those five hours were even longer than the six weeks waiting to go to the hospital. When we talked to the doctor afterwards he was physically shaking. He sat there in that tiny little room they talk to people in and said, “Things couldn’t be worse.” What a bomb to drop. My mind went blank. He explained things but I didn’t understand a word he said but I did know that he did not say Theresa was going to die. He said they hoped to learn what they needed to know by the time she was about eight to be able to fix her heart. What they did was buy time with this surgery. After he explained it a couple more times I started to understand. He said that they did repair work on two valves and closed to holes. They needed to replace both valves in the left side of the heart and part of the aortic artery, but medical science didn’t have the technology at that time. That’s what he hoped they would learn by the time she needed it. The incision was in her chest and they had gone through the sternum. That surgery had much less pain than other surgeries because they didn’t cut many muscles.

When I walked into intensive care to be with her I stopped and could hardly force myself to walk in. She looked so awful and there were so many tubes coming out of her body. They told me about it but it didn’t sound anything like what it really was. With everything in me that I could muster I walked in and that feeling left when she looked at me. All I felt was love for my precious little darling girl.

She improved and by Monday morning they had taken all the tubes out and moved her to a normal room. She fell asleep on her stomach right on top of the stitches. I let her sleep that way a couple of minutes then I couldn’t stand it any longer. I turned her over.

While Theresa was in the hospital for about two weeks she became a favorite of the nurses and she interacted with all the other children. It didn’t bother her that some of the children had paper cups on their head where tubes were or that some were going to die from cancer. She saw them as kids instead of a problem. They all had fun playing with each other.

One time a nurse came in with students she was training. She wanted to take Theresa’s blood pressure with a new machine, but she couldn’t remember how it worked. Finally Theresa told her how to do it. She turned red and joked about a 3-1/2 year old teaching the teacher how to work the blood pressure machine. She came in a few more times and each time she played the game of having Theresa show her how to work the machine.

When we went home I think I felt worse than Theresa. Before her surgery I asked her if it hurt and she said it didn’t. After the surgery she said, “It doesn’t hurt any more.” She had lived with pain so long that she didn’t know what it was like to not have it hurt. I didn’t realize she was hurting. She did seem to need to push herself a little to do things before she had surgery, but she didn’t act like she hurt.

Theresa started improving and growing. When she had surgery she weighed 28 pounds, much less than Eric. I wondered if she would gain enough to catch up with him or whether she would grow taller than him. They would stay the same height for several years.

I talked to the doctor about Eric’s being so heavy and he wanted to run a battery of tests to see if anything was wrong with him. Eric was 2 years old and weighed 69 pounds! He had a very big bone structure, was extremely tall for his age and was very fat. The tests showed that there was nothing wrong. That translated into Eric simply ate too much. I was at a loss as to how to help Eric. I felt that if I kept food from him when he was hungry and everyone else was eating it would be torture on the same level as Hitler. I just couldn’t do that. I decided I would have to do some research to find something that would help him.

A couple weeks later Eric asked me if I noticed anything. I didn’t know what he was talking about so I asked him. “I’ve been dieting. Look at my pants. They’re too big.” He was right - his pants were too big. Of course I gave him a big hug and told him how proud I was of him. I also told everyone I knew about it when he was with me. I wanted him to know how proud I was. People even asked him what his secret was because they couldn’t lose weight. He told them, “I don’t eat as much.” As I thought about it I did remember offering him food and him saying no. He said the doctors impressed him so much that he decided to go on a diet, but that he was always hungry then.

Eric also had bad colds and pneumonia throughout the winter but the doctor didn’t think there was anything seriously wrong with him. As with Theresa, I knew there was something wrong. I finally decided that I would call the doctor whenever Eric had some strange problem. Luckily the doctors knew me by then and didn’t get upset. In April they finally referred me to an ear, nose and throat specialist where the problem was found. To my surprise Eric had a fluid buildup in his ears and he couldn’t hear anything! He also had very enlarged adenoids. They scheduled surgery to put tubes in his ears and remove his adenoids.

During that two-week period I tried various things to make sure he couldn’t hear. At two he talked and responded when we talked to him so I wasn’t sure. I talked to him with his back turned and he didn’t answer. I even yelled and he didn’t answer. I stomped on the floor and he turned around. I then “talked” to him by moving my lips without making a sound and he answered my questions! There was no doubt that he had lost his hearing. He had learned to talk when he could hear and then he learned to read lips as his hearing gradually left him.

When they sent him home they put him on allergy medicines. Eric didn’t suffer any permanent hearing loss. Another thing happened that surprised me. He wasn’t hungry all the time. I kept doing what the doctor told me to do, but I read also. Somewhere I read that allergies can cause a person to be hungry. I watched Eric and found that he wasn’t as hungry when he was taking allergy medicine. I finally realized that his hunger was caused by allergies and started looking for the cause of his allergies. I found several things that bothered him but the most surprising was the difference between chocolate and cocoa. If he ate something with chocolate in it he had trouble. If he ate something with cocoa in it he wasn’t bothered at all.

Theresa and Eric’s health continued to improve and today they are living normal lives. Theresa was born with curly hair but after her surgery it went straight. The curl finally came back in her teen years but it isn't quite as curly as it was when she was little. Theresa doesn’t have symptoms of heart problems even though her heart is the same. The doctor’s are a little skeptical but that’s okay. She is living a normal married life with no symptoms of heart problems. If Eric takes over the counter allergy medicines he doesn’t have trouble with allergies and he doesn't have the hunger he did when he was little. He is quite busy with his three children, one girl and then three years later twins, a girl and a boy.

Theresa when she
was 7 or 8

Eric when he
was 5 or 6

When I was taking care of Mom and Dad an echocardiogram was done on Dad to see if they could find the cause of his strokes. They didn’t find the cause of his strokes but they did find that he had some of the same defects that Theresa has. The doctor said that Dad had had them for years and they probably wouldn’t cause any problems, but that he should take antibiotics before he had dental work done.