Story, Part 1

When it was time for her first checkup I didn’t make the appointment like I should have. A little later one of my friends in the office called to remind me to bring her in. The doctor said she was healthy and gave her the immunizations she needed. He said she was healthy at every appointment even when I asked if something was wrong with her. Sometimes her breathing was different. I felt like something was wrong but I had no idea what it could be. Everyone treated me like I was a hyper mother and told me nothing was wrong. Then summer came and I couldn’t understand why people didn’t get concerned about their babies in the heat. We didn’t have air conditioning and when it was hot she would just lie there and not move. I found that if I would stand there and keep her wet all over by sponging her with a wet washcloth she would move and act normal. Still, everyone told me I was being over concerned. In other words, they thought I was a hysterical mother! There was no doubt in my mind that something was wrong with her. She laid in her bed or playpen and kicked and kicked and kicked. She moved her legs like someone does that is riding a bike. She would scream a lot, also. It seemed to make her feel good, though. She didn’t appear in pain or anything like that. I used to joke that if someone would walk by the house they might think I was abusing her she screamed so much. Donella didn’t tell me this at the time but later she told me, “I remember distinctly the screaming cry that Theresa had when you would change her diapers when she first came home from the hospital.. It was like she was hurting or something. There was not any visible sign of anything wrong, but the cry was of terror or pain.”

We moved to Granger when Theresa was nine months old. The doctor Theresa had been seeing told me that when Theresa was born she had a little heart murmur and he didn’t tell me about it because it wasn’t serious and he didn’t want to concern me. It hadn’t gone away, though, and I should see a pediatrician in Des Moines when we were moved. I made the appointment for three weeks later. There was no urgency – according to the doctor I had been taking her to.

I took her to the doctor and he was completely surprised and upset. “Haven’t you had her to a heart specialist? She has this huge heart murmur and should be seeing a heart specialist.”

I looked at him in disbelief and explained what I had been told. He didn’t seem to know what to say but finally said, “She needs to see a heart specialist as soon as possible. She’s made it through the first nine months of her life which are the most critical, but there is something major wrong and she needs to see a heart specialist.”

She wasn’t in any distress so he agreed to have the appointment in three days. They did all the tests then we sat in the waiting room for hours and hours. People went in then left. Other people came into the office, saw the doctor then left. Theresa was the last one called in. I asked to use the phone in the middle of the afternoon to call Mom and Dad. I couldn’t call Jack because he was working and we didn’t have cell phones then. They were worried that I might have been in an accident or something. I explained that I was still waiting and that I would be home as soon as the appointment was over.

Theresa at 9 months

Eric at 6 months

When Theresa’s name was finally called the doctor gave me the news – but I couldn’t comprehend any of it. All I could understand was that Theresa had serious heart problems. He made an appointment for her in another month and sent us home.

I tried to explain everything when I got home but I didn’t understand it couldn’t tell them what was wrong other than she had serious heart problems and it was something about her valves and an artery. Needless to say, the next appointment I had someone with me. The doctor drew things on a drawing of a heart and I understood a little more.

Theresa didn’t eat much but she kept growing and doing well. She didn’t walk early but many babies walk a little later. She was definitely an intelligent baby, though. When she was around one the doctor thought she might be doing a little worse and wanted to do a heart catherization (the forerunner of the angiogram). He explained that they would go in through a vein to get a better look at her heart. We went to the University of Iowa Hospitals to have it done. Mom and Dad went to Iowa City to be with us also. The older children stayed with friends for three days while Theresa was in the hospital. They found that she had several things wrong with her heart but they thought they knew what they were and they wanted to watch her longer. They put her on lime-flavored medicine that she really liked. Within a week of starting the medicine she became stronger and she started walking.

When Theresa was still in the hospital Mom walked into the hospital room while the surgeon was checking her. He had a very good way with her that most people didn’t have. Mom told me about what she heard him say. “Don’t cry, Theresa. You are just a very sweet, little girl with a very big problem.” She stopped crying while he checked her.

Every time I took Theresa to the heart specialist the report was worse and he needed to increase her medicine. She ate less and less, became weaker and started looking worse. She was starting to catch the flu all the time and I spent a lot of time in the doctor’s office and taking care of her. In fact, I wondered if she would live or die but the doctor hadn’t said anything about that. He hadn’t said anything about her living and he hadn’t said anything about her dying. I didn’t ask, either. I didn’t want to know the answer because I could see that she was getting worse.

That’s when I found out that I was pregnant. We didn’t have the ways to tell that they have now so you needed to be 3-4 months along before they could definitely tell if you were pregnant. I was completely shocked because I was supposed to have a hysterectomy and the doctor didn’t think it was possible for me to become pregnant. But I was pregnant. I love babies but I didn’t know how I could take care of another baby with Theresa’s health the way it was. That took so much time.

After I got over the shock I was excited about having another little baby. I was afraid that it would have heart problems too and talking to the doctor about it didn’t help any. He said that before I had Theresa the odds were something like 1 in a million or billion that Theresa would have had heart problems. Since she was born with major heart problems the odds were 1 in 250 that this baby would have heart problems. I tried not to think about that during the pregnancy. It wouldn’t help to worry and it might make things worse.

At the end of March, 2 years after Theresa was born, Eric was born. I was in labor a total of six hours with Eric. He was a little bigger. The doctor’s said there was no murmur and sent us home. A month later I heard the news I had dreaded. He had a slight murmur. The doctor explained that it didn’t mean he had heart problems but most of the time it would go away on its own. Of course I called Theresa’s heart specialist and he saw Eric the next day. He did a thorough exam and finally told us the good news. Eric had a functional heart murmur and there was nothing wrong. He explained that when the heart grows sometimes different parts of it grow at different rates and it causes a functional heart murmur. It will go away with time. That was such a relief but I couldn’t relax about it. I was sure the heart specialist was correct but I just couldn’t relax about Eric’s heart. I had been told that nothing was wrong with Theresa’s heart so long only to find that there was something seriously wrong. The doctor listened to Eric’s heart every time Theresa went to see him and after about a year I wasn’t worried about his heart any longer.

Eric had other problems, though. He was starving all the time and when he was one week old he started snoring like an old person snores. I finally added baby food to his diet - then real food. All the time I talked to the doctor about it to make sure he was handling the various foods I introduced all right. By the time Eric was nine months old he was on complete table foods and milk.