The first entries go back shortly after my birth. Only 1 ½ months into my life, my parents’ lives were catapulted into uncertainty, fear, anxiety – the unknown, which many times is the darkest of all. Read carefully, though, because as with all dark times, it was followed by a beautiful sunrise. I have the privileges of sharing entries from my mom’s journal from April 1980-July 1981:
“The first time you went into the hospital was a Saturday, April 19th, 1980. You seemed to have a cold that you caught a few days early. You were awfully stuffed up it seemed. The day before which was Friday, we were over to Grandma’s. She said she thought I had better take you to the ER, which upset me very much. I knew it was hard for you to breathe, but I didn’t think it was that serious. I rushed home and asked Daddy. He said maybe we should wait to see how you would do.
All that night you were awake. Mommy held you to her chest and she sat up so that you could breathe easier. The next day you seemed to breathe easier but you were still stuffed up. So I decided to call the doctor. He said to try suctioning it out with the blue suction cup, which I did, and then to try a vaporizer. I had to run up town to buy a vaporizer. But none of that helped. By 8:00 that night, your chest was retracting, which means your chest was caving in when you breathed. So then I knew I needed to get you to the emergency room. Daddy got all upset and worried. He brought you upstairs and showed you to your other grandparents (we were living down in the basement with them at the time). The said we’d better hurry and get you to the ER. Everyone was very worried. So we took you to the hospital. Daddy drove about 90 miles an hour to get you there. When we got there, they immediately got you into a room and the doctor came to check you over. They gave you a shot to see if that would open up your lungs. It didn’t do anything so after a lot of watching and listening to your chest, they decided to keep you overnight. This was the beginning of our long journey into a nightmare of fear.
We were taken to the nursery on the 6th floor at St. Mary’s/Mayo Clinic. After the nurse had asked us a lot of questions and I had fed you for the night, Daddy and I had to leave. They wouldn’t let us stay. It was 11:30 p.m. You were sleeping when we left. It was so hard to leave! Daddy and I had a pretty restless night.
April 20th, 1980
The next day I was at the hospital by 6 a.m. to feed you. You couldn’t eat very well since it was still hard for you to breathe. When the crew of doctors came around, they were going to let you go home, but I asked if we could stay another day, because you still weren’t breathing very well. So they decided to let you stay. Thank God we did!
By 11:00 that morning, it was very difficult for you to breathe again. You were gasping and fighting for every breath you took. They decided to put you into intensive care so that you could be watched more closely. All day I sat by your side watching you fight for every breath. You would look up at me with so much fear in your eyes. I felt so terrible as there was not much I could do for you but sit and rock and cuddle you and try to somewhat comfort you.
At 6:00 p.m. I left that night to go and get Daddy. When I left, I had this awful feeling something terrible was about to happen. When we got back, the doctor told us you couldn’t make it on your own. They would have to intubate you (put a tube threw your mouth and down to your lungs). This was to help you breath. They put an IV in your little head and a tube down your nose. You were given oxygen. It was very hard for us when we came in and saw you with all those tubes. It was harder for Daddy, though, since he wasn’t used to that. Mommy had worked in the hospital as a nurse, so it wasn’t as hard. But, it still tore at our hearts to see you like that. When we left that night, we were very upset. Daddy was crying. Mommy had had her share of crying throughout the day, too.
April 21st – 23rd, 1980
Every day I came to the hospital by 6:00 a.m. and sat by your side until 9:00 p.m. You couldn’t breastfeed because of the tube so mommy would use the breastpump to keep her milk supply up.
You had the tube put in on April 20th and got it taken out on the 23rd. You had to wait 12 hours before you could eat anything. You were so hungry! All we could do was hold you and rock you. You would cry and cry. That was a long night!
April 24th, 1980
Finally morning came and I was able to feed you! You really ate! When the doctors came around, you were breathing fine on your own and had kept your food down, so they said we could go home. Hurray! Mommy was super excited and Daddy would be glad to have us back home.
The doctors thought you had just had a bad cold and then when they put the tracheotomy in, your throat swelled. Since the swelling had gone down and you were breathing better, they sent us home. All was well and we were on our way home! We hoped everything was over! Everything was great until about a week and a half later…
May 12th, 1980
At supper time I saw you were retracting again. I told Daddy we’d better take you in again. Daddy had to milk so I brought your aunt. We rushed off to the ER again. Luckily when we got there, we saw the same doctor who had examined you the first time. He decided due to what happened last time, they had better just keep you overnight. This was a Monday. We were admitted to the nursery again.
May 13th, 1980
You started getting worse again…just like before. We stayed another night.
May 14th, 1980
It was Wednesday already. You started retracting really bad, so they moved you to intensive care.
May 15th, 1980
You weren’t doing very well, so they decided to do an emergency bronchoscopy (put a tube with a camera down your throat to see what was wrong). They found a tumor – a strawberry birthmark tumor in your windpipe! Mommy didn’t want to admit it, but all along she kept thinking to herself that she thought you had a tumor. Mommy and Daddy shed a lot of tears! The doctors had to put another tube in to help you breathe. We’d have to wait until the swelling went down.
When you came back from the operating room, you had the tube down your throat again and you looked so miserable. You had other tubes all over, so they had to tie your hands and feet down so you wouldn’t move or rip them out. Whenever you would cry, no sound would come out. Mommy couldn’t hold or hug you or try to comfort you, because you would want to eat, which would make you cry even more. All you did was cry and cry, without any sound coming out – it was so hard seeing you like that!
May 17th, 1980
It was Saturday. You had to go into isolation, which means anyone who came into the room had to wear a gown and take it off before they left. This was to prevent germs to anyone else in the hospital. You had diarrhea really bad, so they thought you had a virus, which might spread to other children. You bottom was so sore and red. We had to put lights on it to try to dry the soreness away. Mommy sat by your side all day. Daddy wasn’t able to come in much because he had to plant corn on the farm. The nurses weren’t in all that much. It was just the two of us, which made for long days.
May 18th, 1980
Your tube was supposed to stay in until the 19th, but this morning you decided you had had enough. While the nurses were weighing you, you pulled it out! When mommy came that morning, she was surprised to see you without your tube in. The doctors decided to leave it out and see how you would do without it. Daddy came and we went to church. When we came back and you were retracting very violently. The doctor said they would have to put the tube back in again. It was at this point that Mommy knew she needed to give all of her fears and worries over to God. So Mommy prayed right then and there. She prayed to God and told Him she loved you very much, but she knew He loved you even more. And whatever His will was, she would accept it. Mommy still asked that He would make you better. After praying, mommy’s fears left her. Even though things were still very scary, Mommy had inner peace within her. God was in control no matter what!
You gradually kept getting worse and worse. At 1:00, the doctors said they’d have to put the tube back in. Mommy kept telling Daddy you were going to be o.k., because God was taking care of you. Mommy also told the doctors she thought you were going to get better. Slowly, you started to breathe easier. By 2:00, you were almost breathing normal! All Mommy could do was keep thanking God! Throughout the rest of the day, you were fine. You were also very hungry, which was good. Unfortunately, Mommy couldn’t feed you until the next day due to all of the tubes and swelling.
May 19th, 1980
Mommy was there bright and early – she wanted to nurse you so badly! Mommy couldn’t feed you until the doctor saw you again. He told mommy to call him when she got there, no matter how early it was. Finally you were able to nurse – you were so hungry since you hadn’t eaten in 5 days! Afterwards you felt and looked so much better! You were even smiling again and mommy and daddy, which made us happy.
May 21st, 1980
We were able to go home again! This time, though, you went home on medication. You were on Decadron, which is a type of cortisone. The doctors hoped this would shrink the tumor.
We made it home, but the weeks were challenging. The first week home you had to take the Decadron every 6 hours. The second week went down to every 8 hours. The third week you took it every 12 hours. Finally, every day after that, you took the Decadron every other day for a week. Then you didn’t have to take it anymore. During that month, all you did was cry and cry because the medicine made you so hungry. All you wanted to do was eat, which was a side-effect of the cortisone. Mommy and Daddy felt so bad and didn’t want to take you anywhere because all you did was cry. The cortisone made you super chubby – that’s where you got your nickname, Chubbers.
By the fourth week, the doctors started tapering you off the cortisone; otherwise you’d go into withdrawal. You were almost back to your old self. You were laughing and cooing just like other babies would do. What a joy to Mommy and Daddy!
Psalm 139:23 “Search me, God, and know my heart; test me and know my anxious thoughts.”