June 23rd, 1980
Today was the first day you were completely off of Decadron. Mommy was so happy and so were you! We were hoping and praying this would be the last we’d have to think about the tumor or your problems with breathing. But, deep down Mommy knew it wasn’t quite over. She knew God wasn’t done with the tumor.
July 12th, 1980
You started retracting again. They were mild ones, but it still made Mommy and Daddy very uneasy. We decided to take you to the ER again. Once again, you had to be admitted. The doctors decided to put you on prednisone, which is also a type of cortisone, but with fewer side effects.
July 14th, 1980
We got to go home. You were given prednisone every other day. There were some days that mommy had to give you some even though you weren’t supposed to get it. Mommy and Daddy kept praying that their little girl would be freed from this awful tumor, but they also knew that God’s will would be done. We loved you so much, but we knew God loved you even more. It was so hard to see you go through so much pain. It was hard to understand why God will allow it, but we had to trust He had His reasons. Maybe it was to make us stronger Christians and draw us closer to Him? Whatever His reasons were, we tried to remember to thank Him for everything He had given us. Mommy and Daddy love each other very much and we love you, too. We have a lot to be thankful for!
You are still on prednisone every other day. There are days that I still need to give it to you every day.
September 12th, 1980
You got another cold. This made you contract a lot more, so Mommy had to give you prednisone six days in a row.
September 21st, 1980
Your cold was almost gone and you didn’t have to go to the hospital this time! Praise God that the prednisone is helping you!
As the days went on, you weren’t getting any better. Mommy had to keep giving you more and more prednisone, which wasn’t good for you, but it at least helped you breathe. We decided to change doctors. The new doctor examined you twice and decided to schedule another bronchoscopy. You were referred to another doctor for that procedure. This doctor decided to see what was going on. If there weren’t any changes with the tumor, he would schedule laser surgery. A surgery was scheduled for Nov. 11th, 1980, to make sure something was scheduled in case nothing had changed. We had to wait three weeks before the bronchoscopy could take place. It was a really long three weeks!
November 10th, 1980
Today was bronchoscopy day. You were admitted to one facility and then afterwards, you would be transferred to another facility. The bronchoscopy showed that there was no change with the tumor. Tomorrow you would have surgery.
You shared the first ward with another baby and a six year-old. Because of your breathing and crying, you later got transferred to a private room, so you wouldn’t disturb the other children. That night you didn’t sleep well. You were having a really hard time breathing. Mommy stayed overnight with you and slept on a cot right next to you.
November 11th, 1980
Morning came and it was your big day for your laser surgery. We were so nervous and just wanted it all to end! At 9:45 a.m., they came to get your for surgery. It was such a horrible feeling to see our baby being wheeled down the hall. You were looking all over for us and screaming. Mommy wanted to grab you and run away!
We waited and waited… Two hours went by, then three hours. We started getting nervous because there was still no word about you. Finally at 1:00, we got word that the surgery went well. They had done another bronchoscopy and confirmed for a second time that the tumor hadn’t shrunk at all from the cortisone and prednisone. So, they lasered or burned your tumor. Afterwards, they put in a tracheotomy, which was a hole in your throat, with a breathing tube through there. You would be breathing out of that for quite a while.
After talking to the doctor, we had to wait until you came out of recovery. We were told it would be about an hour. An hour and a half had gone by and we started getting worried. The nurses called up to recovery. Unfortunately, they told us you needed to stay for another hour. That was so hard to hear because it seemed like an eternity since we had seen you wheeled away. We wanted our baby back so bad!
Finally at three or four o’clock, we were told you were being taken to another facility in an ambulance. We were supposed to meet you there. When we got to the other facility, you weren’t there! After an hour of waiting, we were so scared and worried. We thought something had happened to you. Finally we were told you were upstairs already in your room. Somehow they had taken you up there, without letting us know. We weren’t very happy!
Early that evening, we finally got to see you. You were in your crib just crying away, without any sound. Mommy couldn’t stand it and burst out crying. Mommy was so upset she had to leave the room for a little bit. While she was out, she wondered why God allowed us to suffer so much on Earth. Mommy reasoned with herself that at least you weren’t as bad off as some of the others at the hospital. She thanked God that at least there was something the doctors could do for you. It was still really hard, though.
Again, we weren’t able to hold you. You looked so scared! Mommy wanted to hold you so badly and try to make things a little easier for you. All Mommy could think about is how hard it probably was for you to understand why we weren’t holding you.
We stayed with you until the nurses made us leave. It was so hard to leave you that night! Going home to an empty crib made the house seem so quiet and lonesome.
November 12th, 1980
Mommy was there right at 6 a.m. I was finally able to hold you. Mommy held you the whole day – she didn’t put you down or leave to eat! Mommy wanted to let you know that she was going to be there as long as she could.
Throughout the day, the nurses had to come in and suction out your throat. They had to put a long tube down your trach, which would suction out the secretions of your throat. This helped you breathe better. You didn’t like this at all! You got to the point that you would immediately start crying whenever you saw the nurses.
November 16th, 1980
The doctors changed your trach down to size 0. This was a process to help wean you from breathing through your trach. The plan was to keep moving the trach size down until it finally came out. You did very well on size 0 and didn’t have trouble breathing.
November 17th, 1980
The doctors moved your trach down to size 00. They wanted to leave it at this size for a day or two before putting a cork on the trach. This cork would make you breathe on your own.
John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
Philippians 4:6 "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."