The last 2 weeks of 1991

We woke up at 6 am on Wednesday, December 18, 1991 ready to go to the doctor. I had to be there at 7. I, again, could not step into the shower, so D had to help me in and out as well as getting dressed.


We left at 6:40 to go pick up a childhood friend who lived her. SN and I met in the second grade. She was also an OB nurse. Having someone like that in your labor room is highly recommended!

We got to the hospital, they said I was already having contractions but I was not aware of them. They started the pitocin as planned. My fears intensified. What was going to happen to me in labor? I was so tired would I be able to do this? I needed help getting dressed and brushing my teeth! How was a baby going to be pushed out. I kept my fears to myself because it was ‘only chronic fatigue syndrome’.

As the labor started something odd happened. My vision cleared up, my breathing deepened, my ability to move positions in the bed, get up to go to the bathroom improved as the minutes went by. I started to become ecstatic. Whatever happened in the first labor was going away with the second. My journey into inability was over!

Around 11, D became restless and decided to go home to clean house. Leaving me in labor with SN. I was less than amused! But, SN and I had a blast. She read to me, she wiped my forehead, offered me ice chips .. it was strange, she never offered me something that I did not need when I needed it. Her instincts for what was needed then were right on. I’m guessing the combination of a 20 year friendship and her training as an OB nurse was what made her so perfect.

Things started to get intense and we called D to tell him to get up there. He walked in and was white as a ghost. I asked him what was wrong and he said that he’d gone to throw the phone books away and not let go. The trashcans were beside our porch. The porch railing was 8 feet from the ground. He, and his 98 pound frame, leaned over to throw the 3 phone books away and just didn’t let go. Gravity took over and pulled him head first into the trashcan. He caught his neck/shoulder on the side of the medal trashcan.

I got a clear visual of what happened and busted up laughing. (As did SN) He was obviously in a lot of pain, but I was somewhat miffed that he’d left me in labor to begin with so my compassion was non existent. (18 years later it still is!)

His sister came to see us. She worked in the hospital. If she’d come, that’d have been fine, but it wasn’t just her. I’m IN labor with my legs up and 4 of her co workers come walking in. D was sitting on the couch between contractions, but during a contraction he’d get up to hold my hand. I had 3 contractions while she was there and she stood between me and D the whole time insisting (during a contraction) that he get down to the ER. I became angry. He was not leaving me again. Another contraction started, I started to whine for D to come and she turned around and yelled at me “Would you please let me finish my conversation with my injured brother?”

The nurse made them leave at that point. Told D that he might need to go to the ER when we were done, but for now, regardless of what he was going through, I needed him.

The weakness was now a distant memory. The contractions didn’t matter because I had all the strength I’d had before I got ill. It was the first time I’d felt normal in 2 years 2 months and 4 days!!

The nurse gets the doctor into the room and he said that it was time. 20 minutes later B made his way into the world. 8:11 PM. He had a large head, and an incredibly weak cry. He could not open his eyes and he seemed lethargic. His apgar scores were less than comfortable.

After they let me hold him, they wanted to take him to the NICU to see what was wrong. While they took him, I got up to go to the bathroom. I was thrilled with these legs working so well. While I was in the bathroom my sister and brother in law came by. I came out of the bathroom said “hi!” and suddenly my entire body turned to mush. My sister yelled “she’s not ok!” and I collapsed to the floor. The weakness returned with a vengeance. I couldn’t catch my breath. The nurse and my brother in law helped me to my bed and put some oxygen on me.

A short time later I was transferred to my room. They’d brought me back B. Unsure of what was going on, but nothing seemed urgent.

Our Family doc came into see him. He started to exam B and his eyes filled with tears. He told us that something wasn’t right and we’d find out what it was. He said to let him worry about it, our job was to love this child.

The next morning a doctor from the clinic came in. B was not ready to be discharged, but she was determined to discharge me, less than 11 hours after he’d been born. The nurse flat out refused to fill out the discharge paper work and demanded an attending come and look at me. She advocated elegantly for me.

The doctor that tried to discharge me was told that she was off the case and another doctor assigned. She came storming into my room saying I had no right to get her into trouble. All I had was chronic fatigue syndrome and I needed to stop making up symptoms. She was yelling loudly enough that the family doctor heard her from the nurses station and came in to remove her. He apologized to me, so did the attending and the nurses and an administrator from the hospital.

My weakness was as bad as ever. I was unable to pick up my son and nursing was a nightmare. I had to call the nurse back into the room in order to change sides. I was unable to maneuver him from one breast to another. I was unable to dress or change him. I was also unable to get the spoon from my plate to my mouth. I was embarrassed to tell anyone about this.

It was finals week and my husband had to travel to his school daily 90 minutes away to take his finals. When he got back into town, I let him feed me.

We were discharged Saturday morning. We did not know what the future would hold.

Tuesday, we got up. Nothing had improved. A neighbor came over and we opened the door for her. The light hit B and she gasped. He was YELLOW! Her son had been jaundiced and it alarmed her. I called the doctor and told the receptionist that he was yellow, dark yellow all over, palms, feet and eyes. She told the doctor that “Mom thinks baby might be a little jaundiced” It was Christmas eve and they sent us to hospital lab to draw labs. The lab tech called her supervisor because she’d never done an outpatient lab on a baby *this* yellow. They drew the labs and asked for them stat ..but they did not get to the doctor before he left for Christmas.

Christmas day we woke up and before we could even register we were awake. S was crying. Another 105 fever .. off to the ER before breakfast, before gifts. Another ear infection.

The next day we got both boys ready to go see the doctor. When he’d gotten the ER report on S and realized we were coming in, they called and asked for both of them.

We get there, the nurse seemed a bit nervous after seeing B. She asked how things were going. I was unsure, B had a rash over his entire body. I’d stopped breast feeding on Monday because every time he started to nurse, it was like this wave came over me, increasing my weakness. It would last about 2 hours, just in time for nursing. The jaundice concerned me a bit.

The doctor came in and was visibly shaken. B’s bilirubin was off the charts. Dangerous levels. He told me that I should have explained that his eyes were effected and that he was DARK yellow. I told him my exact words to the receptionist. He wasn’t thrilled. He said that had he known, he’d admitted B for light therapy.

They re drew the bilirubin and we waited. It was down to an 18 so he felt it was ok for us to go home. But with his lack of crying, weight loss (instead of gaining to birth weight of 9 lbs 8 oz, he was now lbs. 1 oz and fitting in the newborn clothes that had been too small at birth) he wanted to see him again. We talked about his projectile vomiting and the doctor picked him up and B decided to show him what I’d meant. The doctor told B that he’d believed me, trusted me and did not need the example, but thanks anyway.

We brought him back the next Tuesday, New Years Eve, and the doctor looked very sad. He said that B needed to go into the hospital, his weight was down again, to 7 lbs 12 oz. He admitted him under failure to thrive”

As we left his office for the hospital he took B from me, and looked him right in the eye and said “please tell me you’re not going to be sickly like your brother.”