Continuing on ...

We brought S home on the 16th. My sister brought over homemade pizza. I was so tired that chewing had become an issue. I learned that if I used my hand to push up my chin, I could accomplish the chewing. My sister said something about it being a relief to see me eating.


The next morning D made me scrambled eggs. I could not chew them. Something was terribly wrong with my jaw. I couldn’t figure it out.

That night, I choked on a cup of coffee, I found myself gasping for air and choking at the same time. I blamed it on inhaling the coffee (which is, in effect what happened)

Over the next several days I found that the 2.5 mile 2x’s per day walk was impossible. I did good to get to the end of the block. The third time I tried, I fell trying to turn the corner. My husband helped me back to the house … and we decided to talk to the doctor when we took S back in for his 1 week check up.

When I spoke with him about my fatigue, he seemed *very* concerned, yet his words did not match the look on his face. He told me that it was normal. That often the fatigue is so surprising, it’s unexplainable. I’d be fine in a few weeks when the hormones straightened out and sleep patterns of my child became more normal.

S passed his first week well check up with flying colors. It was the last good news check up for 13 years.

The following week, I continued to have trouble chewing, watched TV with my head tilted backwards.

When S turned 2 weeks old, our world flipped upside down and backwards …someone tried to pull us through a keyhole backwards. He woke up at 6 am and started to fuss. By 6 pm he’d not even dozed off for a nap, but had continued to cry. My gut said “this is not colic”. He would not nurse, holding him did not help, laying him down did not help . The swing he loved did not help. Nothing helped. By 3 am that Sunday I was worn to a frazzle. He’d not eaten since his middle of the night feeding the night before and hadn’t even dozed off for a few minutes.

Sunday was a repeat … by noon, I thought he was HOT. I took his temp, it wasn’t too bad, it was only 100.5. No one had told me that under 6 week old babies should not have a fever. I sent Don to the store to get Tylenol. I didn’t like the idea of giving my child Tylenol for a mere 100.5 ...but I needed to get him some kind of comfort. Needed to give my body a break. Needed something else.

He brought the Tylenol home and there was no instruction for a newborn or a baby that small. I called the pharmacist who refused to give me the dose insisting that I call the doctor. It never ever occurred to call the doctor during none business hours or to go to the Emergency Room.

So, Sunday night was a repeat of Saturday night. Crying, restless misery …by both of us. Fear was welling up and I was feeling like a failure as a mother. I could not even comfort my son, much less help him sleep or feed him. What kind of mother can’t feed her child?

Monday morning D got up to go to school. He left, looking haggard. I waited for the doctor’s office to open and called. I was surprised when they put me straight on with the doctor. (never knew how rare that was, it was a good thing, cause if I had, I’d likely had gone into shock!)

He was alarmed. Said to get him to the hospital NOW. I said but his fever is barely a fever! He explained he should not have a fever at all.

I called D at school and security got him out of class. When we got to the hospital, the doctor was waiting. He took us to admitting and talked to us, examining S in the admitting waiting room. He was ordering tests while we waited. They came and got him and took him straight to x-ray. Lab tech came to get blood from him in x-ray and we were taken to the pediatric floor from there.

The doctor was again waiting. S had pneumonia, a strep infection and both ears were infected. They went to take his blood pressure and I fainted. (it would be YEARS before I was allowed to stay with a child for a procedure after that.)

S stayed in the hospital until Friday evening. We took him home with instructions, antibiotics, decongestant and guifenisin. We brought him home with instructions to call, and not wait for the office to open if certain events happened.

Sunday, his fever spiked, he started to cry and stopped eating again. This time, within an hour I called the doctor who answered his call. He told us to meet him at the hospital. This time they did an Upper GI and a barium swallow.

He came back in with a wedge in his hand. S had severe reflux which was likely the cause of his pneumonia. He stayed till the relapse cleared and that Friday we were sent home with a wedge, more antibiotics and reglan.

During all this time, I became increasingly tired. A nurse had complained at one point to the doctor that she was afraid I’d drop my son because I was so fatigued three was an obvious strength issue.

My doctor, a family doctor, responsible for all of us, not just S, decided that Wednesday to ban me from the room for 24 hours. He couldn’t force me to go home, but he could keep me out of the room. He talked to D about making me go home and rest. My sister came up and stayed while I went home. I was sent home with a breast pump and D took the bottles back and forth.

24 hours from the minute that I’d been banned, I was back in the room. I’d tried to put on my make up that morning, and curl my bangs but found my arms wouldn’t stay up long enough.

We got S home and things seemed ok … for about 10 days. He’d spent his 3 week birthday in the hospital, the 4th week seemed ok. That Monday, he woke up with his nose so congested and cranky … we called the doctor again. This time he sent us for a blood test and sputum culture instead of immediate admit. In the hospital lab, my eyes suddenly became so badly weakened that I could not see. Double doesn’t even begin to explain it. My eyelids would not stay open more than a slit and I could not see a thing. D stepped out of the lab to a phone and called the doctor who had us come right over.

Alarmed and shaken, he had us go immediately to an ophthalmologist. The ophthalmologist ran a few tests, gave me some drops for my eyes and then told me to rest. Sleep. Stop doing so much. No human was meant to do what I’d done in the last 4 weeks. Fatigue was causing my body to shut down. It was in self protection mode.

S did not have pneumonia, but he did have a bacterial respiratory infection. More antibiotics. Polyhistine D.

10 days of antibiotics and S was better, but I was not.

Thanksgiving Day dawned and we wondered if things were going to get more normal. We went to my sisters for dinner. S was fine when we got there …and within a few hours, he was running 104 temp. This time we didn’t even call the doctor, we just went to the emergency room. They called the doctor who ran up to see us.

Saddened that this child was once again sick he did x-rays and ran an IV of fluids. When all the tests came in, he had pneumonia, again. He did not want to admit him because there was RSV on the pediatric floor. S had already had enough trouble. So, we sat in the ER with IV antibiotics and fluids for 18 hours. We went home, exhausted, emotionally as well as physically. No one had told me that it was going to be like this. I’d never heard of a baby being so sick so often.

We took him in for the 10 day follow up from the ER. S had a horrific rash. The doc and I discussed it. He felt that it was from a food allergy, likely something I was eating. I had the choice of discontinuing breast feeding or to try to figure out what he was allergic to by eliminating foods till I found out what it was.

I started to tear up and told the doctor that I was so tired of seeing him suffer. Was I a terrible mother for going to the bottle. (My sister was an active member of Le Leche League, the idea of not breastfeeding wasn’t even on the radar!) He agreed that it was a wise move.

He asked how I was, and we talked of my inability to walk to the corner and needing help to get dressed. He was obviously at a point of confusion. Life just wasn’t supposed to be like this.

He encouraged me that I was doing a good job. That I’d done everything imaginable and then some. It wasn’t me, or D, it was just crappy luck.

We were just over 6 weeks into being a family. My son had been hospitalized 2 times, had been to the doctors office several times, I’d been to the doctor’s office for me 3 times and sent to a specialist.

And the roller coaster had just begun.

The Beginning

October 12, 1989, noon.


A test to see how the baby was responding to stress. Due date had been September 30. Test done, baby is fine. Don’t worry, this far over due, this test will send you into labor.

10:30 pm, contractions stop all together. Go for a 45 minute swim and a 2.5 mile walk.

October 13, 1989. 8 am, awaken, realized no more contractions … and there is a test in Intro to Sociology in the morning at 9 am that if the baby had come, I’d have been excused from.

Then realize there is a test in Spanish 11 am

And in American History at 1 pm

And in the 4th class at 3 pm and I’d not cracked a book or watched a video because I assumed these tests would not be taken.

So, I went to the pool and swam for 30 minutes, walked 2.5 miles and came home and took a shower. At 10 am had my husband drop me off at the kettle to study for the 4 tests I was facing since apparently this baby would not come until he was ready to graduate from college.



5 pm, I took a break and went for a 2 mile walk. Back to Kettle to study.

9 pm …exactly my stomach tightened up and it was incredibly uncomfortable. I went back to studying. I’d been having Braxton Hicks for WEEKS, it was a bit stronger, but not too bad.

9:20 on the nose … again .. tight! And then again at 9:40.

I was studying and laughing with all the regulars, co workers and friends.

10 pm, on the nose, another contraction.

10:05 pm ..another .. THAT got my attention.

I asked my friend Janet, sitting with me, who’d had a baby what she thought. She jumped up to get the phone for me to call D. I did.

He came and got me, they stayed bout 20 minutes.

I was mad, I still had a swim and half a mile walk to go for the day.

I’d also spent all that time studying apparently for nothing.

We stop by the house to get the bag that is supposed to be in the car.

D opens the door

Ssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss

What’s tht?

What?

Seriously D, what’s that ssssssssssssssssssssssssssssssss sound. I’m terrified of snakes, not getting out if that is what it is.

D winces. The tire is flat. I get out, call my mom who lives a block away.

We sit on the steps waiting for D to change the tire. I see D climb under the car. I look back at my mom. I hear a loud crash .. the car was on the ground and off the jack. I FREAKED …that was how my uncle died.

D looks around the corner of the car to see why I’m crying.

*whew*

Suddenly, contractions are 3 minutes apart .. Mom takes me to hospital, D calls his friend to come help him get car up onto jack and then a ride to the hospital (while he goes back to fix car)

I check into the hospital at midnight.

Has your water broke?

No

They check, it had. Apparently drinking umpteen zilion cups of coffee and going to the bathroom every few minutes can hide when the water breaks.

Labor progesses till 6:37 in the morning when S makes his entrance into the world. A few unusual things … 1, he can lift his head from the warmer and look around. Doc tells me to get prepared, this is one very strong child. 2, Meconium stain. That’s not good.

I’m smiling, I’m excited. Life is good.

D sleeps, mom goes home and sleeps I stay awake calling everyone I know to tell them S is here.

That night, visiting hours are about over. Mom is about to leave and goes to take our first family picture. I try to smile. I’ve been smiling all day. My smile won’t work. Nothing I do can make me feel like the smile I feel inside is on my face. Mom says I look tired, worn, but ok.

I had no idea that my world had just changed so dramatically. That inability to smile was the tip of the iceberg and that iceberg would control the next 21 years.