During this time, my strength had managed to decrease exponentially. Unable to stand for more than a few minutes without my legs collapsing, showers were no longer possible. We had a garden tub in our master bath that had a side to sit on, and stairs. My husband would lift my legs over the edge to put them in. He then would wash my hair and help me to bathe. Then we’d drain the water, because just being in the warm water seemed to drain me. After I’d recovered a bit, he’d help me to inch my way back to the edge, and he’d help me get my legs back over and then into a robe where I’d lay in bed for 2 hours to recover.
Walking was next to impossible, I fell almost daily. Chewing took on new challenges as I was unable to chew bread, anything crunchy or with texture. I’d eat yogurt, scrambled eggs, (which still required me to use my hand to force my jaw up and down). I found that anything that required chewing would require me to drink something at the same time to soften the food. However, as often as not, the process of trying to balance solid foods with the liquid would cause me to choke as I inhaled the liquid.
My family doctor had sent me to specialists at OU Medical Center. A resident saw me and she ordered a bunch of tests. When she found out that no outpatient testing was done, she said “well, it’s more serious than chronic fatigue syndrome and I can’t think what it would be, so I’m going to say MS till we have proof it’s not.” She scheduled me to come back in Mid March.
A few days after we’d spoken with the GI doc, we were at Children’s Medical Center for an EEG, so that before we met with the pediatric neurologist, the EEG would be done.
The next Monday, March 9, 1992 we went to see the neurologist. I was completely unable to dress that day. D had to help with each step of the process.
We arrived at CMC and checked in. They took us back to the exam room. I sat in the corner, barely able to move, talking took so much effort that I left it to D to explain why we were there. The doctor asked us to get him out of the carrier for an examination and D got up to do so. I got a judgmental look from both the nurse and the neurologist. They had no idea I was as sick as I was, they thought I just was on disconnect.
He talked to us about the seizure and explained that it hadn’t been epilepsy. It had been because his throwing up (which B decided that since he’d demonstrated for everyone else, he might as well demonstrate for the neuro as well) had been so severe he’d not gotten enough oxygen and that is what caused the seizure. Having been a child that would hold my breath till I passed out and then had a seizure, I was familiar with the process.
He was concerned that his muscle tone was poor. That he’d not developed past the new born stage at all. While the seizure did not concern him, much else did. He wanted us to return in 3 weeks. He gave us some exercises to do with him.
The next morning, I woke up, D got B out of his crib and we both headed to the living room. D was going to change him and then give him to me to feed.
We have a few pictures of this, my feeding him. I did not hold the bottle. I held him and was unable to hold the 4 oz bottle. My coordination was gone and it took way too much strength to keep my hand in place. Someone would place him in my arms, and put the bottle in his mouth, prop it with a cloth diaper. I would hold him a little ways out, if I cuddled him close, he’d stiffen up and refuse to eat.
There is little that has ever caused me to feel like a complete and utter failure except my son refusing to allow me to hold him close. I did not know it at the time, but that was an important clue as to what was facing us.
Holding him toward the end of my knees one hand under him, the other holding his foot and a cloth diaper to hold the bottle. Hoping that we’d time things right to get the bottle out of his mouth and him sitting before he threw up was quite the battle.
D was changing him while I went to the bathroom. I came out and turned to sit down. I could no longer sit, but rather braced my legs against the couch (or chair) and dropped. D was changing B on the floor where I’d be sitting on the couch. As I turned, I felt my legs collapse. My arms went between me and I landed in an arch over my son.
I wrenched my shoulder, but my son was ok. I’d arched enough in the fall to protect him.
This shook me to my core. I could have seriously injured my son. We’d planned on taking my mom out to eat to thank her for her assistance with S during the end of the pregnancy and hospitalizations. We kept thinking I’d feel better tomorrow. We decided that nothing was changing, so we’d take her out.
That night, I went to leave the house to go to dinner with my family and My legs would not allow me to step down that first step. My mom and D decided to help me by getting the couch cushions for me to drop down on. They guided my fall, then helped me to butt scoot down the stairs. They both helped me up, loaded me and the kids into the car and off to dinner we went.
We came back to my house and I was unable to move my leg to get up to the stairs. Between my wrenched shoulder and that, D and Mom decided it would be best for me to go to the ER. I did.
A doctor we’d seen several times with S was there. He examined me and was visibly worried. He told D that he’s been watching me decline over the last 2 ½ years and we need to find out what was wrong. He was going to admit me.
He called the Medical School and they said “she has an appt send her home”. He then said “I’m admitting your patient, get your doctors down here.” I had no idea at the time, but Dr. R probably saved my life.
A resident came down and examined me. He said he thought he knew what was going on, but wanted another opinion. He called another resident down and would not talk to him he wanted a non biased thought. So, the second resident examined me. When he was done the first came over and they looked at each other and without blinking both said, simultaneously, “Myasthenia Gravis”
Showing posts with label beginnings. Show all posts
Showing posts with label beginnings. Show all posts
Monday, August 9, 2010
Marching on
B was admitted around 2 pm on New Years Eve, a bad time for an admission. We had no idea what was going to happen, no real understanding of failure to thrive. We’d been told he would be there till he regained to his 9 pounds 8.5 oz birth weight. When a child is admitted to the hospital under failure to thrive, the parents cannot feed the child. I’d been warned, and it was explained that the doctors did not suspect me, but it was policy. I don’t remember if it was hospital policy or state law. The nurses said that normally, a parent is asked to leave the room, but the doctor had said I could stay close, and stroke his arm or head.
He had an IV attached to his head with many apologies to me for not putting it elsewhere. I tried to assure the IV nurse that I was familiar with babies on IV’s and understood that as bad as it looks, it’s a safer place.
Between the allowances and his size, they were a bit confused on failure to thrive. Almost 8 pound babies aren’t normally failure to thrive. As the nurse finished the first feeing, she was removing the bottle from his mouth and he proceeded to projectile vomit before the nipple was gone. Like the plug had been removed and the gusher flowed. The nurse, a bit annoyed (um, I’d told her that was what happened!) handed him back to me and went and changed.
When it came time for the next feeding, another nurse came in, with a few towels. She’d been warned. She fed him, we talked, I stroked. As she removed the bottle, she was covered, the towels were not sufficient.
A nurse came in the middle of the night, and the same thing happened.
The next morning a nurse brought me the bottle to feed him. I was still too weak to pick him up, so it required her helping me to get settled. I fed him and a nurse came in to help get him settled off the bottle, and knowing what would happen, she came prepared. B was scheduled for tests that day.
There was a distinct difference in the way the nurses were treating me. I can remember thinking how odd it was, when they thought I was doing something to my child, they were rude. When they knew I was doing none of it, they were kind, compassionate, even a bit sad.
I can’t help but wonder, doesn’t the mother who *is* doing something need that compassion for someone to reach beyond their pain to get to the reason why they are in pain so they don’t inflict pain on their child?
I don’t remember the order the tests were done, or even all the tests, what I do remember was a constant stream of technicians coming to get my newborn. Sometimes they’d let me come, other times not.
EEG, Upper GI, Barium Swallow, Swallowing study, and who knows what else.
Eight days later we left with a referral to an orthopedist (his legs were, in the doctor’s words, “wonky”) and a Pediatric Gastroenterologist and dermatologist for the rash that was everywhere. The next day we went to Dr. D’s. The GI doctor. He’d only gotten up to 8 pounds 14 oz, but the family doctor felt he was moving in the right direction.
B decided to baptize him as well. It helped, the doctor said he didn’t need my description of what was going on. What bothered me was that it was the first time he’d done that when feeding had been just at a random time. It would not be the last.
Dr. D changed his formula to a ‘pre digested’ soy formula (smelt like burnt broccoli) and added reglan.
Several days later he called to find out how things were going. When he called, D was cleaning up from one of his projectile vomiting episodes.
I was beside myself. This beautiful baby had already been through so much! What was really getting to me was his lack of cry. “eh eh eh eh” was as much as we got. His eyes had still not opened beyond slits and I was angry. Children don’t have eyes opening issues like dogs! My baby couldn’t open his eyes! He couldn’t cry, he couldn’t keep food down.
The eyes were such a big issue that on the rare event he did get them slightly open, my toddler would declare “Hiz eyez open Hiz eyez open!”
We went to see the pediatric orthopedist as the family doctor had wanted. He became annoyed with me saying “there is nothing wrong with this child but an over reactive mother! Stop fussing over him. His legs are fine, he’s perfectly healthy. Live your life!”
B responded to the doctors anger by throwing up on him.
We called the GI doctor to say nothing had changed. He changed the formula again.
By now, he was 6 weeks old. We got up the morning he turned 6 weeks and his eyes were WIDE open. Looking around at this world he’d not seen before he awarded us with more projectile vomiting.
We had a follow up with both the family doc and the GI doc that day. Neither were happy with his lack of development. The GI doc changed his formula ..again.
Two weeks later, B finished feeding, threw up, then his eyes rolled back in his head and he went limp as a wet noodle. There he was, in my arms, with zero tone and not really ‘there’. We called the GI doc (because it happened while throwing up) and the GI doc said in the morning he’d make a referral to the pediatric neurologist. What had just happened was a seizure.
He had an IV attached to his head with many apologies to me for not putting it elsewhere. I tried to assure the IV nurse that I was familiar with babies on IV’s and understood that as bad as it looks, it’s a safer place.
Between the allowances and his size, they were a bit confused on failure to thrive. Almost 8 pound babies aren’t normally failure to thrive. As the nurse finished the first feeing, she was removing the bottle from his mouth and he proceeded to projectile vomit before the nipple was gone. Like the plug had been removed and the gusher flowed. The nurse, a bit annoyed (um, I’d told her that was what happened!) handed him back to me and went and changed.
When it came time for the next feeding, another nurse came in, with a few towels. She’d been warned. She fed him, we talked, I stroked. As she removed the bottle, she was covered, the towels were not sufficient.
A nurse came in the middle of the night, and the same thing happened.
The next morning a nurse brought me the bottle to feed him. I was still too weak to pick him up, so it required her helping me to get settled. I fed him and a nurse came in to help get him settled off the bottle, and knowing what would happen, she came prepared. B was scheduled for tests that day.
There was a distinct difference in the way the nurses were treating me. I can remember thinking how odd it was, when they thought I was doing something to my child, they were rude. When they knew I was doing none of it, they were kind, compassionate, even a bit sad.
I can’t help but wonder, doesn’t the mother who *is* doing something need that compassion for someone to reach beyond their pain to get to the reason why they are in pain so they don’t inflict pain on their child?
I don’t remember the order the tests were done, or even all the tests, what I do remember was a constant stream of technicians coming to get my newborn. Sometimes they’d let me come, other times not.
EEG, Upper GI, Barium Swallow, Swallowing study, and who knows what else.
Eight days later we left with a referral to an orthopedist (his legs were, in the doctor’s words, “wonky”) and a Pediatric Gastroenterologist and dermatologist for the rash that was everywhere. The next day we went to Dr. D’s. The GI doctor. He’d only gotten up to 8 pounds 14 oz, but the family doctor felt he was moving in the right direction.
B decided to baptize him as well. It helped, the doctor said he didn’t need my description of what was going on. What bothered me was that it was the first time he’d done that when feeding had been just at a random time. It would not be the last.
Dr. D changed his formula to a ‘pre digested’ soy formula (smelt like burnt broccoli) and added reglan.
Several days later he called to find out how things were going. When he called, D was cleaning up from one of his projectile vomiting episodes.
I was beside myself. This beautiful baby had already been through so much! What was really getting to me was his lack of cry. “eh eh eh eh” was as much as we got. His eyes had still not opened beyond slits and I was angry. Children don’t have eyes opening issues like dogs! My baby couldn’t open his eyes! He couldn’t cry, he couldn’t keep food down.
The eyes were such a big issue that on the rare event he did get them slightly open, my toddler would declare “Hiz eyez open Hiz eyez open!”
We went to see the pediatric orthopedist as the family doctor had wanted. He became annoyed with me saying “there is nothing wrong with this child but an over reactive mother! Stop fussing over him. His legs are fine, he’s perfectly healthy. Live your life!”
B responded to the doctors anger by throwing up on him.
We called the GI doctor to say nothing had changed. He changed the formula again.
By now, he was 6 weeks old. We got up the morning he turned 6 weeks and his eyes were WIDE open. Looking around at this world he’d not seen before he awarded us with more projectile vomiting.
We had a follow up with both the family doc and the GI doc that day. Neither were happy with his lack of development. The GI doc changed his formula ..again.
Two weeks later, B finished feeding, threw up, then his eyes rolled back in his head and he went limp as a wet noodle. There he was, in my arms, with zero tone and not really ‘there’. We called the GI doc (because it happened while throwing up) and the GI doc said in the morning he’d make a referral to the pediatric neurologist. What had just happened was a seizure.
Friday, August 6, 2010
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.”
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.”
1991
Christmas Day brought another high fever and another ER visit. More antibiotics and this time, a nebulizer. S continued to develop quickly. He showed an early sense of humor, smart, funny and coordinated.
In Febrary, I experienced one of the most humiliating experiences of my life. I went to the family doctor to get a diaphragm. It seemed to make the most sense for birth control. With a sick baby and not feeling well myself, the idea of another child was truly frightening.
I went to the doctor and he went to fit me for a diaphragm. He fitted me, then had me show that I could actually get it into place. I had a hard time squeezing it, having no idea that it was muscle weakness that made it impossible. For 30 minutes I struggled to insert it properly and finally, the doctor decided that if it was this much trouble, it was not appropriate.
He talked to me about going to a new doctor, a different doctor to see what was wrong. I dismissed it. I was just ‘depressed’.
He prescribed me birth control pills, reluctantly. Not knowing what was wrong, introducing hormones to the mix was not his idea of good medicine. But weighing that with no birth control, it seemed the better option.
In March, S got strep throat and ear infections. Another night in the ER with IV antibiotics, and exhaustion like I’d not known before set in. A few days later I took my very sore throat to the doctor. I had strep as well.
I told him that for the last month, my fatigued had multiplied. Getting through S’s ER visit was next to impossible. Taking care of him after that, was a true feat. There were days that I literally could not step into the shower.
I was having more trouble chewing, frequently choking, my jaw did not seem to want to stay in place. He sent me to an ENT to see what he thought about a disorder where the jaw instead of being too tight, was too loose. The ENT said it was definitely Lax TMJ, probably because all my joints were loose. (a problem from birth). He prescribed valium ..which is often used with TMJ. I still don’t know why it was given for LAX TMJ.
I got significantly weaker, struggling to change my sons clothing, lifting him into the high chair was next to impossible, but most of the time he could climb up himself.
In April, I received a phone call from a dear friend, my ex sister in law V. She was crying. Her ex husband had died in a motor cycle accident. V & G had been very close with my ex, R, and I. V and I had maintained a friendship after my divorce. G had moved away, and come back. He was the father of her son and had finally taken responsibility. He was also a neighbor of mine and our friendship had renewed.
I went to his funeral thinking “I’ll be ok as long as I can’t see R or V” The usher sat me right behind them. Which V told me later was a huge comfort to her, to have R and I so close to her. I was fine, till I saw R trembling from crying, then I started which started V crying. After the funeral, V, R and V’s husband and I went out for lunch. We talked about our lives and where we were. R told me he was very concerned because I did not look like me.
I got queezy while sitting in the resteraunt and V joked that I was pregnant. I denied it, then as I was driving home thought … hmmmmmmm . I stopped and bought a pregnancy test. It was positive! I was terribly heart broken. I held S like I’d never been allowed to touch him. It seemed to me like I’d had this child to myself for far too short a time.
My fears of health and another childs health took the back seat. I adjusted to the pregnancy, emotionally, but not physically. I continued to degenerate almost weekly. I could see the concern in my doctors eyes every time I went to see him. Even when I wasn’t the patient. I found out recently, that that period of time was the scariest he’d had as a doctor. He felt I was dying in front of him and there was nothing that he could do. Anything he could think of that could be wrong, had been ruled out. He was at an utter loss.
He referred me to the medical school to handle the high risk pregnancy. Not knowing what was wrong left him unwilling to handle the pregnancy. But he did agree to come see the baby in the hospital and not wait for the 6 weeks that he normally does. (the medical school normally handled the pregnancy and the post natal period before the family went to the pediatrician or family doc). He could arrange it because he was on staff.
I went to the clinic and they tested me for thyroid disorder. When my thyroid tests came back normal, they diagnosed me as having Chronic Fatigue Syndrome. My primary care doctor said he didn’t think so, but he had no other suggestions either.
Samuel continued to get sick, frequently. ER’s were a normal part of our life .. Easter, Memorial Day and 4th of July. This child had a penchant for getting sick on a holiday! (He would be 5 years old before we did not spend a holiday in the hospital .. )
I went through the first trimester, unable to eat anything more substantial than scrambled eggs. The second trimester was better but when the third came, my fatigue multiplied. I began needing daily assistance to get dressed. I was no longer able to drive, my blood pressure was constantly low. Very low. 90/55 was a normal reading for me. That left no place for it to drop without me fainting.
The Thursday appointment before B was born they did an ultrasound. His size was a concern and they felt if they waited to deliver, he’d be so big they’d be required to do a C Section. So they said to come back Monday to check his size. The receptionist said “Now when you come on Monday, make sure you tell them you’re not one of the high risk patients.” Rather alarmed, my only reason for BEING there was because of High Risk! I called my primary care doctor who was livid. He’d specifically made the referral based on my unknown health problems
Monday came and I started to get into the shower. My legs started to collapse under me. I fell to the side and hit my ribs on the toilet. My knees hit the seat. Thankfully, my pregnant belly did not jam into any part of the toilet.
I sat for an hour before I was able to get up to go call anyone. I called the clinic telling them what happened. I called the clinic and told them what happened. They said “so you want to cancel. You should have given us more notice, but come in tomorrow at 10. “
When I got there at 10, I checked in. I was having trouble breathing. I’d cracked a rib while falling into the toilet. B’s estimated weight was well over 9 pounds so they scheduled me for an induction the next day.
In Febrary, I experienced one of the most humiliating experiences of my life. I went to the family doctor to get a diaphragm. It seemed to make the most sense for birth control. With a sick baby and not feeling well myself, the idea of another child was truly frightening.
I went to the doctor and he went to fit me for a diaphragm. He fitted me, then had me show that I could actually get it into place. I had a hard time squeezing it, having no idea that it was muscle weakness that made it impossible. For 30 minutes I struggled to insert it properly and finally, the doctor decided that if it was this much trouble, it was not appropriate.
He talked to me about going to a new doctor, a different doctor to see what was wrong. I dismissed it. I was just ‘depressed’.
He prescribed me birth control pills, reluctantly. Not knowing what was wrong, introducing hormones to the mix was not his idea of good medicine. But weighing that with no birth control, it seemed the better option.
In March, S got strep throat and ear infections. Another night in the ER with IV antibiotics, and exhaustion like I’d not known before set in. A few days later I took my very sore throat to the doctor. I had strep as well.
I told him that for the last month, my fatigued had multiplied. Getting through S’s ER visit was next to impossible. Taking care of him after that, was a true feat. There were days that I literally could not step into the shower.
I was having more trouble chewing, frequently choking, my jaw did not seem to want to stay in place. He sent me to an ENT to see what he thought about a disorder where the jaw instead of being too tight, was too loose. The ENT said it was definitely Lax TMJ, probably because all my joints were loose. (a problem from birth). He prescribed valium ..which is often used with TMJ. I still don’t know why it was given for LAX TMJ.
I got significantly weaker, struggling to change my sons clothing, lifting him into the high chair was next to impossible, but most of the time he could climb up himself.
In April, I received a phone call from a dear friend, my ex sister in law V. She was crying. Her ex husband had died in a motor cycle accident. V & G had been very close with my ex, R, and I. V and I had maintained a friendship after my divorce. G had moved away, and come back. He was the father of her son and had finally taken responsibility. He was also a neighbor of mine and our friendship had renewed.
I went to his funeral thinking “I’ll be ok as long as I can’t see R or V” The usher sat me right behind them. Which V told me later was a huge comfort to her, to have R and I so close to her. I was fine, till I saw R trembling from crying, then I started which started V crying. After the funeral, V, R and V’s husband and I went out for lunch. We talked about our lives and where we were. R told me he was very concerned because I did not look like me.
I got queezy while sitting in the resteraunt and V joked that I was pregnant. I denied it, then as I was driving home thought … hmmmmmmm . I stopped and bought a pregnancy test. It was positive! I was terribly heart broken. I held S like I’d never been allowed to touch him. It seemed to me like I’d had this child to myself for far too short a time.
My fears of health and another childs health took the back seat. I adjusted to the pregnancy, emotionally, but not physically. I continued to degenerate almost weekly. I could see the concern in my doctors eyes every time I went to see him. Even when I wasn’t the patient. I found out recently, that that period of time was the scariest he’d had as a doctor. He felt I was dying in front of him and there was nothing that he could do. Anything he could think of that could be wrong, had been ruled out. He was at an utter loss.
He referred me to the medical school to handle the high risk pregnancy. Not knowing what was wrong left him unwilling to handle the pregnancy. But he did agree to come see the baby in the hospital and not wait for the 6 weeks that he normally does. (the medical school normally handled the pregnancy and the post natal period before the family went to the pediatrician or family doc). He could arrange it because he was on staff.
I went to the clinic and they tested me for thyroid disorder. When my thyroid tests came back normal, they diagnosed me as having Chronic Fatigue Syndrome. My primary care doctor said he didn’t think so, but he had no other suggestions either.
Samuel continued to get sick, frequently. ER’s were a normal part of our life .. Easter, Memorial Day and 4th of July. This child had a penchant for getting sick on a holiday! (He would be 5 years old before we did not spend a holiday in the hospital .. )
I went through the first trimester, unable to eat anything more substantial than scrambled eggs. The second trimester was better but when the third came, my fatigue multiplied. I began needing daily assistance to get dressed. I was no longer able to drive, my blood pressure was constantly low. Very low. 90/55 was a normal reading for me. That left no place for it to drop without me fainting.
The Thursday appointment before B was born they did an ultrasound. His size was a concern and they felt if they waited to deliver, he’d be so big they’d be required to do a C Section. So they said to come back Monday to check his size. The receptionist said “Now when you come on Monday, make sure you tell them you’re not one of the high risk patients.” Rather alarmed, my only reason for BEING there was because of High Risk! I called my primary care doctor who was livid. He’d specifically made the referral based on my unknown health problems
Monday came and I started to get into the shower. My legs started to collapse under me. I fell to the side and hit my ribs on the toilet. My knees hit the seat. Thankfully, my pregnant belly did not jam into any part of the toilet.
I sat for an hour before I was able to get up to go call anyone. I called the clinic telling them what happened. I called the clinic and told them what happened. They said “so you want to cancel. You should have given us more notice, but come in tomorrow at 10. “
When I got there at 10, I checked in. I was having trouble breathing. I’d cracked a rib while falling into the toilet. B’s estimated weight was well over 9 pounds so they scheduled me for an induction the next day.
Thursday, August 5, 2010
The Rest of the First Year
Christmas Day, we woke up ready for our first Christmas as a family. S was decked out in his puppy dog romper, my mom came over and D cooked a wonderful dinner. S was tired and worn out before dinner so I put him down. He was only 2 months old and there had been much commotion. My very pregnant sister and her 4 year old had come over and S was just worn out. During dinner he started to scream. I jumped up and went to him. He was burning up. I called my sister to help me undress him, change him and take his temp. 103.6. Our first Christmas would be spent in the same place as the first Thanksgiving … in the hospital emergency room. Ear infections and bronchitis. More antibiotics and this time some breathing treatments to ensure that there was no furthering of the lung issues.
I chose to go back to school, against my family’s wishes but I really thought getting out would help. I took 2 classes, an evening meteorology class and a day time humanities 2. I struggled with both, there were days that to get to class I had to stop 5 or 6 times on the way. My mom had decided meteorology sounded fun and took it with me. Having her to read me the text and drive me to and from class probably were the only thing that got me through it.
By February, my symptoms were not getting better. The doctor referred me to a neurologist. I went and saw her, she took a complete history.
She asked about symptoms, family situation, history .. and then told me that she felt there was nothing wrong, but she would run the tests to make sure.
She said that I needed attention, and evidently, this was the only way I knew how to go about it. I asked her what made her say that. She said “Because you have every symptom I asked you about, you even had pain on your face when I pressed on the cheeks.” (years later, I’d finally get referred to ENT to evaluate for sinus surgery. He said that it was a chronic sinus infection …probably there from my pre teen days …gee, and it’s amazing I had pain on my face?)
She ordered the tests, only to find out that since I was on Medicaid, they did not cover outpatient testing. So she told me to go home and be a parent.
In late March, swallowing became nearly impossible. I choked and choked. I wound up severely dehydrated and my primary doc admitted me for fluids. He called the neuro and said I was ill and in the hospital. Come do the tests. She came in, annoyed that she’d been called back in but agreeing to do the testing.
She did an EMG, blood work, EEG, CT scan, MRI … and full evoked potentials and then dismissed me. The nurses were confused because a test involving an IV had been ordered, but not done.
She informed me that all the tests were 100% normal and that there was absolutely nothing wrong with me, just as she’d suspected. She slammed my chart shut and walked toward the door. As she reached for the door knob, I said “if stress and depression is making my body feel like this, behave like this, should I see a psychiatrist”
Her response still rings in my ears
“No, you need to stop being a baby about being a new mother.”
I went back to my primary care doctor, scared, worried, worn out and weak. The thing was … I wanted her to be right! I wanted it to be all in my head. I did not want something seriously wrong with me! I didn’t even want something moderately severe with me!
My primary doc got the letter from her saying that she’d ran all those tests and they’d been normal. He did state that most specialists doing this amount of tests give him more than just their eval, but copies too, but a few specialists only give their interpretations. Because of that, he’d like me to see someone else. I refused. I just needed to grin and bear it.
Maybe I was trying too hard to get attention. Maybe having a sick child was making me crazy?
In April, S got pneumonia bad enough to be hospitalized again. It started with a typical URI .. then the fever went out of control. Found in the doctor’s office, quickly responded to antibiotics, but 2 days after the last dose, we found ourselves at 5 am in the ER with a baby who had 105 fever. It would not be the last time we saw 105.
They gave IV antibiotics and sent us home. As had happened before, an infection was making its rounds around pediatrics and they felt he’d be better off at home. We took him home and around 10 am, he was sitting, rather joyfully, in his walker. He rolled over and SQUEALED with glee. He’d been chewing on a white cloth diaper. I looked and that diaper was covered in blood. Before I could react, I realized I was seeing the very tip of a tooth. *whew!* why didn’t anyone tell me that gums bleed when that tooth breaks through! I might not have noticed had he not been chewing on white. I might not have panicked like I did, had we not spent the night in the ER.
2 days after his antibiotics were done, his fever was high again. Another call to the doctor who said there was only 2 kids in pediatrics, and neither had anything contagious, we were going to admit him for long term IV antibiotics. This time, he had pneumonia, again. We stayed for 8 days … I only sort of remember it.
The day after he got out of the hospital, I was at school and participated in a student health survey. They did several tests including blood sugar. Mine was elevated, they called it diabetes, but I found out later that it was in the pre diabetes range.
I went on a diabetic diet, and felt better. My primary care doctor and I both thought maybe the weakness and fatigue had been a blood sugar issue.
S was dedicated at church with 17 other babies. 2 of them, friends of ours. After church that day we went for a Barbecue with some of the other families who’d participated in the dedication. All was fine, and we stayed late into the evening. The babies had all fallen asleep in play pens in various rooms in the house. We were playing a game of some sorts when S started to cry. I went to check on him and he was burning up. My friend helped me to take his temperature, trying to comfort him. He had 104 fever so back to the ER we went. Ear infection. Again.
In early May S was sent to a Pulmonologist for his frequent lung infections and asthma. At Children’s Medical Center they did not have a full time pulmonologist. He came to town 2 times a month to do clinics. We went to the appointment only to find out that the doctor had been in a car accident on his way in and would not be coming. They had us see the developmental pediatrician just to get the process started.
Based on his medical history, they’d planned on doing some lab work to test for immune issues. When the pediatrician examined S to find that he was not only not developmentally delayed, but way ahead of schedule, he cancelled the lab work. He told me that all children with immune deficiencies are behind on milestones.
He was very concerned that my 7 month old son was not babbling or making any sounds other than laughter and crying. He ordered hearing tests for him, but we’d have to wait until after m y brothers wedding June 2. We’d be out of town for the wedding for 2 weeks. The tests were scheduled for the day after our return.
As an interpreter for the deaf, I was alarmed, scared … worried. He was also concerned because he had a condition known as "Meatal Stenosis” where the urethra is too small, his was almost blocked. He wanted to do surgery. He called the primary doctor before we left who said that with all S had been through, he’d prefer to wait. Frustrated, and in strong disagreement, he told me to talk to the family doctor and make my own decision. Let him know and he’d make the referral to have that taken care of. When I talked with the primary doctor he said that about ½ actually need surgery. It is a condition that CAN be outgrown, usually by age 4, but the surgery was invasive. For a girl, they go in and do 4 or 5 surgeries. A boy, they do 1 …but there is the requirement of placing a stent into the penis for 5 minutes a day 4 times a day. I opted to wait and see.
We got to California and stayed a couple of days with my cousin. S kept up with her kids, the younger one was a year older than him. But he crawled right after them and they had a ball. While we were in the Bay Area, he had 4 teeth come in. He never acted like he was teething, they just were not there one day and there the next.
We arrived in Central California to my Dad’s house and called my husband who was visiting HIS brother in Montana. I put the phone to S’s ear, tearing up because it was a reminder that we were facing possible hearing loss. Suddenly S’s face brightened up and he said clear as a bell “DADDY!”
Well, alrighty then! No hearing loss, just a refusal to make sounds till he could make sense of those sounds. By the time we left California he could say Daddy, gampa, gamma, dog, coke, bean (green beans), pool, and cow. He also, at 8 months old started to walk while we were there. He took his first steps on Father’s Day and was walking before we left 3 days later.
I got back into town and called the developmental pediatrician and told him. He said that was odd, but he wanted to hear him speak before he cancelled the test. We didn’t need an appt, he’d just come out to the waiting room between appts for other children and hear. We did, he did and he shook his head and cancelled the test. He had no explanation of how or why he’d been silent till then. (we would later learn this is a bedrock of his behavior .. do not do something till you can do it RIGHT the first time.)
We were back in town for 10 days when S woke with another 105 fever. Back to the doctor and into the hospital. Breathing treatments for the pneumonia, and more tests to see if the reflux was causing the problem. This stay was only 5 days, but was 5 days too long.
The family doctor again sent him to CMC to the pulmonologist. We arrived and the doctor was there this time. They did chest x-rays and lab work before the doctor saw him. When the doctor came into the examining room to see this 8 month old child walking. He immediately apologized for the lab work, saying if he’d realized he was so far ahead on his milestones, that he’d not have ordered the tests. His lungs were less than clear, and he ordered a breathing treatment. When he came back in, he was moderately happy with the results, but would have liked them to have been better. He sent us home with 3 inhalers and a spacer to use to administer the inhalers.
His diagnosis was “Reactive Airway Disease” but he did not feel it was allergic asthma, but rather weakened lungs. He had no answer as to why this child who’d had way too many ear infections and pneumonia’s could actually walk 4 months early.
A few weeks later, on a Sunday afternoon, the phone rang. It was the developmental pediatrician. He had some news for us and an apology for not having tested him when he first saw him. Samuel had a condition called “Hypogammagobulinemia” It is an IgG subclass 2 deficiency. It is a syndrome that comes with a cluster of symptoms and usually developmental issues. The primary problem aside from developmental was bacterial respiratory infections. He was immediately started on a low dose, daily antibiotic. The pediatrician said that he needed infusions of IVIG .. Intravenous Gamma Globulin. They would start on the paper work. Because he was on Medicaid, it would need pre approval and recommendation of 3 doctors.
The primary care doctor signed off on it, as did the developmental pediatrician, but the pulmonologist wanted to wait. We wound up going back and forth with any 2 of his doctors at any given time being for it, but the others not. When we finally did get 3 doctors to approve it, there was a recall and he never did receive it.
When August hit, I went back to school. The heat of the summer was getting to me and the weakness was back in full strength. The family doctor had retested me four different times never able to repeat the high blood sugar. He decided that it was a fluke and I did not have diabetes or pre diabetes.
As I went back to school, it was during this time that my eating disorder returned with a vengeance. I’d managed to put it on hold while pregnant, and was just too sick to pay attention to it after. I ate when I could … there was something about not being able to eat that made me more willing to eat. I guess it’s my typical rebellious nature bucking at the lack of choice.
I returned to the diet pills and laxatives of my pre pregnancy state, and while I could not exercise like I had, I still did do some. Whatever I could.
In early September, I woke up one morning throwing up. I could not stop and when D took me to the doctor he was alarmed. I don’t remember why, but he put me in the hospital. I missed a whole week of classes.
In October we celebrated S’s first birthday. Many people at his party and his refusal to eat cake instead demanding Geen Beans made it a memorable experience. We put him to bed that night and as I kissed him, I realized he was too warm. He wasn’t acting ill, so I just put him to bed, but in the back of my mind I was going “oh boy! Not again!”
The next morning we got up and called the doctor. He was admitted, again, from the doctors office to the hospital. Another case of pneumonia. While he was in the nurses tried to convince the IV nurse that his foot was not appropriate for this child. She kept insisting that 1 year olds can’t walk that well and will not walk on a foot with an IV in it. (She’d been unable to access his arm) After he’d walked out 3 IV’s, the doctor finally ordered one to be placed in his head. This looked awful, rather frightening, but it was an easy access and he got tangled up in the tubing less than he had even in the arm!
A nurse walked into his room to give him his breathing treatment. He stood up and placed his hands on his hips and in a very clear voice said “Don’t you do that!” To which, we busted up laughing.
During this time my health was getting worse and worse. I’d been unable to chew again and was torn between making my desperate need to loose weight and my inability to chew.
The class after the Thanksgiving break, I went to walk to my classroom. I stopped for the third time to rest and was unable to stand up, my legs simply would not work. There I was, a 25 year old woman and I couldn’t even move my legs enough to change positions much less stand up and walk. Terrified, I sat there for 3 hours, trying every few minutes to move. When I’d finally gained enough strength to walk, having missed my class, I left. I started the procedure to drop classes the next day. I was just 2 weeks form finals and it was too late to officially drop. I had to have instructors approval. My General Physical Science professor would not hear of it, insisting I take an Incomplete. I was unable to finish the work the following spring and it has been on my transcript as an IF.
I chose to go back to school, against my family’s wishes but I really thought getting out would help. I took 2 classes, an evening meteorology class and a day time humanities 2. I struggled with both, there were days that to get to class I had to stop 5 or 6 times on the way. My mom had decided meteorology sounded fun and took it with me. Having her to read me the text and drive me to and from class probably were the only thing that got me through it.
By February, my symptoms were not getting better. The doctor referred me to a neurologist. I went and saw her, she took a complete history.
She asked about symptoms, family situation, history .. and then told me that she felt there was nothing wrong, but she would run the tests to make sure.
She said that I needed attention, and evidently, this was the only way I knew how to go about it. I asked her what made her say that. She said “Because you have every symptom I asked you about, you even had pain on your face when I pressed on the cheeks.” (years later, I’d finally get referred to ENT to evaluate for sinus surgery. He said that it was a chronic sinus infection …probably there from my pre teen days …gee, and it’s amazing I had pain on my face?)
She ordered the tests, only to find out that since I was on Medicaid, they did not cover outpatient testing. So she told me to go home and be a parent.
In late March, swallowing became nearly impossible. I choked and choked. I wound up severely dehydrated and my primary doc admitted me for fluids. He called the neuro and said I was ill and in the hospital. Come do the tests. She came in, annoyed that she’d been called back in but agreeing to do the testing.
She did an EMG, blood work, EEG, CT scan, MRI … and full evoked potentials and then dismissed me. The nurses were confused because a test involving an IV had been ordered, but not done.
She informed me that all the tests were 100% normal and that there was absolutely nothing wrong with me, just as she’d suspected. She slammed my chart shut and walked toward the door. As she reached for the door knob, I said “if stress and depression is making my body feel like this, behave like this, should I see a psychiatrist”
Her response still rings in my ears
“No, you need to stop being a baby about being a new mother.”
I went back to my primary care doctor, scared, worried, worn out and weak. The thing was … I wanted her to be right! I wanted it to be all in my head. I did not want something seriously wrong with me! I didn’t even want something moderately severe with me!
My primary doc got the letter from her saying that she’d ran all those tests and they’d been normal. He did state that most specialists doing this amount of tests give him more than just their eval, but copies too, but a few specialists only give their interpretations. Because of that, he’d like me to see someone else. I refused. I just needed to grin and bear it.
Maybe I was trying too hard to get attention. Maybe having a sick child was making me crazy?
In April, S got pneumonia bad enough to be hospitalized again. It started with a typical URI .. then the fever went out of control. Found in the doctor’s office, quickly responded to antibiotics, but 2 days after the last dose, we found ourselves at 5 am in the ER with a baby who had 105 fever. It would not be the last time we saw 105.
They gave IV antibiotics and sent us home. As had happened before, an infection was making its rounds around pediatrics and they felt he’d be better off at home. We took him home and around 10 am, he was sitting, rather joyfully, in his walker. He rolled over and SQUEALED with glee. He’d been chewing on a white cloth diaper. I looked and that diaper was covered in blood. Before I could react, I realized I was seeing the very tip of a tooth. *whew!* why didn’t anyone tell me that gums bleed when that tooth breaks through! I might not have noticed had he not been chewing on white. I might not have panicked like I did, had we not spent the night in the ER.
2 days after his antibiotics were done, his fever was high again. Another call to the doctor who said there was only 2 kids in pediatrics, and neither had anything contagious, we were going to admit him for long term IV antibiotics. This time, he had pneumonia, again. We stayed for 8 days … I only sort of remember it.
The day after he got out of the hospital, I was at school and participated in a student health survey. They did several tests including blood sugar. Mine was elevated, they called it diabetes, but I found out later that it was in the pre diabetes range.
I went on a diabetic diet, and felt better. My primary care doctor and I both thought maybe the weakness and fatigue had been a blood sugar issue.
S was dedicated at church with 17 other babies. 2 of them, friends of ours. After church that day we went for a Barbecue with some of the other families who’d participated in the dedication. All was fine, and we stayed late into the evening. The babies had all fallen asleep in play pens in various rooms in the house. We were playing a game of some sorts when S started to cry. I went to check on him and he was burning up. My friend helped me to take his temperature, trying to comfort him. He had 104 fever so back to the ER we went. Ear infection. Again.
In early May S was sent to a Pulmonologist for his frequent lung infections and asthma. At Children’s Medical Center they did not have a full time pulmonologist. He came to town 2 times a month to do clinics. We went to the appointment only to find out that the doctor had been in a car accident on his way in and would not be coming. They had us see the developmental pediatrician just to get the process started.
Based on his medical history, they’d planned on doing some lab work to test for immune issues. When the pediatrician examined S to find that he was not only not developmentally delayed, but way ahead of schedule, he cancelled the lab work. He told me that all children with immune deficiencies are behind on milestones.
He was very concerned that my 7 month old son was not babbling or making any sounds other than laughter and crying. He ordered hearing tests for him, but we’d have to wait until after m y brothers wedding June 2. We’d be out of town for the wedding for 2 weeks. The tests were scheduled for the day after our return.
As an interpreter for the deaf, I was alarmed, scared … worried. He was also concerned because he had a condition known as "Meatal Stenosis” where the urethra is too small, his was almost blocked. He wanted to do surgery. He called the primary doctor before we left who said that with all S had been through, he’d prefer to wait. Frustrated, and in strong disagreement, he told me to talk to the family doctor and make my own decision. Let him know and he’d make the referral to have that taken care of. When I talked with the primary doctor he said that about ½ actually need surgery. It is a condition that CAN be outgrown, usually by age 4, but the surgery was invasive. For a girl, they go in and do 4 or 5 surgeries. A boy, they do 1 …but there is the requirement of placing a stent into the penis for 5 minutes a day 4 times a day. I opted to wait and see.
We got to California and stayed a couple of days with my cousin. S kept up with her kids, the younger one was a year older than him. But he crawled right after them and they had a ball. While we were in the Bay Area, he had 4 teeth come in. He never acted like he was teething, they just were not there one day and there the next.
We arrived in Central California to my Dad’s house and called my husband who was visiting HIS brother in Montana. I put the phone to S’s ear, tearing up because it was a reminder that we were facing possible hearing loss. Suddenly S’s face brightened up and he said clear as a bell “DADDY!”
Well, alrighty then! No hearing loss, just a refusal to make sounds till he could make sense of those sounds. By the time we left California he could say Daddy, gampa, gamma, dog, coke, bean (green beans), pool, and cow. He also, at 8 months old started to walk while we were there. He took his first steps on Father’s Day and was walking before we left 3 days later.
I got back into town and called the developmental pediatrician and told him. He said that was odd, but he wanted to hear him speak before he cancelled the test. We didn’t need an appt, he’d just come out to the waiting room between appts for other children and hear. We did, he did and he shook his head and cancelled the test. He had no explanation of how or why he’d been silent till then. (we would later learn this is a bedrock of his behavior .. do not do something till you can do it RIGHT the first time.)
We were back in town for 10 days when S woke with another 105 fever. Back to the doctor and into the hospital. Breathing treatments for the pneumonia, and more tests to see if the reflux was causing the problem. This stay was only 5 days, but was 5 days too long.
The family doctor again sent him to CMC to the pulmonologist. We arrived and the doctor was there this time. They did chest x-rays and lab work before the doctor saw him. When the doctor came into the examining room to see this 8 month old child walking. He immediately apologized for the lab work, saying if he’d realized he was so far ahead on his milestones, that he’d not have ordered the tests. His lungs were less than clear, and he ordered a breathing treatment. When he came back in, he was moderately happy with the results, but would have liked them to have been better. He sent us home with 3 inhalers and a spacer to use to administer the inhalers.
His diagnosis was “Reactive Airway Disease” but he did not feel it was allergic asthma, but rather weakened lungs. He had no answer as to why this child who’d had way too many ear infections and pneumonia’s could actually walk 4 months early.
A few weeks later, on a Sunday afternoon, the phone rang. It was the developmental pediatrician. He had some news for us and an apology for not having tested him when he first saw him. Samuel had a condition called “Hypogammagobulinemia” It is an IgG subclass 2 deficiency. It is a syndrome that comes with a cluster of symptoms and usually developmental issues. The primary problem aside from developmental was bacterial respiratory infections. He was immediately started on a low dose, daily antibiotic. The pediatrician said that he needed infusions of IVIG .. Intravenous Gamma Globulin. They would start on the paper work. Because he was on Medicaid, it would need pre approval and recommendation of 3 doctors.
The primary care doctor signed off on it, as did the developmental pediatrician, but the pulmonologist wanted to wait. We wound up going back and forth with any 2 of his doctors at any given time being for it, but the others not. When we finally did get 3 doctors to approve it, there was a recall and he never did receive it.
When August hit, I went back to school. The heat of the summer was getting to me and the weakness was back in full strength. The family doctor had retested me four different times never able to repeat the high blood sugar. He decided that it was a fluke and I did not have diabetes or pre diabetes.
As I went back to school, it was during this time that my eating disorder returned with a vengeance. I’d managed to put it on hold while pregnant, and was just too sick to pay attention to it after. I ate when I could … there was something about not being able to eat that made me more willing to eat. I guess it’s my typical rebellious nature bucking at the lack of choice.
I returned to the diet pills and laxatives of my pre pregnancy state, and while I could not exercise like I had, I still did do some. Whatever I could.
In early September, I woke up one morning throwing up. I could not stop and when D took me to the doctor he was alarmed. I don’t remember why, but he put me in the hospital. I missed a whole week of classes.
In October we celebrated S’s first birthday. Many people at his party and his refusal to eat cake instead demanding Geen Beans made it a memorable experience. We put him to bed that night and as I kissed him, I realized he was too warm. He wasn’t acting ill, so I just put him to bed, but in the back of my mind I was going “oh boy! Not again!”
The next morning we got up and called the doctor. He was admitted, again, from the doctors office to the hospital. Another case of pneumonia. While he was in the nurses tried to convince the IV nurse that his foot was not appropriate for this child. She kept insisting that 1 year olds can’t walk that well and will not walk on a foot with an IV in it. (She’d been unable to access his arm) After he’d walked out 3 IV’s, the doctor finally ordered one to be placed in his head. This looked awful, rather frightening, but it was an easy access and he got tangled up in the tubing less than he had even in the arm!
A nurse walked into his room to give him his breathing treatment. He stood up and placed his hands on his hips and in a very clear voice said “Don’t you do that!” To which, we busted up laughing.
During this time my health was getting worse and worse. I’d been unable to chew again and was torn between making my desperate need to loose weight and my inability to chew.
The class after the Thanksgiving break, I went to walk to my classroom. I stopped for the third time to rest and was unable to stand up, my legs simply would not work. There I was, a 25 year old woman and I couldn’t even move my legs enough to change positions much less stand up and walk. Terrified, I sat there for 3 hours, trying every few minutes to move. When I’d finally gained enough strength to walk, having missed my class, I left. I started the procedure to drop classes the next day. I was just 2 weeks form finals and it was too late to officially drop. I had to have instructors approval. My General Physical Science professor would not hear of it, insisting I take an Incomplete. I was unable to finish the work the following spring and it has been on my transcript as an IF.
Wednesday, August 4, 2010
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 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.
Tuesday, August 3, 2010
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.
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.
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