It's Friday
I remember back when I was working full time what it meant to wake up on a Friday morning. There was a little more spring in my step as I would head out the door knowing that I had two days off ahead of me. Somehow getting to Friday was a big accomplishment. It still is, even on bed rest. Friday marks another week down for me and a sense of anticipation as we draw closer to "the day."
I have a Traditional Catholic calendar that sits beside me on my tray table. On today's date the block has St. Raymond of Penafort (Priest, Religious, year 1275) and St. Emerentiana (Virgin and Martyr, year 304) and I have written in the number 19; the number of days left to go before delivery. I am praying my delivery occurs on February 11th, the Feast Day of Our Lady of Lourdes. I am finding my stay here in the hospital has everything to do with numbers; how many contractions I have in a day, the baby's heart rate, my blood pressure, (most mornings a tech has to knock on my head to see if I am still alive because my blood pressure runs pretty low {88/38 one morning}). Some numbers are more significant than others like the cervical length. The shorter that number is, the closer to the end you get. The uterine wall thickness; if this number gets really small than surgery is imminent as we do not want the wall to get so thinned out that it will separate and rupture.
While numbers are part of my daily routine here, the one number I look at first thing in the morning and the last thing in the evening is the number I have written on my calendar counting down the days when my daughter will be born and the prospect of a normal life resumes.
I remember back when I was working full time what it meant to wake up on a Friday morning. There was a little more spring in my step as I would head out the door knowing that I had two days off ahead of me. Somehow getting to Friday was a big accomplishment. It still is, even on bed rest. Friday marks another week down for me and a sense of anticipation as we draw closer to "the day."
I have a Traditional Catholic calendar that sits beside me on my tray table. On today's date the block has St. Raymond of Penafort (Priest, Religious, year 1275) and St. Emerentiana (Virgin and Martyr, year 304) and I have written in the number 19; the number of days left to go before delivery. I am praying my delivery occurs on February 11th, the Feast Day of Our Lady of Lourdes. I am finding my stay here in the hospital has everything to do with numbers; how many contractions I have in a day, the baby's heart rate, my blood pressure, (most mornings a tech has to knock on my head to see if I am still alive because my blood pressure runs pretty low {88/38 one morning}). Some numbers are more significant than others like the cervical length. The shorter that number is, the closer to the end you get. The uterine wall thickness; if this number gets really small than surgery is imminent as we do not want the wall to get so thinned out that it will separate and rupture.
While numbers are part of my daily routine here, the one number I look at first thing in the morning and the last thing in the evening is the number I have written on my calendar counting down the days when my daughter will be born and the prospect of a normal life resumes.
NOW....
For some reason the birth of my fourth child, my second son, is a bit foggy to me. I know his birth was about as traumatic as John Paul's and maybe I have taken on some of my husband's traits of blocking out the little details about it. Zachary was born in March of 2005. Earlier the year before we had decided to leave our suburban home; a town in which I had grown up and was very familiar to me, to a home with more land. It was a big step for us, but we knew that with a growing family it would be for the best. But what I hadn't realized is how deeply this would impact me and stretch my comfort level to the max with such a significant move. We had put our home of 8 years up for sale at the beginning of the year 2004. An offer was made within 3 days. Within 9 days all the papers had been signed. It was a whirlwind from there and we made settlement on our new 3.75 acre home complete with a two stall barn and horse paddock in March 2004. The first night we moved into our new home I wound up in the driveway crying my eyes out and had an overwhelming feeling of dread and loss. I suppose it didn't help that the people who owned the house before us left it filthy.
At any rate, by August that year, feeling a little more settled in, we found out we were expecting baby number four. I was hoping the pregnancy would have gone as smooth as the previous two, but morning sickness hit early and hard. The strange thing about this morning sickness was that the antinausea pills, which had worked wonderfully for my prior three pregnacies was not working at all. I kept getting sicker and sicker. I was also noticing that I was losing large amounts of hair and my weight was dropping significantly which, at the time, didn't seem too strange because I had been so sick. By the end of September I was hospitalized and they drew a bunch of labs. It turned out I was hyperthyroid. I was released after a week and sent to an endocrinologist. He informed me that I had Grave's disease. He said I probably always have had it but it was magnified with pregnancy. So I went on hyperthyroid medications and I was feeling significantly better by November. The holidays came and went. My due date was April 19th and by the end of January I had come down with a bad virus that was going around. The coughing and sneezing eventually turned into pneumonia. At the same time I was going through a horrible fall out with a family member and I think between the emotionally stress and the physically stress my body just said that's it.
A couple of days into my 36th week I started to feel those familiar Braxton Hicks contractions on a regular rhythmic basis. I got worried and called my husband, wh0 came home right away. He called his mom to watch the kids. After 45 minutes she arrived and off we went. When I got to the hospital I was alread 3-4 cm dilated so they prepped me for surgery. The C-section was fairly uncomplicated with the exception that the wound site was oozing (I know, probably too much information!) after they closed me. Apparently, it wouldn't stop so they had to reinforce the surgical site with some special mesh.
Zachary Christian was born and weighed in at 6 pounds. He was having respiratory issues so they whisked him off to the Neonatal Intensive Care Unit and given a C-pap to help him along. This time my recovery from the c-section wasn't too horrible. I was up the next day and able to sit in the NICU with my son for most of the day. He was breathing room air and doing well until the feeding started. I did inform the nurses that I wanted him on hypoallergenic formula because of all the allergy/intolerance issues we had with the other children. The problem was that he wasn't keeping it down. This also was not a new thing for me or Kevin as all of the other children had reflux to one degree or another. His reflux seemed to be a little worse and sooner than the other kids though. I told the nurses he was a refluxer. So mid week they sent him off to radiology for barium swallow/upper GI which would show if he was refluxing. Sure enough he was refluxing, so the NICU pediatricans decided to start him on two different medications for reflux, Zantac which is an acid blocker and Reglan which is a motility agent and helps the food move faster through the digestive system. Within a day or so of Zachary going on these meds we noticed he started having funny twitching movements or jerks. Sometimes we saw it in his torso, sometimes his head would twitch and sometimes his limbs. Either Kevin or I was planted by his little isolette 24/7. We notified the nurses of this movement problem he was having and the NICU pediatrician was called who also saw what we were talking about. She ordered an EEG to see what was going on. We feared a seizure disorder. We were getting close to the end of the first week and really hoping he could just go home with us, but between his feeding difficulties and now this movement disorder it wouldn't be likely.
The doctors put him through several tests which included an EEG, and an MRI of the brain, which he had to be sedated for and that was scary. There were no real irregularities that had shown up, regardless, the team wanted to put him on antiseizure medications - the riskiest of those phenobarbital - a barbiturate that has sedative and hypnotic properties to it. My husband said, "no way!" He was pretty adamant about it too. We were furious to find out that they had administered the phenobarbital against our wishes. Nothing seemed to work though. He was still twitching.
By the end of the first week, I was essentially discharged, but the hospital was kind enough to give me a "nesting room" so I had a place to go to shower and eat and take a nap if I needd to and still stay with Zachary. I was missing my children so much and told Kevin I wanted to go home to see them for one night. So he came and got me and we left the hospital later in the evening. We were on the Atlantic City Expressway, on our way home, when Kevin noticed some headlights in his rear view mirror which appeared to be getting closer and closer. He started to move over into the right lane to let this guy pass us. Well, the other driver was going a little too fast and wound up clipping the back of our car. The next few moments, as I remember them happened in slow motion and by the guidance of many angels. The car started to spin. I remember screaming in horror and actually had time to think in those split seconds, "what will Zachary do without his mom by his side? He is all alone in the hospital right now." I remember Kevin being calm and collected. His right arm automatically went straight over to shield me and he managed to steer our spinning car with his left hand. He kept saying, "It will be all right...It will be okay." The next moment I looked up and we were facing forward, parked along the guardrail of the Expressway off of the left lane about a mile from our exit. I thought I was going to hyperventilate and noticed my hands wrapped in a protective manner around my belly as if to hold it together. I was amazed that we were not hit by any other cars that were on the Expressway at that moment. That, in and of itself, was miraculous. Kevin got me quickly out of the car and into the grassy median area. The car that hit us was on the other side of the road. This guy got out after about two or three minutes and ran across the two lanes to see about us. He spoke broken English and had a Russian accent. We had called 911 and they were sending police and ambulance and when he saw I had recently given birth he ran back to his car. Almost at the exact moment I said to Kevin, "you better get his plate number," he pulled away and left the scene. We were both checked out by the ambulance squad and the cop took our statement. The car was totaled so we couldn't drive home. The officer was kind enough to drive us the two miles or so to our house. My mother in law was watching the children for us that night. I remember walking in, my adrenaline still racing and hearing her say, "Bella has the flu. I just got done changing her sheets."
I think it's a blessing that God gives the human mind the ability to go numb because I honestly think the mind gets "full" and cannot process too many traumas all at once. That's how I felt...numb.
We returned to the hospital the next day. I had the nurses take him off the Zantac. It had a strong peppermint flavor to it and I wanted to see if his feedings would improve if we took that medicine away. I had always managed the other children's reflux by raising the head of the crib or thickening up the formula...never by meds. He was still having these strange jerking movements, but otherwise stable. We took him home at the end of week two and promised to follow up with the pediatric neurologist that week.
After we got settled at home we started researching reflux issues and seeing if there were any ties to seizure-like disorders. I was on a reflux message board one day about a month after we were home and there was a post on there from a mother and it read, "Reglan danger, please read!" Of course, immediately I opened the thread and read the warnings about how Reglan is not even approved for pediatric use and can cause "Parkinson-like syndrome" if administered to babies. Big light bulb moment for both Kevin and I. Immediately we discontinued the Reglan and within a few days he had no further twitching or jerking movements. How is it that the NICU nurses, pediatricians, pediatric neurologists and his own pediatrician at home did not know this was a side effect of the medication? I lost a lot of trust in the medical world at that point in time.
Zachary did pretty well and at about 3 months after his birth we received a letter from the state that indicated he had tested positive in the hospital for a possible genetic disorder. Apparently this test is part of a mandatory battery of tests they run on all babies before they were discharged. So off to the pediatric endocrinologist we went. She ran a series of tests and counseled us that she didn't think he would have any problems and that the growth hormones seem normal. She said sometimes preemies will test positive even if they aren't because they are born so little.
At a year he was due for a follow up MRI as requested by the pediatric neurologist we had been seeing since Zachary's birth. This was supposed to be a routine MRI. I was nervous because of the risks of putting a child under sedation. We went to the Children's Hospital for his MRI. They sedated him and did the MRI. Upon coming out of sedation we noticed Zachary was very irritated. The nurses said some kids transition from sedation better than others and some kids get very irritable. We were given instructions on how to care for him in the next 24 hours. Half way home, ironically right around the area of the Expressway where we had our accident, Zachary really started to wake up and he was freaking out! He screamed and kicked the rest of the ride home and when we got in the house it just got worse. We could barely hold him down. He couldn't walk because he was so woozy from the sedation, but he wanted no parts of anyone. We had to physically restrain him. After about two hours of this, I called the radiology department and told them the trouble we were having. She said to wait a little bit and eventually he would completely come out of it. "Eventually" meant another 4 hours of physical restraint, kicking and screaming. We were exhausted! He eventually went to sleep. We later found out that Zachary was the one in 50 children who experience irritable, combative and aggitated side effects of sedation. We would later find that this side effect runs in the family as Bella experienced a similar reaction to her MRI, but that's for another entry.
We got the results from the MRI the next day. There was a finding in the white matter of the left frontal part of his brain. We were told that we would have to have a repeat MRI in 6 months. Overall, he has done really well. His next MRI proved no changes to the defect. He went through a lot in his first two years, but he is a lovable, strong-willed little boy today, all the better for his experiences!
Today I went down for my Friday cervical length check in antenatal testing. The last time I was in there on Tuesday I left storming out of the unit after a horrible consult with one of the ATU physicians who treated me as if I had only about 3 brain cells working in my head. He could be right, but I felt like I was making a lot of sense! We had argued about my "plan of care" and date of delivery. Today was a much better visit. The results showed my cervix to be shortening. I am down to .244 mm. Last Friday I was up around .45 mm. I noticed that there were two docs consulting today and I asked specifically to be seen by the one I really admire and have a lot of respect for. He reminds me of a fatherly-type figure and when he is done consulting with me, he always gives me a hug. Little signs of affection when you are so isolated in the hospital can make your entire day! He basically said that if my fetal-fibronectin test turns positive; whenever it turns positive that they would move on the c-section right away. The fetal fibronectin test is a swab test that will indicate whether or not you will go into preterm labor in the next 10-14 days. I get this test done every Monday, so we'll wait and see what Monday brings.
When I got back to my room I saw a basket of fresh flowers from my husband, all my clothes were folded in my suitcase and a pajama-gram on my newly made up bed. The funny story about the pajama-gram is when I was here probably less than a week and they moved me into this private room - I get a knock on the door from the people downstairs who deliver packages and letters and flowers. It was a pajama-gram (box of new PJ's you can send to a person instead of flowers etc...). I was so excited to be getting a package. Well the label had the right room, but the name was not mine. Apparently, it was meant for the girl who was in here before me. It was a bit disappointing. I later told my husband about the package and he felt bad so here was my very own pajama gram! I made sure my name was on the box before I tore into it!!!
THEN...When I got back to my room I saw a basket of fresh flowers from my husband, all my clothes were folded in my suitcase and a pajama-gram on my newly made up bed. The funny story about the pajama-gram is when I was here probably less than a week and they moved me into this private room - I get a knock on the door from the people downstairs who deliver packages and letters and flowers. It was a pajama-gram (box of new PJ's you can send to a person instead of flowers etc...). I was so excited to be getting a package. Well the label had the right room, but the name was not mine. Apparently, it was meant for the girl who was in here before me. It was a bit disappointing. I later told my husband about the package and he felt bad so here was my very own pajama gram! I made sure my name was on the box before I tore into it!!!
For some reason the birth of my fourth child, my second son, is a bit foggy to me. I know his birth was about as traumatic as John Paul's and maybe I have taken on some of my husband's traits of blocking out the little details about it. Zachary was born in March of 2005. Earlier the year before we had decided to leave our suburban home; a town in which I had grown up and was very familiar to me, to a home with more land. It was a big step for us, but we knew that with a growing family it would be for the best. But what I hadn't realized is how deeply this would impact me and stretch my comfort level to the max with such a significant move. We had put our home of 8 years up for sale at the beginning of the year 2004. An offer was made within 3 days. Within 9 days all the papers had been signed. It was a whirlwind from there and we made settlement on our new 3.75 acre home complete with a two stall barn and horse paddock in March 2004. The first night we moved into our new home I wound up in the driveway crying my eyes out and had an overwhelming feeling of dread and loss. I suppose it didn't help that the people who owned the house before us left it filthy.
At any rate, by August that year, feeling a little more settled in, we found out we were expecting baby number four. I was hoping the pregnancy would have gone as smooth as the previous two, but morning sickness hit early and hard. The strange thing about this morning sickness was that the antinausea pills, which had worked wonderfully for my prior three pregnacies was not working at all. I kept getting sicker and sicker. I was also noticing that I was losing large amounts of hair and my weight was dropping significantly which, at the time, didn't seem too strange because I had been so sick. By the end of September I was hospitalized and they drew a bunch of labs. It turned out I was hyperthyroid. I was released after a week and sent to an endocrinologist. He informed me that I had Grave's disease. He said I probably always have had it but it was magnified with pregnancy. So I went on hyperthyroid medications and I was feeling significantly better by November. The holidays came and went. My due date was April 19th and by the end of January I had come down with a bad virus that was going around. The coughing and sneezing eventually turned into pneumonia. At the same time I was going through a horrible fall out with a family member and I think between the emotionally stress and the physically stress my body just said that's it.
A couple of days into my 36th week I started to feel those familiar Braxton Hicks contractions on a regular rhythmic basis. I got worried and called my husband, wh0 came home right away. He called his mom to watch the kids. After 45 minutes she arrived and off we went. When I got to the hospital I was alread 3-4 cm dilated so they prepped me for surgery. The C-section was fairly uncomplicated with the exception that the wound site was oozing (I know, probably too much information!) after they closed me. Apparently, it wouldn't stop so they had to reinforce the surgical site with some special mesh.
Zachary Christian was born and weighed in at 6 pounds. He was having respiratory issues so they whisked him off to the Neonatal Intensive Care Unit and given a C-pap to help him along. This time my recovery from the c-section wasn't too horrible. I was up the next day and able to sit in the NICU with my son for most of the day. He was breathing room air and doing well until the feeding started. I did inform the nurses that I wanted him on hypoallergenic formula because of all the allergy/intolerance issues we had with the other children. The problem was that he wasn't keeping it down. This also was not a new thing for me or Kevin as all of the other children had reflux to one degree or another. His reflux seemed to be a little worse and sooner than the other kids though. I told the nurses he was a refluxer. So mid week they sent him off to radiology for barium swallow/upper GI which would show if he was refluxing. Sure enough he was refluxing, so the NICU pediatricans decided to start him on two different medications for reflux, Zantac which is an acid blocker and Reglan which is a motility agent and helps the food move faster through the digestive system. Within a day or so of Zachary going on these meds we noticed he started having funny twitching movements or jerks. Sometimes we saw it in his torso, sometimes his head would twitch and sometimes his limbs. Either Kevin or I was planted by his little isolette 24/7. We notified the nurses of this movement problem he was having and the NICU pediatrician was called who also saw what we were talking about. She ordered an EEG to see what was going on. We feared a seizure disorder. We were getting close to the end of the first week and really hoping he could just go home with us, but between his feeding difficulties and now this movement disorder it wouldn't be likely.
The doctors put him through several tests which included an EEG, and an MRI of the brain, which he had to be sedated for and that was scary. There were no real irregularities that had shown up, regardless, the team wanted to put him on antiseizure medications - the riskiest of those phenobarbital - a barbiturate that has sedative and hypnotic properties to it. My husband said, "no way!" He was pretty adamant about it too. We were furious to find out that they had administered the phenobarbital against our wishes. Nothing seemed to work though. He was still twitching.
By the end of the first week, I was essentially discharged, but the hospital was kind enough to give me a "nesting room" so I had a place to go to shower and eat and take a nap if I needd to and still stay with Zachary. I was missing my children so much and told Kevin I wanted to go home to see them for one night. So he came and got me and we left the hospital later in the evening. We were on the Atlantic City Expressway, on our way home, when Kevin noticed some headlights in his rear view mirror which appeared to be getting closer and closer. He started to move over into the right lane to let this guy pass us. Well, the other driver was going a little too fast and wound up clipping the back of our car. The next few moments, as I remember them happened in slow motion and by the guidance of many angels. The car started to spin. I remember screaming in horror and actually had time to think in those split seconds, "what will Zachary do without his mom by his side? He is all alone in the hospital right now." I remember Kevin being calm and collected. His right arm automatically went straight over to shield me and he managed to steer our spinning car with his left hand. He kept saying, "It will be all right...It will be okay." The next moment I looked up and we were facing forward, parked along the guardrail of the Expressway off of the left lane about a mile from our exit. I thought I was going to hyperventilate and noticed my hands wrapped in a protective manner around my belly as if to hold it together. I was amazed that we were not hit by any other cars that were on the Expressway at that moment. That, in and of itself, was miraculous. Kevin got me quickly out of the car and into the grassy median area. The car that hit us was on the other side of the road. This guy got out after about two or three minutes and ran across the two lanes to see about us. He spoke broken English and had a Russian accent. We had called 911 and they were sending police and ambulance and when he saw I had recently given birth he ran back to his car. Almost at the exact moment I said to Kevin, "you better get his plate number," he pulled away and left the scene. We were both checked out by the ambulance squad and the cop took our statement. The car was totaled so we couldn't drive home. The officer was kind enough to drive us the two miles or so to our house. My mother in law was watching the children for us that night. I remember walking in, my adrenaline still racing and hearing her say, "Bella has the flu. I just got done changing her sheets."
I think it's a blessing that God gives the human mind the ability to go numb because I honestly think the mind gets "full" and cannot process too many traumas all at once. That's how I felt...numb.
We returned to the hospital the next day. I had the nurses take him off the Zantac. It had a strong peppermint flavor to it and I wanted to see if his feedings would improve if we took that medicine away. I had always managed the other children's reflux by raising the head of the crib or thickening up the formula...never by meds. He was still having these strange jerking movements, but otherwise stable. We took him home at the end of week two and promised to follow up with the pediatric neurologist that week.
After we got settled at home we started researching reflux issues and seeing if there were any ties to seizure-like disorders. I was on a reflux message board one day about a month after we were home and there was a post on there from a mother and it read, "Reglan danger, please read!" Of course, immediately I opened the thread and read the warnings about how Reglan is not even approved for pediatric use and can cause "Parkinson-like syndrome" if administered to babies. Big light bulb moment for both Kevin and I. Immediately we discontinued the Reglan and within a few days he had no further twitching or jerking movements. How is it that the NICU nurses, pediatricians, pediatric neurologists and his own pediatrician at home did not know this was a side effect of the medication? I lost a lot of trust in the medical world at that point in time.
Zachary did pretty well and at about 3 months after his birth we received a letter from the state that indicated he had tested positive in the hospital for a possible genetic disorder. Apparently this test is part of a mandatory battery of tests they run on all babies before they were discharged. So off to the pediatric endocrinologist we went. She ran a series of tests and counseled us that she didn't think he would have any problems and that the growth hormones seem normal. She said sometimes preemies will test positive even if they aren't because they are born so little.
At a year he was due for a follow up MRI as requested by the pediatric neurologist we had been seeing since Zachary's birth. This was supposed to be a routine MRI. I was nervous because of the risks of putting a child under sedation. We went to the Children's Hospital for his MRI. They sedated him and did the MRI. Upon coming out of sedation we noticed Zachary was very irritated. The nurses said some kids transition from sedation better than others and some kids get very irritable. We were given instructions on how to care for him in the next 24 hours. Half way home, ironically right around the area of the Expressway where we had our accident, Zachary really started to wake up and he was freaking out! He screamed and kicked the rest of the ride home and when we got in the house it just got worse. We could barely hold him down. He couldn't walk because he was so woozy from the sedation, but he wanted no parts of anyone. We had to physically restrain him. After about two hours of this, I called the radiology department and told them the trouble we were having. She said to wait a little bit and eventually he would completely come out of it. "Eventually" meant another 4 hours of physical restraint, kicking and screaming. We were exhausted! He eventually went to sleep. We later found out that Zachary was the one in 50 children who experience irritable, combative and aggitated side effects of sedation. We would later find that this side effect runs in the family as Bella experienced a similar reaction to her MRI, but that's for another entry.
We got the results from the MRI the next day. There was a finding in the white matter of the left frontal part of his brain. We were told that we would have to have a repeat MRI in 6 months. Overall, he has done really well. His next MRI proved no changes to the defect. He went through a lot in his first two years, but he is a lovable, strong-willed little boy today, all the better for his experiences!
No comments:
Post a Comment