Yesterday, Kyle's MRA was in the afternoon so I went ahead to school in the morning. I got the test back from the day before and I got a B on the test even though I was afraid I hadn't done well enough to even pass the test (biology is not turning out to be my best subject).
After school, I went straight to the hospital and, after sitting in the family waiting area for over two hours, got to go up and see Kyle. He was intubated for the MRA but by the time they brought him to his room, he was extubated and smiling. The doctors and nurses all said that the MRA went well and we should be good for the open heart surgery next week. I was able to get them to move the surgery to Friday instead of Tuesday. This way, I don't have to miss school or miss the surgery. I know the surgery is more important than my class but since this is an accellerated program, missing one class (and in this case, one test as well) could set me back quite a bit so I'm relieved that they were able to schedule it for Friday, instead.
After I left the hospital, I went by the funeral home to finally order the "thumbie" necklace I had hoped to get with Eric's footprint on it. Then I headed home to get ready for swing dancing.
A friend of mine picked me up and we car-pooled to Centro Asturiano for a free night of swing dancing. The place was packed. I had a blast.
Friday, February 23, 2007
Tuesday, February 20, 2007
Aaaarrrrgggghh!
After spending the majority of the day at the PICU yesterday with Kyle, he was brought down to the MRA area (which is currently in a mobile unit). Even though the anesthesiologist said there was the possibility he would need to be intubated to be sedated, apparently they didn't prepare for that possibility so when he was uncooperative with the IV sedation, they had to bring him back to his room because they didn't have room to intubate him in the mobile unit. They still don't even have him re-scheduled for the MRA. It's so frustrating.
Friday, February 16, 2007
New Information...
Just got the word today that Kyle is going to have an MRA (MRI of the heart) on Monday and then the valve replacement surgery (open-heart surgery) will most likely be on the 27th. Kyle's been feeling better and back to his smiley self but he's still in the PICU and will stay in the PICU until he's recovered from the surgery. I don't know how much will be different after the surgery - whether he will be able to feed from a bottle or still need the apnea monitor. We're just having to take it one day at a time.
School
Well, I've been in school for three weeks now and I've already completed two classes (Algebra and Communications). Despite my hatred of math, I managed to pass the algebra class with a respectable grade and I'll find out on Tuesday what kind of grade I got in Communications. I did okay on the previous test and class assignments and Tuesday I'll get my grade for my speech project that I presented today and the take-home final exam. I did my speech on "Life in the NICU" so hopefully I don't lose points for making the class and teacher cry... or crying a little bit during the speech myself (a little embarrassing).
They told us at orientation that this program (Non-Invasive Cardiovascular Technology) is a high stress program because it is excellerated but I didn't expect quite so much of a whirlwind education. Algebra consisted of 9 classes and 7 tests; Communications consisted of 3 classes, 2 tests and a speech presentation; and Biology has only been 3 days so far and there's already been a test. I am amazed that I'm keeping my head above water on this - especially with all that's going on with Kyle.
They told us at orientation that this program (Non-Invasive Cardiovascular Technology) is a high stress program because it is excellerated but I didn't expect quite so much of a whirlwind education. Algebra consisted of 9 classes and 7 tests; Communications consisted of 3 classes, 2 tests and a speech presentation; and Biology has only been 3 days so far and there's already been a test. I am amazed that I'm keeping my head above water on this - especially with all that's going on with Kyle.
My Speech
Life in the NICU
by Corinne Foreman
In a single year, over 4 million babies are born in the United States and the majority of parents are happily unaware of all the things that could have gone wrong. But roughly 12% of those births are followed by a stay in the Neonatal Intensive Care Unit (more commonly known as the NICU).
I speak from experience as a mother of three – two of whom have been residents of the NICU. Life in the NICU is a rollercoaster of events and emotions. Today I’m going to tell you about the joy, surprise, helplessness, fear, confusion, grief and anger involved in life in the NICU and a little about the joy and fear involved in going home after a long stay in the NICU.
No matter what other emotions accompany it, joy is usually the first and strongest emotion at the birth of a baby. Their arrival is highly anticipated. Even if they are born way ahead of schedule, we wait anxiously for them, counting down the days. When a child is in the NICU, sometimes joy is outweighed by worries and fears for a time, but there are moments that bring that joy back - moments that most parents take for granted. The first time you get to hold the baby, the first time you get to kiss them, the first time they wear clothes, and eventually, when you get to bring them home. These are experiences most parents expect to happen within twenty-four hours of life but for a NICU baby, there may be days, weeks or sometimes several months before their first kiss even.
Joy is quickly followed by (and sometimes outweighed by) surprise, especially since prematurity is the leading cause for NICU hospitalization. Many babies in the NICU are still named “Baby Boy” or “Baby Girl” since their parents haven’t had the time to decide on a permanent name. In fact, many times parents have not even had time for a baby shower, preparing the home, or even buying essential items like cribs or car seats. Even the most prepared parent is generally not prepared for a hospital stay of more than 24 hours – even if they had a complicated pregnancy. Parents have tours of local hospitals and birthing centers but never tour the local NICU. A parent doesn’t generally want to think about that possibility and they don’t prepare for it so it always comes as a surprise.
The most frustrating feeling in the NICU is helplessness. The average parent knows nothing about the medical equipment used in the NICU. They walk into the NICU and only know that their child has more wires, tubes and machinery attached to them than most dishwashers. There are generally at least three wires on their chest and one on the foot that connect to a monitor for their vitals. Depending on the child, there may also be an umbilical line or PICC line and there may be IVs in the baby’s feet, arms or scalp. There may be breathing tubes, feeding tubes, nasal cannulas, or even blindfolds for bililight treatment. Normally, when a child is hurt or scared, parents wants to hold them. It just seems to take away the pain and fear. But severely premature or low birth weight infants can react badly to stimulation, so the parents are discouraged from holding their baby. A lot of the times, all that the parents can do is just look at their baby with all the tubes and wires and try to sound comforting, speaking softly through the incubator plastic. The only experience I know of that compares with this helplessness is watching a loved one dying. There’s nothing you can do to help or change things. You can only watch and wait.
With this helplessness, naturally comes fear and confusion. We fear the unknown, and since most parents know so little about what is happening to their little baby, there is much to fear. The doctors and nurses rush around using terminology that might as well be a foreign language – apnea, bradycardia, bronchopulmonary dysplasia. All most parents know of these terms is that they mean something is wrong with their little baby. After a long stay in the NICU, parents start to become familiar with the terminology and technology. When all you can do is watch your baby, you have plenty of opportunity to look at the dozens of things going on for their care (the numerous medications and IV fluids, the specific vitals that are being monitored, the levels of oxygen on the ventilator or cannula, and many other things). Asking questions and researching can help to decrease the fear sometimes. But sometimes, the more you know about a condition just shows you how much there really is to fear. For example, asking what treatment options there are for bronchopulmonary dysplasia and hearing that there are steroid treatments that can be done that are 99% effective, decreases a fear. But hearing that the steroid treatments may cause severe neurological problems but without steroid treatment, the baby can die - not reassuring.
Sometimes, a parents’ worst fear is realized with the loss of their baby. Whether or not a child dies, death and life permeate the NICU on a constant basis. In fact, death is part of life in the NICU. Every parent in the NICU is fearing that their baby will die and many brace themselves for that possibility. Some witness as others experience a loss while others experience the loss first hand. I experienced loss first hand and it felt like the NICU froze and stopped functioning while I grieved, but when I later witnessed another family’s loss as they put up curtains for privacy and called in the chaplain, I realized NICU life continues. It just gets quieter for a moment out of respect for the grieving family. Within moments of the infant being taken away, the incubator is moved out and a new baby moved into their place. The NICU world continues moving. Many parents feel angry that their baby has to be in the NICU at all. They may feel cheated out of the joy that should come with a new baby and they feel jealous of other parents who get to take their baby right home and cuddle them. When a parent loses their baby, it is especially hard not to feel angry at the world. Even though the parents may know that there is no one to blame, it may seem like it would be easier if there was. They commonly try placing the blame with either the doctors or themselves.
For most, the stay in the NICU is ended by getting to go home. Whether it is after a few days or after several months, it is a happy occasion bringing home baby. There is a sense of relief that both parents and baby have survived the NICU. Life essentially picks up where it left off when baby was born. But things are a little different than expected. Though many leave the NICU with a clean bill of health, others leave with baggage. They may have special equipment for monitoring or treatment, numerous medications and scheduled appointments with specialists. For example, my own baby came home with a gastronomy tube in his belly for feeding, a feeding pump to use with the tube, an apnea monitor, six different medications, microlipids and thickener to add to his formula, and at least five specialists to follow up with outpatient. All of these factors lend to fear, naturally but even if the baby is discharged without the extra equipment, there is always the fear that they’ll have to return. For a preemie or low birth weight baby, a simple cold can mean a trip to the emergency room and more time back in the ICU.
Usually, the only people who know what life in the NICU is like are those who’ve been there – who’ve experienced this emotional rollercoaster from beginning to end. I hope that this speech is the closest any of you ever have to get to life in the NICU.
by Corinne Foreman
In a single year, over 4 million babies are born in the United States and the majority of parents are happily unaware of all the things that could have gone wrong. But roughly 12% of those births are followed by a stay in the Neonatal Intensive Care Unit (more commonly known as the NICU).
I speak from experience as a mother of three – two of whom have been residents of the NICU. Life in the NICU is a rollercoaster of events and emotions. Today I’m going to tell you about the joy, surprise, helplessness, fear, confusion, grief and anger involved in life in the NICU and a little about the joy and fear involved in going home after a long stay in the NICU.
No matter what other emotions accompany it, joy is usually the first and strongest emotion at the birth of a baby. Their arrival is highly anticipated. Even if they are born way ahead of schedule, we wait anxiously for them, counting down the days. When a child is in the NICU, sometimes joy is outweighed by worries and fears for a time, but there are moments that bring that joy back - moments that most parents take for granted. The first time you get to hold the baby, the first time you get to kiss them, the first time they wear clothes, and eventually, when you get to bring them home. These are experiences most parents expect to happen within twenty-four hours of life but for a NICU baby, there may be days, weeks or sometimes several months before their first kiss even.
Joy is quickly followed by (and sometimes outweighed by) surprise, especially since prematurity is the leading cause for NICU hospitalization. Many babies in the NICU are still named “Baby Boy” or “Baby Girl” since their parents haven’t had the time to decide on a permanent name. In fact, many times parents have not even had time for a baby shower, preparing the home, or even buying essential items like cribs or car seats. Even the most prepared parent is generally not prepared for a hospital stay of more than 24 hours – even if they had a complicated pregnancy. Parents have tours of local hospitals and birthing centers but never tour the local NICU. A parent doesn’t generally want to think about that possibility and they don’t prepare for it so it always comes as a surprise.
The most frustrating feeling in the NICU is helplessness. The average parent knows nothing about the medical equipment used in the NICU. They walk into the NICU and only know that their child has more wires, tubes and machinery attached to them than most dishwashers. There are generally at least three wires on their chest and one on the foot that connect to a monitor for their vitals. Depending on the child, there may also be an umbilical line or PICC line and there may be IVs in the baby’s feet, arms or scalp. There may be breathing tubes, feeding tubes, nasal cannulas, or even blindfolds for bililight treatment. Normally, when a child is hurt or scared, parents wants to hold them. It just seems to take away the pain and fear. But severely premature or low birth weight infants can react badly to stimulation, so the parents are discouraged from holding their baby. A lot of the times, all that the parents can do is just look at their baby with all the tubes and wires and try to sound comforting, speaking softly through the incubator plastic. The only experience I know of that compares with this helplessness is watching a loved one dying. There’s nothing you can do to help or change things. You can only watch and wait.
With this helplessness, naturally comes fear and confusion. We fear the unknown, and since most parents know so little about what is happening to their little baby, there is much to fear. The doctors and nurses rush around using terminology that might as well be a foreign language – apnea, bradycardia, bronchopulmonary dysplasia. All most parents know of these terms is that they mean something is wrong with their little baby. After a long stay in the NICU, parents start to become familiar with the terminology and technology. When all you can do is watch your baby, you have plenty of opportunity to look at the dozens of things going on for their care (the numerous medications and IV fluids, the specific vitals that are being monitored, the levels of oxygen on the ventilator or cannula, and many other things). Asking questions and researching can help to decrease the fear sometimes. But sometimes, the more you know about a condition just shows you how much there really is to fear. For example, asking what treatment options there are for bronchopulmonary dysplasia and hearing that there are steroid treatments that can be done that are 99% effective, decreases a fear. But hearing that the steroid treatments may cause severe neurological problems but without steroid treatment, the baby can die - not reassuring.
Sometimes, a parents’ worst fear is realized with the loss of their baby. Whether or not a child dies, death and life permeate the NICU on a constant basis. In fact, death is part of life in the NICU. Every parent in the NICU is fearing that their baby will die and many brace themselves for that possibility. Some witness as others experience a loss while others experience the loss first hand. I experienced loss first hand and it felt like the NICU froze and stopped functioning while I grieved, but when I later witnessed another family’s loss as they put up curtains for privacy and called in the chaplain, I realized NICU life continues. It just gets quieter for a moment out of respect for the grieving family. Within moments of the infant being taken away, the incubator is moved out and a new baby moved into their place. The NICU world continues moving. Many parents feel angry that their baby has to be in the NICU at all. They may feel cheated out of the joy that should come with a new baby and they feel jealous of other parents who get to take their baby right home and cuddle them. When a parent loses their baby, it is especially hard not to feel angry at the world. Even though the parents may know that there is no one to blame, it may seem like it would be easier if there was. They commonly try placing the blame with either the doctors or themselves.
For most, the stay in the NICU is ended by getting to go home. Whether it is after a few days or after several months, it is a happy occasion bringing home baby. There is a sense of relief that both parents and baby have survived the NICU. Life essentially picks up where it left off when baby was born. But things are a little different than expected. Though many leave the NICU with a clean bill of health, others leave with baggage. They may have special equipment for monitoring or treatment, numerous medications and scheduled appointments with specialists. For example, my own baby came home with a gastronomy tube in his belly for feeding, a feeding pump to use with the tube, an apnea monitor, six different medications, microlipids and thickener to add to his formula, and at least five specialists to follow up with outpatient. All of these factors lend to fear, naturally but even if the baby is discharged without the extra equipment, there is always the fear that they’ll have to return. For a preemie or low birth weight baby, a simple cold can mean a trip to the emergency room and more time back in the ICU.
Usually, the only people who know what life in the NICU is like are those who’ve been there – who’ve experienced this emotional rollercoaster from beginning to end. I hope that this speech is the closest any of you ever have to get to life in the NICU.
Saturday, February 3, 2007
From NICU to Home to PICU
Well, Kyle was home for two and a half weeks filled with numerous doctor's check-ups. Wednesday afternoon, Kyle was sounding a little congested. Wednesday night, none of us got any sleep. Kyle was up all night with the congestion. Every time he tried to fall asleep, he'd wake back up, snuffling. We used the bulb syringe several times but it didn't seem to help as much as he needed. Thursday morning, he sounded a little better so Chris and I went to work and school but my mom called a couple of hours later and Chris left work to come home. Kyle had a low-grade fever and the doctor's office said to give him Tylenol and see if the fever went down. The fever did go down but we decided to bring him in to the pediatrician's office anyway. Good thing we did. The pediatrician said that Kyle's saturation levels were dangerously low and he needed to be rushed to All Children's in an ambulance.
I met Chris at the Emergency Room. They started Kyle on the nasal cannula for oxygen and Albuterine breathing treatments. Poor little Kyle was miserable by that point, pretty much gasping between snuffles. The doctor at All Children's said that they were going to go ahead and set Kyle up in a room in the PICU (Pediatric Intensive Care Unit) because he needed to stay on the oxygen and breathing treatments longer so Chris stayed overnight with Kyle and I went home to get a few hours of sleep before going to school. Since the program I'm in is an accelerated program, missing one day of class would be like missing a week of a regular class so I couldn't afford to miss.
Kyle had several labs done as well as an echo and chest x-ray. The doctors said that it looked like an upper respiratory virus. They were able to rule out RSV but Kyle's still pretty miserable. Last night, I went to the hospital and took over watching Kyle so Chris could go home and get some sleep. I ended up getting some pretty good sleep myself since Kyle was pretty wiped out from all the activity the night before and that morning and he slept the entire night.
This morning, the doctor and the cardiologist each came to see Kyle and the cardiologist said that based on the echo from yesterday, they are looking at probably doing the valve replacement surgery (open heart surgery) as soon as Kyle is completely recovered from this virus. This is much sooner than we thought it would be but they think it would be best to do it sooner rather than later.
It's very frustrating to have Kyle back in the hospital after we've only had him home for such a short time.
I met Chris at the Emergency Room. They started Kyle on the nasal cannula for oxygen and Albuterine breathing treatments. Poor little Kyle was miserable by that point, pretty much gasping between snuffles. The doctor at All Children's said that they were going to go ahead and set Kyle up in a room in the PICU (Pediatric Intensive Care Unit) because he needed to stay on the oxygen and breathing treatments longer so Chris stayed overnight with Kyle and I went home to get a few hours of sleep before going to school. Since the program I'm in is an accelerated program, missing one day of class would be like missing a week of a regular class so I couldn't afford to miss.
Kyle had several labs done as well as an echo and chest x-ray. The doctors said that it looked like an upper respiratory virus. They were able to rule out RSV but Kyle's still pretty miserable. Last night, I went to the hospital and took over watching Kyle so Chris could go home and get some sleep. I ended up getting some pretty good sleep myself since Kyle was pretty wiped out from all the activity the night before and that morning and he slept the entire night.
This morning, the doctor and the cardiologist each came to see Kyle and the cardiologist said that based on the echo from yesterday, they are looking at probably doing the valve replacement surgery (open heart surgery) as soon as Kyle is completely recovered from this virus. This is much sooner than we thought it would be but they think it would be best to do it sooner rather than later.
It's very frustrating to have Kyle back in the hospital after we've only had him home for such a short time.
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